tag:blogger.com,1999:blog-69793502314689254832024-03-08T14:59:16.458-08:00Life as I know it; a Finamore taleThis Is my blog about my life and dealing with my auto immune disease CIDP.
Basically this blog is my therapy while I deal with this intense and scary time in my lifeRuby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-6979350231468925483.post-27803729923261882382015-01-12T10:59:00.001-08:002015-01-12T13:07:45.752-08:00Happy new year!Alright so I'm a little late on the happy new year thing, but in my defense I've been a bit busy. <div><br></div><div>Also im getting a little tired of talking about myself, I mean there's only so much I can say before I bore you all to tears.</div><div><br></div><div>I had my 3 month follow up with my Neuro last week. I had been waiting patiently for the results of my gallium scan. Basically I had to shut it out of my brain for 3 months and try not to think about it. </div><div>The results all came back normal, there was nothing on the scan that indicated any inflammation or anything troubling. </div><div>The neuro said that the mouth glands sometimes don't show up well on the scan so he would like to do the lip biopsy just to be sure. I agreed with him, although the thought of taking a chunk out of my lip sounds a little less than appealing. </div><div>I guess on the bright side he didn't opt for the eye lid biopsy. He said that would have given me a black eye for a few weeks. But I think I could have rocked it. </div><div><br></div><div>If the lip biopsy comes back negative then I don't have Sjögren's syndrome either. </div><div><br></div><div>If that is the case we will start weening off the imuran. He said he doesn't think staying on this drug forever is a good idea as in the long term it can cause cancer. He also said if this comes back negative he thinks all my symptoms are just a bad response to a viral infection I had. Which while this leaves me frustrated since I still do not have a definitive answer it isn't bad news so I remain hopeful. </div><div><br></div><div>I then asked if I could get tattooed anytime in the future. He told me he thinks it will be fine as long as I don't go below the knee or on my hands. So I will take it! Now just to come up with money somehow. </div><div><br></div><div>Overall things have been going pretty well. I've been practicing with the 4 prong cane, and hoping to master that by this summer so I can look a little less like 84 and more like myself! </div><div><br></div><div>I've been working hard the last few weeks to lose the weight I gained back during Christmas. I've only lost about 13 pounds and I have a long way to go but im hoping with determination and help from friends I can accomplish my goals by summer. That may be wishful thinking but I have been doing a lot more walking and using my chair a lot less. </div><div><br></div><div>Everytime I get frustrated with myself I think of what I couldn't do myself last year and I then am impressed with all the progress I have made. I seriously feel like all of you push me so hard even just by inviting me out. </div><div>Last year it was so hard for me to get in and out of people's houses that I found myself only going out once or twice a week. And missing out on a lot of fun. </div><div>This year I have been quite the busy bee! </div><div>Some days I long for the times I spent in my bed with netflix! It's good to recoup, but not wallow. </div><div><br></div><div>I gotta say this is my first winter with the skis on my walker. While this is a good idea for around the house, they really do glide across the snow! Ha Im just doing my best not to end up face first in a snow bank. There's been a few close calls, but overall im trying to stay upright :) </div><div><br></div><div>I <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">honestly try and start each day and think about the positive. Sometimes it works and sometimes it doesn't but I would rather be positive than laying in bed having a pity party. (And trust me sometimes that does happen) </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I really do have a lot to be thankful for, even though sometimes I feel pretty meh. </span></div><div><br></div><div>Actually I'm doing my best to just laugh as much as possible, cry only when I need to and just live life the most positive way I see fit. </div><div>2014 wasn't didn't start off as the best year, but I gotta tell you it ended pretty fabulous. Don't ever let anyone dull your sparkle! Keep shining, because as my good friend Keara always told me "what other people think of me is none of my business" and she's right.</div><div><br></div><div>There's always going to be some hater who doesn't love you for you. </div><div>And you know what, that's alright. </div><div>I have plenty of people that do love me for exactly who I am and those people hold the greatest spots inside my heart. </div><div>And you all know exactly who you are! Love you more than you can ever know. </div><div><br></div><div>On that sappy note, I will end this blog! </div><div><br></div><div>Xo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-63149565175192728952014-11-09T22:52:00.001-08:002014-11-09T22:52:12.664-08:00Tears of a clown<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When you go through a series of life changes it's only logical that at some point you are going to reach your breaking point. </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I struggle with this.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I want to stay positive and focused and just push myself as hard as I can, but at the same time Im not sure if I am being realistic. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's hard to go from being able to walk to a wheelchair/walker. To have to relearn pretty everything all over again.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">And if that wasn't enough lets throw in relocating and a breakup into the mix. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Which lets be honest should be called a break down because there is nothing uplifting about it. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I find myself being jealous of people that can walk, drive, hell even dance (Which apparently I'm terrible at).</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I get upset and wonder if I will ever be able to do those things again. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I knows lot of people with chronic illness think it's all part of a larger plan.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I have a hard time with this theory. If that's the case your plan sucks! </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">What is the point of this plan? And if one more person says "God only gives you what you can handle" to me I may legit lose my mind. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">People ask me why I'm not more mad about things. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Well I am mad. Mad, frustrated and genuinely annoyed. I don't understand why this happened or the timining of it happening or if I will ever fully get past this. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The last few years have been the hardest of my life and it really sucks to know that when your life goes to shit people will just give up on you. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The pain only makes you stronger. When I got that tattooed on me I didn't even know the half of the pain a body can endure. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I sit here typing this with blurred vision because I cannot stop the tears from erupting from my face.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">95% of the time I am positive, funny, nice and even happy. Some days I just break down. I guess sometimes you just need to do that in order to really cope with the challenges every day life brings. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Working on liking the new me and accepting that things are the way they they are and I can't change that. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's just so hard when you never wanted there to be a new version of yourself. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When your version 2.0 is not living up to 1.0 standards. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I just miss being able to do so many things that everyone takes for granted on a daily basis. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's hard sometimes being broken. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Especially when everyone is constantly trying to fix you and you don't even know how to fix yourself. </span></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-66596232649884645652014-11-03T11:05:00.000-08:002014-11-03T11:05:16.040-08:00all the small things Well I never really know where to start these things.<br />
I am attempting to type this on the actual computer ! Start time 1:45pm, my typing isn;t exactly better my fingers are still numb and feel fat and clumsy. Guess it also doesn't help that the mac keyboard has the flat keys which makes them harder to press as it is. oh the woes of me.<br />
<br />
Anyhow things have been going well.<br />
I had my gallium scan a few weeks ago and I gotta say it was pretty uncomfortable to lay on a flat hard table with your arms above your head for a damn hour!<br />
I kept trying to get a peek of the screen and see what showed up. The neuro had said only spots with inflammation would show so i was trying to cheat and take a look. It is so hard for me to constantly be waiting on answers! I am terrible at waiting (and waking up, seriously ask my mom)!<br />
I actually emailed the doctors office this morning and inquired about the biopsy and hoping they will actually get back to me and let me know if that is going to be required or not.<br />
<br />
Time check: 1:50 not too bad so i Guess maybe my typing is improving as well. (I got a little ahead of myself as that line was a definite finger fumble )<br />
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I am not entirely sure what i am hoping for with these test results i mean on the one hand it would be nice to finally have a concrete diagnosis but on the other a biopsy doesn't exactly sound thrilling if I'm being honest.<br />
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I have been trying to eat better which is proving to be challenging since well whenever anyone wants to do something it usually involves food. And well lets face it I do love food, especially Mexican food. I am down 7 pounds currently and my first goal is 8 pounds away. I wanted too lose 30 to start and that to be done by my besties birthday which is the end of January. Once I finish that then i will focus on the last 10! Losing weight has always been challenging for me and now it will be made even more difficult due to some of the swelling caused from my meds.<br />
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I'm just glad my steroid face is finally starting to subside!<br />
When they tell you they think steroids will help you they never tell you what exactly they will do to your body! High dose steroids for 1 year did the following to mine:<br />
40+ pounds gained<br />
the worse stretch marks i have ever seen<br />
Super sensitive stomach<br />
crazy sleep schedule<br />
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But they also helped me walk again and for that i'm thankful. I'm not quite there just yet but i've come a really long way.<br />
<br />
Well now that Ive probably bored you to death I think that will conclude todays update.<br />
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Time check: 2:04pm Not too shabby.<br />
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xoRuby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-80592917494635884012014-10-08T21:14:00.001-07:002014-10-08T21:14:28.646-07:00Space, the final frontierSo this week has had its ups and downs. <div>Monday I had a follow up neuro appointment that I had been waiting for what seemed like an eternity. </div><div><br></div><div>He went through and did all the normal checks he would do. </div><div>He said my strength was really good and a few of the things I did better on. </div><div>I now had a bit of a reflex in my right elbow. He said that is the shortest nerve. </div><div>The nerve that runs to the wrist second longest and then the leg even longer. </div><div>I'm not sure but I think he was implying the other nerves are longer so may take a bit longer to regain the reflexes in those areas. </div><div>We then discussed my EMG results. </div><div>He said that none of my emgs showed any demylienation so he's not sure why they would have diagnosed me with a demylienating disease with no evidence of it on any of the test. </div><div>The increased protein levels point to auto immune not specially cidp. </div><div><br></div><div>He then said he wanted to run some more tests because he thinks it's something called Sjögren's syndrome. </div><div>I will be going in did a gallium scan. </div><div>They will inject me with some radio active dye, when I will return the next day for a scan and the following day as well. </div><div><br></div><div>The scan should show him if there is inflammation in my mouth or eyes because that's a big factor in this disease once he has that answer they will then do a biopsy of either my lip or my eyelid .</div><div>Neither sounds thrilling but I think I would choose the lip if given the chance to pick.</div><div><br></div><div>He said regardless all my blood work came back Negative for lupus, Cancer and something else that I'm forgetting. They actually sent my blood to the mayo clinic which I thought was pretty cool since they are supposedly the best of the best. </div><div><br></div><div>Other than that he said everything looked good. Just waiting on a call now to schedule the scan. They also took another obscene amount of blood for more tests. Sometimes I feel like a lab rat. </div><div><br></div><div>I kinda had a mini melt down on Tuesday and was generally in a funk. </div><div>It's just frustrating to think you finally know what is going on with your body and then their like "just kidding! You were lied to". I have to say I am so glad we didn't go through with the chemo first thing or I would be real upset right now. </div><div><br></div><div>Today I woke up feeling quite better and relaxed most of the day because I knew I was going out tonight. My friend Ang put on a very fun pottery night. </div><div>It was a bit of a challenge since there was stairs all around but with the help of my friends we made it work! </div><div><br></div><div>The clay was great OT for my hands and while my pumpkin and bat are not the most amazing it was seriously a lot of fun with a nice group of ladies. </div><div><br></div><div>Also was explained more of where the term spoonie kinda came from and man does it make sense. I totally used all my spoons up today that's for sure! </div><div><br></div><div>I'm getting very excited for my road trip with Leah as it's the first one I've taken since all of this happened. I've been a bit in an emotional funk and im hoping this is going to bring me out of it. </div><div>Nothing quite like a weekend with your best friend! Laughter is good for the soul. </div><div>I hope to start updating this more, but I will admit I am starting to feel like my posts are boring. </div><div><br></div><div>So thanks to everyone who reads this thing :) </div><div><br></div><div>Cheers </div><div>Xo </div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-18645712473561224842014-09-05T16:12:00.001-07:002014-09-05T16:12:27.415-07:00September already?Things have been going really well.<div>I feel like I'm moving better and faster, been getting out of the house more. Even had a few slumber parties on my own and one impromtu at that. But pretty much made it work! </div><div><br><div>I keep trying to compare things in my head of how I was a year ago as opposed to how I am now. And honestly I feel like I have come SO far. </div><div><br></div><div>Last September I couldn't hang out for more than a couple hours. And sometimes that was even pushing it. I didn't hardly want to leave the house. Everything was exhausting and no matter how much sleep I got it still didn't feel like enough. </div><div><br></div><div>Ok that last part may still be true, the thing is though I got tired of babying myself and I wanted to really get out there and live! </div><div><br></div><div>Yes I get tired, it takes me 10 minutes to get into a car, sometimes I lose my balance while trying to sit, or my knee randomly gives out.</div><div>I need an additional person to help me with pretty much everything, but so many people have done so without even having to ask. </div><div><br></div><div>I get that I'm different now and that some people can't handle that, some people have even said "Dawn is doing terrible"</div><div>But you know what? I'm not! </div><div><br></div><div>I get up each day with the most positive attitude I can have. Even if I am having a crappy day I put on a smile anyway (fake it until you make it) and you know what 90% of the time those days are great! Everyone prefers sunshine to storm clouds (well maybe a little storm never hurt anyone, but you know what I mean)</div><div>Some days I do too much and pay for it for a week after, but life is for living and loving and not wallowing. </div><div>Wallowing doesn't get you anywhere! </div><div>As my brother once told me "being hurt is not something you can stop from happening, but being miserable is always your choice" and I choose to be happy an fun and share laughs with people I care about. </div><div><br></div><div>There are people out there that have it so much worse than me.</div><div>There are people that never leave their house. </div><div><br></div><div>I can't do that, the main thing that helps me get through each and every day is my friends and family.</div><div><br></div><div>The thing is, yes I got dealt a shitty hand. No one wants to be disabled in their thirties. No one wants to be co dependent on other people, but it's what has happened. I just choose to make the best out of every day because I am living proof that you don't know what tomorrow can bring. </div><div><br></div><div>Ok I sort of got off track from what I originally came here to write about. </div><div>Today was my second to last day of physical therapy. Granted I will be continuing my exercises at home but it's taken me awhile to get to this point. </div><div><br></div><div>Today I did a repeat of the 6 minute walk test and I beat my goal that was set from the start. I'm really proud of that because I feel like it has been a long time coming. I was afraid since I was still not feeling 100% that my test was going to not be up to par. </div><div><br></div><div>I was partially annoyed that she did the exercises in the wrong order though so I was I tired when she wanted to do the balance stuff. Which by the way standing with my eyes closed seems to last a whole 3 seconds before I topple over.</div><div><br></div><div>I am hoping that at my next neuro appointment I will receive good news. I am having a hard time waiting so long in between appointments. Especially since that last EMG the doctor didn't think there was any signs of dymylination. </div><div>Which blows my mind cuz that means one of two things. And I honestly hope that it means I'm getting better and not that I'm misdiagnosed. </div><div><br></div><div>Well I guess that's about it for now :-) </div><div><br></div><div>-D </div><div><br></div><div><br></div></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-84957090746523109202014-07-11T10:13:00.001-07:002014-07-11T10:13:41.210-07:00Electricity and needlesI woke up early and was procrastinating getting ready for my appointment. The paperwork had said to shower the night before which I hadn't done that so I had to shower that morning. Already a rule breaker ha. <div>I even shaved my legs which is rare these days since a razor in a numb area is never a good idea. Anyhow I was showered and ready around 11:30.</div><div>I'm not sure why I took the time to blow dry my hair as it crinkles up upon any contact with humidity. </div><div>I used to be able to deal with my wavy hair but my medication curl just gets frizzy and it's so ugly! </div><div><br></div><div>Ok I got off topic so we arrive in the parking structure a little before 2, we have to stop and get a visitors pass. Then there's a patient registration office where you have to wait until your name is called and proceed to a certain desk number. Seemed a little weird. </div><div>Anyhow once that was complete we found the specific elevators we needed and went to the 5th floor. </div><div>Upon arrival there was another registration desk and a waiting room. </div><div>My appointment was at 2:30 and I was called back about 2:45 by a doctor who I thought was going to conduct the EMG. </div><div>He asked me several questions and then proceeded with the normal exam. </div><div>When he checked my reflexes I thought I may lose it though. I was trying so hard not to laugh as he hit my ankle over and over again. He kept turning my leg, then my foot and expecting different results. Sorry buddy clearly no one told you I don't have reflexes! </div><div><br></div><div>He left and said he was sending in the tech who would conduct the first part of the test. For those of you who don't know part one consists of being shocked over and over again to test nerve response. Part two consists of a needle being placed in your muscles and they ask you to move said muscles while the needle is in there. Part two has never been a favorite of mine. The first time I had it done I cried. </div><div><br></div><div>Anyhow Brian came in to do part one.</div><div>He was a younger guy and very nice. </div><div>They mark you with a sharpie in all the areas they are going to shock. I'm not entirely sure what they are always measuring but they always have a tape measurer out during the procedure. </div><div>First was my left hand and arm. </div><div>This was the first time I remember my fingers moving while being shocked so maybe that's a good sign. </div><div>The dreaded behind the knee ultra shock always leaves me squinting and fighting back the urge to yell.</div><div>He left the room and came back and said he had to redo some in my hand. He kept apologizing, and I kept telling him it was alright. It's his job to shock me as much as I don't like it much.</div><div>He then said we were going to do the right leg but not as many as my silence left him thinking I may punch him in the face. My silence is the only way I can get through it without screaming so I just work on deep breaths and hope for the best. Once he was done he said he was going to have the doctor review them and then the doctor would be in for part two. </div><div><br></div><div>Cut to what felt like an eternity later, me laying on this hospital bed in a stupid fucking gown that doctor one insisted on that I probably could have avoided! </div><div>"Come the fuck on already!" I said out loud. It was almost as if he heard me because there was a knock on the door a minute later. To my surprise it was another doctor. </div><div>My dad said "oh they send you in to do the painful stuff" he said "well I am the boss" in his looks he reminded me a lot of the police Captain from Dexter (Geoff Pierson for those who don't watch dexter). </div><div>The first thing he says "who told you that you have Cidp?" And I was kinda like blown away and I'm like "the last 3 doctors I've seen" then he asked if they had elaborated on that and I wasn't really sure what he meant. He then proceeded to tell me that there are different types of Cidp. </div><div>He said Cidp was a demylienating disease and my nerves show no sign of the mylien being damaged. He said without the old EMG it's hard to say. </div><div>So at this point my mind is blown. </div><div>Either A) my meds have actually worked and my nerves are rebuilding or B) I was misdiagnosed by 3 neurologist. </div><div><br></div><div>He then starts up the test and was very friendly and kept joking which always makes you feel more comfortable in this situation. "I hope you never go bankrupt they will want to sell your artwork" "avoid the DIA they will want to put that on display" </div><div>He got to my thumb and told me "this is guna pinch a bit" and I made a gasp because it hurt like hell and he's all "I told you it was going to pinch!" </div><div>Anyhow the test proceeded to go okay. The calf muscle with my muscle flexed was incredibly painful. </div><div><br></div><div>After the test completed he said he is going to go over the results with my new neuro. I'm glad that there is two doctors who really know about this disease that are working on my case. I'm hoping that I will finally be able to get some answers about everything. </div><div><br></div><div>Last night while on the deck my dad and my brother both told me how proud they are of me and how I've been handling all this and that was really nice to hear. </div><div>Just taking it one day at a time and trying to keep pushing myself a little more each day. </div><div><br></div><div>That's all for now! </div><div>Xo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-56173719865001723182014-07-08T11:10:00.001-07:002014-07-08T11:30:17.519-07:00Monthly updateWell it seems I like to update this only once a month these days. <div>That's alright I'm sure you all needed a break from my daily updates anyway. </div><div><br></div><div>I met with my new neuro on July 1.</div><div>I was incredibly nervous because based on his picture online he looked old and intimidating. We arrived early as they told us to (but there was far less traffic than anticipated so we were real early) and the waiting room was empty aside from 1 other gentleman. It was around 8:15 and my appointment was at 9.</div><div>Slowly but surely people started trickling in to the waiting room. </div><div>Finally at 8:30 the opened the window to check people in.</div><div>People went to the window in order cept this one guy was apparently too important to wait his turn. </div><div>Anyhow I filled out my paperwork and paid my copay and sat down and waited.</div><div><br></div><div>When I was finally called back by the doctor I was feeling especially anxious. I wasn't sure what he was going to say about the chemo my other doctor suggested. </div><div>He said the way my other doctors office had sent the records over was very confusing and he didn't feel like he had all the information he needed. </div><div>We went over the full story again from the beginning which now most of it all seems a blur. </div><div>He did the exam like they always do and for the first time in forever I had reflexes in my arms! I even said "oh that's new" when it happened haha. My leg reflexes were still non existant. He went through all the motions and told me I was having trouble walking because I didn't know where my feet were. Which is what I was told in the past. He confirmed Cidp. </div><div>He said my motor functions were almost normal again, so most of my issue is sensory. </div><div>He said he didn't want to go with an aggressive treatment like chemo until he found out how much nerve damage I had was permanent. No sense in shocking the body with poison if it's not even going to fix anything. I liked that he wanted to check everything out before just diving right in to that treatment since it was what was recommended by my last neuro. </div><div>He put in for some blood work, PT and an EMG (my favorite). </div><div>I left his office and went down to the 4th floor to have my blood drawn. They took 8 viles which seemed kinda scary but he requested a ton of tests so it made sense . I do miss kaiser and being able to log In and look at my test results though! </div><div><br></div><div>My PT evaluation is scheduled for tomorrow at 4. I'm nervous that I am not going to like them as much as Erica but hopefully I will like them enough to really achieve some great progress! </div><div><br></div><div>EMG is scheduled for Thursday afternoon and while I am not looking forward to being shocked with electricity over and over again, I am looking forward to finding out how much nerve damage I do have. </div><div><br></div><div>As of this week I'm now on 15mg of prednisone every other day. </div><div>I'm hoping that all my steroid bloat will start disappearing soon. </div><div>I did find bio oil at target yesterday on sale. So I'm giving that a try on my fabulous prednisone stretch marks.</div><div>However it says to use twice a day for 3 months! So it's guna be awhile before I see a difference.</div><div><br></div><div>I started logging my food again Sunday. I am hoping I can get back on track and start losing this extra weight from drugs. </div><div><br></div><div>Wow this update is kind of boring! Hopefully my next one I will have something exciting to blog about. </div><div><br></div><div>That's it for now </div><div>Xo </div><div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-57863546440725346562014-06-03T21:58:00.001-07:002014-06-03T21:58:08.233-07:00It's been awhile...Well it seems I feel off the blog wagon! I was doing so good with keeping it up to date and that all just went out the window. <div>I am not sure where to start with what has been going on so I guess I will go with the most recent events.</div><div><br></div><div>As most of you know last Saturday I said goodbye to life In Cali and started my journey back to Michigan. </div><div>If you have ever had to travel and use the "aisle chair" to get on the plane you will understand my frustration after the whole plane was boarded then they decided we would have to switch planes. And then when I finally got off the plane I then got to sit in that annoying chair for over an hour while they got the new plane ready because my walker and chair were already on the plane! </div><div><br></div><div>Anyhow I barely slept on the plane and noticed I had been feeling twitchy and then my ankles swelled up huge! I am not sure if it was the Airplane or sitting in that uncomfortable position for so long or what but it was quite terrible! The strong man who pushed me down to the baggage claim along with my luggage though he was pretty awesome! </div><div><br></div><div>Today I woke up and swore my foot was broken. It felt like a mix between a terrible Charlie horse and like when I joint gets really stiff and you need to pop it. I literally cried when I stood up. So I've been icing and elevating and trying to take it easy. I guess I have pretty much been going nonstop for the last week and a half. </div><div>Maybe my body is just tired. </div><div><br></div><div>I'm still waiting to hear of bcbs has accepted my application for insurance. </div><div>I requested my records be sent over to super neuro awhile back and also waiting to hear if he's received them. </div><div>I have a tentative appointment for July 9 and hoping I can still keep it. </div><div><br></div><div>The doctor said my next option would be chemo as I have talked about before in here. I'm still unsure if I want to take that step. I'm not worried so much about losing my hair but the idea of losing all bladder function doesn't sound appealing to me. Neither does a creepy brain virus that you could potentially die from. I mean I just don't know if the risks are worth it. Guess we will see what the new neuro thinks. </div><div><br></div><div>These past few days have been a whirlwind I keep forgetting what day it is! Between the red eye flight and the extra pill I took for my foot I feel a bit spacey! </div><div><br></div><div>I do have to say that I have really enjoyed seeing everyone these past few days, although there are definitely people I am missing a lot right now too. </div><div>Trying to stay positive with everything because being a sad panda will get me no where! </div><div><br></div><div>I truly hope you are all doing well ! </div><div><br></div><div>Xo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-52783882669329904102014-04-13T02:05:00.001-07:002014-04-13T02:05:49.254-07:00Music <3Sometimes when I get in an emotional funk I like to drown myself in music.<div>I go back through all the old albums that at one point I felt defined me. </div><div>The words can cut deeply and leave my heart bleeding once more. </div><div>A song has such power to invoke so many different emotions. </div><div>Sometimes you remember the exact feeling you had when you first heard it. </div><div>The reason why you related to it, fell in love with it and played it over and over again on repeat. </div><div><br></div><div>The rain on the windshield, glow of the stereo</div><div>Cigarette pressed between my lips as I took the long way home. </div><div>Cool crisp air on my face, tears welled in my eyes as I sang along. </div><div>Sometimes the long way home turned into the even longer way home. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><div><br></div><div>Tonight I listened to a lot of music.</div><div>Cleared my head </div><div>Felt a lot of Stuff I had forgot about.</div><div>With my emotions in over drive lately I thought for sure I would be crying again this evening but instead I just feel really calm. </div><div><br></div><div><br></div><div>If you ever wanted a peek inside my crazy brain here you go! </div><div><br></div><div>NIN- something I can never have </div><div>Fuel- bad day </div><div>Grade- the inefficiency of emotion </div><div>Glassjaw-when one eight becomes two zeros </div><div>Rilo kiley - does he love you</div><div>Pearl jam - black </div><div>Grade- seamless </div><div>Glassjaw- apes dos mil </div><div>NIN- gave up </div><div>Poison the well - nerdy</div><div>Silverchair- do you feel the same? </div><div>Grade- stolen bikes ride faster </div><div>Rilo kiley- portions for foxes </div><div>Grade- triumph & tragedy </div><div>Pearl jam - elderly woman behind the counter in a small town</div><div>Silverchair-black tangled heart <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><div>The postal service- such great heights </div><div>Rilo Riley- silver lining </div><div>Pearl jam- corduroy </div><div>Glassjaw- must've run all day </div><div>Rilo kiley- breaking up </div><div>Our lady peace- somewhere out there</div><div>Pearl jam - rearview mirror</div><div>Alice in chains - would?</div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-60872745043488376292014-04-06T23:27:00.001-07:002014-04-06T23:27:52.930-07:00Doctors, X-rays and bloodwork oh my<div>Been awhile since my last update. </div><div>I feel like there is so much to get done but I don't have the leg muscles to do it! </div><div>All travel arrangements of the mood have been arranged, part of which paid for and now just need to pack. </div><div><br></div><div>I rejoined weight watchers in a desperate attempt to lose some of this weight I've gained from the steroids. I've been trying to make good choices but I feel like it's hard in this house when my ribs kill and doing the stairs are a nightmare. </div><div>First week down 4.4 and now let's hope I can keep this rolling! </div><div>Since I'm currently not drinking it will be easier (hopefully). </div><div><br></div><div><br></div>So I had a few appointments on Friday. <div>First up was my neuro.</div><div>I went in with my list or questions as I normally do. </div><div>The list was shorter than usual but I felt a little ridiculous asking my doctor about smoking a joint. </div><div>Her response was quite funny as she said she wouldn't do it, it wouldn't help the neuropathy but certainly a lot of people try a lot of different things for pain.</div><div>She said she wouldn't do it because it would make her feel clumsy. </div><div>My verdict is still out on this subject. </div><div><br></div><div>I spoke with her about melatonin and she cleared it as Ok to take with my other medicine. I have certain nights that I just cannot sleep. The medication I have is actually for anxiety and I hardly ever take it. Usually I feel hung over the next day if I do and I don't like that feeling much either. </div><div><br></div><div>The other subjects were in regards to the new doctor I will be seeking out in Michigan. She looked at the website and the doctors that I had found on the gbs-Cidp website. She said the facility looks great and it seems like they specialize in CIDP. </div><div>Then onto the not so good news. </div><div>She doesn't think my Imuran is working as well as it should be. </div><div>While my muscle strength is increasing my sensory loss hadn't improved at all. </div><div>She gave me a list of a couple things she thinks I should discuss with the new doctor.</div><div>Both options are IV given and chemo drugs. </div><div>One (cytoxan) has been linked to serious bladder issues, hair loss and organ damage.</div><div>The other (Rituxan) has been linked to some very serious virus that can effect your brain. PML I believe it was called. </div><div>I guess the virus already lays dormant in like 2 out of 3 people. She said you have to be monitored very closely while receiving this. Which would only be once every 6 months. But I did ask in my Cidp group and there's been a few people who have received great results from this. </div><div><br></div><div>I'm so torn because I don't want to keep on this slow boat of healing if they don't think this is going to get me any better, but at the same time chemo drugs have serious side effects and I am feeling kinda meh about those side effects. It doesn't help that google gives you all kinds of information that you probably don't need and it makes everything seem incredibly more scary! </div><div><br></div><div>Next appointment was in regards to my ribs. The doctor thought I possibly had a cracked rib. Which lead to an xray, but everything came back clear. Ribs are just bruised/strained and I'm told to apply heat. </div><div>PT was cancelled due to the harness/treadmill thing being broken.</div><div><br></div><div>Then I had blood work.</div><div>I was hoping my liver enzymes would have gone back down but it seems they are up again. So now I'm waiting to hear back from neuro in regards to this. </div><div>It could be from my Imuran but I'm not entirely sure. </div><div><br></div><div>I've been starting to think of some fundraising techniques to use in order to raise some money to cover my medical expenses since I am still out of work.</div><div><br></div><div>My friend Nicole suggested using go fund me and I started a page. </div><div><div style="font-family: UICTFontTextStyleBody; -webkit-text-size-adjust: auto;">http://www.gofundme.com/83b4fw</div></div><div><br></div><div>I am surprised and blown away at the generous donations I have already received! It's so crazy to feel love and support from all over the country. :) </div><div><br></div><div>I also have a few friends willing to donate some stuff for raffle if I have an actual event, which I am seriously considering. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I think later this summer I'm going to have tshirts to sell as well. I'm hoping that all these endeavors will help pay for my medical stuff at least for a little while. </span></div><div><br></div><div>I've been thinking good thoughts about my SS trying to will it to happen mostly. </div><div>My friend Cyndee told me I can make it happen so I'm really trying! </div><div><br></div><div>Yesterday was a pretty great day. </div><div>I walked from the car all the way to the handicap ramp, which was pretty far! (With my walker that is) </div><div>The dentist was kinda torture since my teeth have become so sensitive from steroids and they use this water cleaner thing here and yikes! </div><div>But 0 cavities! :D </div><div>The dentist did imply my teeth were crooked and I need liners for the bottom but I declined. Who has the money for that? Not this girl! </div><div>The hygienist that cleans my teeth is nice and i know she means well but she asks me every time all the same questions about my disease. Lol she told me I could get help from the government to have someone come help me shower.</div><div>I left the dentist cleaning room and walked to the front desk again before sitting! Yay legs !! </div><div><br></div><div>After the dentist we headed over to Aquis for lunch and I had my usual goat cheese quesadilla!</div><div>We ran into Cyndee and her friend Andrea? Was nice to see her it's been awhile! </div><div>After we went to Bevmo where I got some ginger beer as well as a gingerbread beverage to try as well. </div><div>Ended our day with some yogurt from willow glen yogurt company and headed back home. </div><div><br></div><div>All of the above I shall miss greatly when I leave this town in a few short months. </div><div><br></div><div>Last night I went through some Halloween stuff and sorted my stuff from Andrews. One more tote to add to my Uhaul box! I was feeling particularly exhausted perhaps from the lack of steroids in my body, the fresh air, walking or the journey back to the stairs. </div><div>Regardless I passed out right in the middle of an episode of Hart of Dixie around Midnight. I woke up after 2 and turned off as the tv as it was so nicely flashing "no video input" as the Apple TV had shut itself off.</div><div>Sometime after 5 toast woke me up and again at 7. Then I slept until 11. </div><div><br></div><div>Today wasn't such a great day. Nothing in particular happened to make it that way, just incredibly tired and sore. It's not just like normal muscle sore either! It's that plus intense tingling on top of it. Think of how it feels when a limb falls asleep. Now think of that feeling intensified by 5. And it's both feet and lower leg along with both hands. </div><div>Needless to say I wasn't up for doing much today so I stayed home with my fur babies. </div><div>I hoping that tomorrow I wake up and feel top notch!</div><div>I will try and keep this updated a bit more! </div><div><br></div><div>Hope you all are well!!</div><div>Xoxo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-7889154879969567682014-03-23T19:15:00.001-07:002014-03-23T19:15:03.547-07:00Weekly updateSo I've kinda been slacking in updating the online blog. <div>Been doing a lot of old school journaling lately as it's stuff I am really not ready to admit to the world. Which says a lot cuz I'm a pretty open person. </div><div><br></div><div>Anyhow this week has been kinda lazy for me. I did something to my rib area on Wednesday between coughing and/it exercising and it's been painful since. </div><div>It's driving me crazy but I really have no patience when it comes to these things! Really fucking up my week.</div><div>Speaking of which let's touch base on the new steroid dosage of 50mg/mg every other day. </div><div>50mg day feel ok just sweaty and can't seem to sleep before 2am</div><div>5mg day feel good maybe great even? But so very tired. My body just wants to shut down. Usually 2nd week of new dose is better but then I'm starting to get worried about dropping to 0mg. Luckily I have an appointment with my neuro that week so if it's no good maybe we can figure out a better solution.</div><div><br></div><div>This week I started writing letters to my friends who will now be my new pen pals! Writing really helps make the muscles in my hand work together. Granted the writing isn't exactly beautiful but I'm working on it! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-8yVSWqtwGHE/Uy-VFrnCTZI/AAAAAAAAEzY/Km5ozPx1Pgo/s640/blogger-image-1299072350.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-8yVSWqtwGHE/Uy-VFrnCTZI/AAAAAAAAEzY/Km5ozPx1Pgo/s640/blogger-image-1299072350.jpg"></a></div>New selfie from the other day. It's hard to keep my balance and take a photo still! I cannot wait until I have better balance and I'm not always paranoid about falling. </div><div>Here's a better picture</div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-daW-czTJABQ/Uy-VEt_iUMI/AAAAAAAAEzQ/gr_T64JB-Mc/s640/blogger-image--1117462195.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-daW-czTJABQ/Uy-VEt_iUMI/AAAAAAAAEzQ/gr_T64JB-Mc/s640/blogger-image--1117462195.jpg"></a></div>I feel like I look so strange in this picture but I don't really know what I look like while using my walker SO now I know. </div><div>I think besides my steroid face I look pretty good considering! I just need to start looking into some different crocs for summer. These are like slippers inside and are not going to be good for the humid weather. </div><div><br></div><div>I did my pills on Friday night and I guess I didn't realize how overwhelming this actually looks until I took a photo</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-mGZk3kOoAag/Uy-VJX-a6ZI/AAAAAAAAEzs/ocDOFQaKTP0/s640/blogger-image--1068652048.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-mGZk3kOoAag/Uy-VJX-a6ZI/AAAAAAAAEzs/ocDOFQaKTP0/s640/blogger-image--1068652048.jpg"></a></div>I'm sure there are people that have it worse but I only ever used to take birth control and vitamin D for my deficiency. So going from 2 pills to a handful is a bit much. I try to keep it organized.</div><div><br></div><div>Today I woke up around 11 after passing out at about midnight. That's a lot of sleep but I woke up still feeling exhausted. </div><div>It's been a pretty boring day. I did my makeup and found a bow which I thought was both haggard and adorable but the best friend vetoed it. </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-yaunv4FbpNU/Uy-VHIuMB0I/AAAAAAAAEzc/V9HDAsT4QF0/s640/blogger-image-1768350373.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-yaunv4FbpNU/Uy-VHIuMB0I/AAAAAAAAEzc/V9HDAsT4QF0/s640/blogger-image-1768350373.jpg"></a></div>You can kinda see it in this photo haha but I'm not longer wearing it. </div><div><br></div><div>We finally tried Ike's sandwich shop today and I have to say it was delicious.</div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-GjPsTQZfCz8/Uy-VImO_hpI/AAAAAAAAEzo/pef3lRDTjsY/s640/blogger-image--869202942.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-GjPsTQZfCz8/Uy-VImO_hpI/AAAAAAAAEzo/pef3lRDTjsY/s640/blogger-image--869202942.jpg"></a></div>It was incredibly messy but the BBQ sauce was amazing! I definitely we recommend trying it to anyone who hasn't :) </div><div>That being said I have been looking I to possibly rejoining weight watchers. At least for a few months to try and get back on track. I just don't know if I want to continue having to pay $18 a month after the initial first 3 months. </div><div>We shall see, I feel like no matter what I do these days the scale doesn't budge because these damn ROIDS. I'm hoping in the next month when the larger dose stops dropping I will start to see some changes! </div><div>My lunch came with a blow pop haha I haven't busted that out just yet but I'm looking forward to it! I hope it's not a gross flavor :) </div><div><br></div><div>I'm counting down until my hair appointment with my friend Keara to try and do something with this hair! I feel like every time I wash it the red gets brighter! </div><div>Blonde roots are not pretty! I have no idea what we are guna do to try and get them to blend better but anything has to be better than this! Sadly my appointment isn't until April 26! Crazy. </div><div><br></div><div>Today I have done some stretches and stood for 10 minutes. I think I may need to do another round or two of 10 minutes. My quads are being a little crazy at the moment tho :) </div><div><br></div><div>I hope you all have had a great week! </div><div>I'm looking forward to this upcoming week :) </div><div><br></div><div><div class="separator" style="clear: both;">Xoxo</div></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com1tag:blogger.com,1999:blog-6979350231468925483.post-26842607480634607072014-03-16T04:43:00.001-07:002014-03-16T04:43:33.997-07:00Counting sheep....100, 99, 98Apparently there's a fine line between being tired and the actual need for sleep. High dose day provokes insomnia as per usual. It's frustrating because I wish I was sleeping hours ago! <div>I caught up on most my weekly shows besides scandal because that seemed far too serious for the mood I was in.</div><div>Got very excited that Veronica Mars movie was on iTunes but didn't have the password to watch it. Bummer but I can watch tomorrow. </div><div>So I started some Netflix show called Hart of Dixie, mostly because I thought it was a totally different show about country singers but turns out that's not it ha. </div><div><br></div><div>I think surfed Instagram for awhile under #physicaltherapy and while I did find a few inspiring people to follow a bunch were just like wrist therapy or actual therapists showing off their buff abs. Which I mean who can deny they like to look at a fit body? I wish mine was more fit. So anyhow I recorded a new walking video and then chugged some water. After I lay back in bed and started to get into episode 2 of Hart (which reminds me of my soul mate cuz that's her last name) when I started to feel weird. <br><div><br></div><div>Have you ever had like gas get stuck in your chest and it feels really painful? </div><div>That happened to me earlier (well like an hour ago) then I was convinced I was having a heart attack and I would die alone. Not because I'm emo and "oh poor me", but because Andrew was out drinking with friends and I guarantee the stupid top latch on the door is locked and my parents live roughly 3000 miles away. Nothing quite like feeling trapped and alone in your house!</div></div><div>Anyhow after a few moments of panic and a large burp I started feeling normal again, although now partially grumpy. </div><div><br></div><div>I finished my 3rd episode of HOD at around 3:15. I wasn't sure that I could actually turn off the bathroom light and turn on the nightlight without falling. It takes my eyes a few minutes to adjust to the darkness and as you all mostly know I need to be able to see my feet because I can't feel them. So I turned the tv off and just stared at the wall awhile.</div><div>Andrew got home around 3:30 and fixed the lighting situation and then promptly passed out. </div><div><br></div><div>It's now 4:05 and clearly you can tell since I'm updating my blog I am not sleeping. I guess it was bound to happen since I've been sleeping pretty well this past week. Although it could also be adrenaline from earlier or the little bit of caffeine in my decaf coffee. </div><div><br></div><div>Medical alert: caffeine allergy! </div><div><br></div><div>I still need to order my bracelet. It kinda took a back seat when I found out I would be moving and I haven't gone back to it yet. I will eventually the damn site just gave way too many style options. I feel like I should do a bracelet but maybe a necklace would be better? I am way too indecisive for such decisions. </div><div><br></div><div>So I guess I will write about PT even though I feel like I've already posted it everywhere imaginable. </div><div>I felt like it was a good session. I told her all my concerns and asked all my questions. She agreed that while it's awesome that I was able to do 26 laps that being down a few days after probably not good. She liked my plan to stick to doing 10 and try to do it every day or every other and then slowly once that gets easier keep adding on laps. </div><div>I asked about the recumbent bike and pool therapy and she said while those are good for every day exercise they won't help rebuild what needs to be done like walking in the harness will. She used some technical term that I I really have I idea what it means. </div><div>I beat my times on the treadmill which was my goal and walked further than I had previously in the hall. </div><div>They told me they couldn't believe how much I had improved in between sessions, and they had never seen such an improvement. I was blown away and wanted to give myself a pat on the back since no one has been doing the work but me, as hard as it may be. </div><div><br></div><div>After PT we sat in the court yard awhile since we had 45 minutes until my next appointment. It felt great to have the sun on my skin. I forgot how nice that is. Even though the sun typically hates me, </div><div><br></div><div>Medical alert: allergy to the sun! </div><div>No that's a real thing ask my mom! When I was younger they told me I was legit allergic. Like I would break out in hives and blisters. Shits weird! #palepeopleproblems</div><div><br></div><div>Well we headed upstairs and found the department. I was feeling nervous already since it was a new doctor and it was my first womens exam since becoming disabled. My first mistake was I had a coffee before the appointment and was feeling like I had to pee every damn 5 minutes! That combined with the water pill was not a good combo!</div><div>So my appointment was at 3:45, at 4:20 they call my back only to take my blood pressure and tell me a room isn't available yet. </div><div><br></div><div>So back to the waiting room. </div><div>At this point I'm starting to get annoyed! I mean I get that you had someone who showed up late, but how is that my problem? So they call me back at 4:35 almost a full hour past my appointment time. The assistant lowers the seat to appropriate height for me to sit down and gives me the gown that apparently now is the length of a crop top.</div><div><br></div><div>I change and wait for the doctor, she comes in and first wants to know why I'm wearing a mask and of course I tell her. This leads to more questions. I just want to scream "CHECK MY DAMN VAGINA ALREADY!" But I hold back. </div><div>They start with the breast exam and please tell me why my tattoos are always the discussion with some women feeling me up? I don't want to have awkward conversation. I just want to get this done and over.</div><div>She mentions the stretch marks and makes a type of frown face. Yea I told you they were bad lady! </div><div><br></div><div>So I onto the fun part. </div><div>She asked me to scoot down so my butt is closer to her. Well I can't feel my feet or see them so I try and do so but not having a lot of luck!</div><div>So finally I am close enough then she has me position my feet in the stirups or whatever they are called. </div><div>So between the numbness and my legs being so tired they don't want to stay up. </div><div>She calls in an assistant to hold my legs for me. HOW EMBARASSING! </div><div><br></div><div>So she dives right in and I'm thinking how it's gotta be almost over and she's all "oh I'm terribly sorry but this speculum doesn't have the right attachment" WTF?! You couldn't have seen this before you cranked my vag open?! </div><div>At this point I feel like someone is stabbing my foot. Assistant assures me my foot is in the spot exactly how it should be. </div><div>Finally the terror is over and they tell me to get dressed. Not even 5 minutes passes and someone is knocking in the door. They clearly know I'm disabled and need more time, but yet I'm feeling rushed. I tell her I'm not ready yet and she's all "can I get your friend?" Sure lady if you cannot wait 2 more minutes for me to put pants on by all means get my friend. </div><div>We finally leave Kaiser after 5pm and head home! </div><div>At this point the soreness has really set in yet I decided to watch some tv downstairs for a few hours. </div><div>Which makes going up the stairs later extremely difficult.</div><div><br></div><div>That brings us to this morning when I woke up feeling run over and wishing Someone why it give me a massage no matter how much I hate feet they need love too! Maybe I can get flora to opt to go for another pedicure soon! </div><div><br></div><div>Please excuse any typos it's getting late/early here and I type these on my phone. I am going to try and close my eyes now. </div><div><br></div><div>Xo</div><div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com2tag:blogger.com,1999:blog-6979350231468925483.post-55035551753120178732014-03-13T00:03:00.001-07:002014-03-13T00:03:05.530-07:00The facts of lifeSometimes I find social networking to be annoying. No matter how many times you repeat the same Information there's always someone asking the same questions. <div>I get that maybe you missed an update or two but come on. </div><div><br></div><div>And some of the questions are frankly none of your business, is that rude? Perhaps! Anyone who needs to know pretty much knows. </div><div><br></div><div>Anyhow back to basics! </div><div>Today was a bit lazy for me. </div><div>Yesterday I did 26 laps! Usually I sit down in between completing each round trip but this time I just turned around and went back. It took me a really long time to complete them all, but I did! </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-XIneNfuKFd8/UyFYFbzR2VI/AAAAAAAAEyA/FVgVjEFjjAg/s640/blogger-image-1130875737.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-XIneNfuKFd8/UyFYFbzR2VI/AAAAAAAAEyA/FVgVjEFjjAg/s640/blogger-image-1130875737.jpg"></a></div>Each lap is roughly 38 feet soooo 988 feet. Working my way up to that quarter mile of roughly 1320 feet. </div><div><br></div><div>I'm feeling it today though! </div><div>My legs, hips and abs Wowza!</div><div>I feel like my right leg is finally starting to get into a bit more of a normal stride. It's starting to seem less like a peg leg! </div><div>I keep trying to force myself to lead with that leg but my brain just doesn't want to get on bored. </div><div><br></div><div>Current steroid dose: 10mg/50mg </div><div>Face currently still blown up:</div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-Wg5PRsimES8/UyFYGwWZ5oI/AAAAAAAAEyI/7Uci5h6Ugr0/s640/blogger-image--42371452.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-Wg5PRsimES8/UyFYGwWZ5oI/AAAAAAAAEyI/7Uci5h6Ugr0/s640/blogger-image--42371452.jpg"></a></div>I keep waiting for the day that the moonface goes away and I can feel normal again. Well as normal as one can be in my condition. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-WuDJ92LrX8g/UyFYHtI6MRI/AAAAAAAAEyQ/kmKutUxOg-8/s640/blogger-image-849403357.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-WuDJ92LrX8g/UyFYHtI6MRI/AAAAAAAAEyQ/kmKutUxOg-8/s640/blogger-image-849403357.jpg"></a></div><br></div><div><br></div><div>I made some arrangements today for my move. Uhaul Ubox will be here May 28.</div><div>Shit just got real and kinda leaving me feeling stressed. </div><div>Stress is bad for the nerves and I could really go for a drink, but the hiatus continues! </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-BX9qfhP4Zys/UyFYId4B10I/AAAAAAAAEyY/AMCwfbq4Dzg/s640/blogger-image-481650166.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-BX9qfhP4Zys/UyFYId4B10I/AAAAAAAAEyY/AMCwfbq4Dzg/s640/blogger-image-481650166.jpg"></a></div>All I have to say is that my liver better appreciate this and show me some good numbers in April! </div><div>I thought once I started getting stuff booked I would feel better but I just Keep thinking of all the things I still have left to do! Packing is tough without full use of your legs. I need bubble wrap and boxes and able bodied person to help! </div><div>I have the quote for my truck shipment just need to arrange it and book my flight for the 31st. Then all arrangements will be made and hopefully I will feel less stressed out! </div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-PJj20RTrhvU/UyFYJPpGm-I/AAAAAAAAEyg/OZp_a-buGpA/s640/blogger-image-1975793256.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-PJj20RTrhvU/UyFYJPpGm-I/AAAAAAAAEyg/OZp_a-buGpA/s640/blogger-image-1975793256.jpg"></a></div><br></div>My hands have been extremely numb today. Not sure if it's because I am having sympathy nerve pain because my legs are so sore or because I feel extremely tired possibly from steroid withdrawal. I'm hoping that tomorrow they feel better. That way I can do my band/weight exercises and hoping I won't be too sore for my PT on the treadmill Friday. </div><div>I'm kinda tired of doing the treadmill if I'm being honest. It takes forever to get into that harness then I get like a total of 6 minutes of quality walking in and then I'm done. I guess it's easier for them to measure progress with the speed and such on the treadmill but I wish I could just walk the halls. Is that weird? Possibly.</div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I know they are just trying to help get me back where I need to be but I feel like I would benefit from more sessions then once every couple weeks. It's hard though when you don't drive. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I'm hoping once I get to Michigan and get settled in I can find a new PT place and doctor and neuro. Ugh once I find new medical insurance that is. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Also feeling stressed about some stuff that's not my place to talk about but just keeping some friends in my thoughts as I'm worried about them <3</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Bah well just writing this made me feel more stressed which wasn't my intention. To bad I didn't have some of these body relaxing edibles I keep hearing about.</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Okay I think I must close my eyes now. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Xo</span></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-71435045744452242612014-03-07T23:25:00.001-08:002014-03-07T23:25:20.076-08:00The never ending story of prednisone.When my doctor put me on prednisone last summer I was relieved and anxious for it to start working and making me feel better! <div>It seemed in a matter of a month it really had turned things around. </div><div>I went from my legs being so weak I couldn't get myself out of bed to being able to get up and to the bathroom on my own with the walker of course. </div><div>Over time I stayed on them and patiently waited for my immunosuppressants to kick in. </div><div>The doctors wanted me to do an every other day weening process which I agreed to as they said this way it would limit the negative side effects on my body. Sign me up! </div><div>Originally I started at 80mg a day then was moved down to 60mg. </div><div>Once the weening started I felt really crappy on my lower dose days. </div><div>For instance Monday I was 60mg and then Tuesday 55mg. I swapped them out every other day and then would drop again by 5mg. </div><div><br></div><div>Well this week (as you know if you have read this blog at all) started 50mg/10mg. </div><div>I must also disclose that I have been trying to cut out sugar as indicated by the neuro and have been logging food into my fitness pal. </div><div>That being said I've been feeling weird. </div><div>This morning I woke up feeling shaky and just off. I decided to have a cookie and see if it helped at all. It did make me less shaky. I checked my blood sugar which was 91 so it's not like it was extremely low or anything so I'm not sure what that was all about. And I managed to some bruise my finger which I think was from trying to squeeze more blood out then it wanted to give lol </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-U1fTAEyth_Y/UxrF3mFV8SI/AAAAAAAAExY/8Czy0cHD4TQ/s640/blogger-image--60155115.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-U1fTAEyth_Y/UxrF3mFV8SI/AAAAAAAAExY/8Czy0cHD4TQ/s640/blogger-image--60155115.jpg"></a></div><div class="separator" style="clear: both;">So anyhow I went about my day like I normally would but my legs were just feeling shakey and not as strong as they were last week. And I have been feeling increasing tired. </div><div class="separator" style="clear: both;">I read online that could be a symptom of steroid withdrawal which I guess makes sense. Usually by week 2 of the new dosage I will feel better about it. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">In the meantime it's a high dose day and as usual I'm sweating buckets and can't seem to cool down regardless how much water I drink! Stay hydrated is what I keep telling myself but that also means pee 300 times a day because you are on a water pill. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I just am trying not to worry or stress and just go with the flow which I am terrible at </div>Naturally which brings me to my next topic medical (or not so medical) Marijuana. I've been reading a lot online lately about medical marijuana helping with the effects of severe neuropathy. </div><div>I'm told the vaporizer will limit exposure to the lungs while the edibles will offer a full body calm that is equivalent to a massage. I honestly think I'm going to speak with my neuro about this at my next appointment. If I'm being honest it's been years since I smoked and usually it just makes me tired which wouldn't exactly be a bad thing when prednisone likes to keep me awake numerous nights a week. Anyone want to weigh in on this? I mean it can't be any worse than the drugs that are prescribed right? </div><div><br></div><div>A friend on Instagram mentioned that she uses these creams and they have been a life saver</div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-_pK2bRbTQyE/UxrF1xPIFvI/AAAAAAAAExQ/FaES0qdqnM4/s640/blogger-image--527427018.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-_pK2bRbTQyE/UxrF1xPIFvI/AAAAAAAAExQ/FaES0qdqnM4/s640/blogger-image--527427018.jpg"></a></div>Shout out to AK (leaving your name out for privacy purposes) </div><div>When I looked them up though it seems that the ones with the actual THC is only available in colorado, based on the web page :( </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-TWyhu-Ci1Tg/UxrF25kmIXI/AAAAAAAAExU/jBMF9JjAklc/s640/blogger-image-287319933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-TWyhu-Ci1Tg/UxrF25kmIXI/AAAAAAAAExU/jBMF9JjAklc/s640/blogger-image-287319933.jpg"></a></div>Anyhow they may be worth a go.</div><div>I have to say though at the moment most my pain is in my feet and my hands. </div><div>Hand cramping probably being the worst. My back pain has been pretty mild lately. The shooting pains tend to be going through my feet and into my toes again. Like a flash back to early last year before diagnosis. </div><div><br></div><div>Is that what happens when your nerves are healing? Your body goes through the motions of what previously was painful? </div><div>I really hope not I'm not sure I can handle stabbing hip and back pain again. Although if it's part of healing I will gladly suffer through. </div><div><br></div><div>I need to read some research on how nerves heal. The neuro said that they regrow something like 2mm a day. Based on my sensory loss I'm told that my damage is past the actual mylien and into the nerve itself. Basically that means this road to recovery is quite long and while I will make it through it may take longer than I previously had expected. </div><div>I feel like I can feel a bit more on my legs lately but I guess only time will tell. </div><div>Dr. Cho appointment in April. </div><div><br></div><div>Hopefully that day we can also stop at the blood draw and have my CBC and ALT tested again. I'm really hoping that my liver enzymes will be in normal range! I haven't had a sip of alcohol in over 2 months, but that liver just isn't cooperating! (Another reason why Marijuana is sounding good ha) </div><div><br></div><div>Anyhow I started this entry with one intent and ended with a completely different one. </div><div><br></div><div>Tomorrow is low dose steroid day.</div><div>I'm hoping I will feel awesome! </div><div>Flora is coming by with a movie and we are ordering take out and having gossip. </div><div>Laughter is really the best medicine and I should could use some human interaction before I turn into total cat lady status :) </div><div><br></div><div>That's it for now!</div><div><3</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-44952184123717026452014-03-06T13:35:00.001-08:002014-03-06T13:35:19.291-08:00Thoughtful ThursdayCould it possibly be that I've run out of things to say? <div>I mean I feel like each day I start writing a blog post but never finish it.</div><div>I guess maybe because I find myself boring and my day to day routine to be kind of a drag. </div><div>I long for a better time when I can enjoy the sunshine on my face (with SPF 50+ of course) a fresh squeezed lemon in my water and contemplate life with my loved ones. </div><div>I'm hoping in real life the scenario will be as serene as it is in my head.</div><div>Although I know the Michigan humidity will probably have my sweating worse than the prednisone, but hopefully by that point I can actually wear a pony tail. </div><div>Have you ever tried to do a ponytail while your hand was asleep? That's how mine feel on the daily and trust me it's hard! Maybe hair clips.</div><div><br></div><div>Speaking of hands being asleep, I woke up this morning and must have slept on my hand it was asleep on top of my normal numbness. It was the most bizarre feeling I have experienced. I shook it a few times and was able to shake it awake but sadly still numb. </div><div><br></div><div>Yesterday I spent most of my day going through drawers and trying to organize and pack. I did find my extra set of truck keys to give to the truck shippers. They still have the keychain from the last time if was shipped. </div><div>I found old valentines in my drawer that made me sad that this journey in my life is over. It really is an end of an era.</div><div>I threw away a bunch of things I found, like an old hair extension which I'm not entirely sure why I was keeping and a 5 year old prescription that I guess I wasn't sure If I was going to need again. Heh </div><div>Slimmmed down on the items in remaining drawers and put the rest into a box. Typically I hate packing and like to get it done early, but this situation isn't typical in the slightest.</div><div><br></div><div>I've been trying not to be too emotional and keep my positive attitude going since that seems to be what helps me best when it comes to this disease and my health. Although I feel like this disease has taken so much that I love away from me and that leaves part of me angry. </div><div>My ability to walk </div><div>My ability to use my hands for things like typing/writing (which I'm working on getting back)</div><div>My ability to drive </div><div>My independence </div><div>My job</div><div>Some of my friends </div><div>And now my relationship, Cali life and my fur babies. </div><div><br></div><div>It's really quite depressing when I put it down on virtual paper. The only thing that keeps me going is the idea that if I keep pushing I will get through all this. I mean I know I will have this for the rest of my life, but there are people that have reached a remission point where they don't experience any symptoms anymore. </div><div>Everyone has told me the first few years is the hardest and I can see why. </div><div>It really puts a strain on relationships and you always feel like a burden. </div><div><br></div><div>I feel like it's important that everyone knows I'm trying. </div><div><br></div><div>The other day I did 24 laps between rooms. I almost can't even believe it since there was a time when walk in only half a lap would wear me out so bad I had to take a break. I feel like even if no one else cares I will give myself a pat on the back for that! </div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-PwpLamZ0JiQ/UxjqFURTAvI/AAAAAAAAEw4/suNms43Oymc/s640/blogger-image--2037496325.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-PwpLamZ0JiQ/UxjqFURTAvI/AAAAAAAAEw4/suNms43Oymc/s640/blogger-image--2037496325.jpg"></a></div>Although with such an achievement comes the complete soreness of the next day and not wanting to really to much. Not that it mattered because my 50mg of prednisone yesterday had me sweating like I did a damn marathon! </div><div><br></div><div>Yesterday I had a conversation with my friend Samantha about my stretch marks and how I feel like I look like I've been gutted. They have gotten worse from December until now as you will see in the photo below: </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-qbOEUD70nKg/UxjqDufz5DI/AAAAAAAAEww/suCesaayd64/s640/blogger-image--114612224.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-qbOEUD70nKg/UxjqDufz5DI/AAAAAAAAEww/suCesaayd64/s640/blogger-image--114612224.jpg"></a></div>The top photo is my thigh and the bottom obviously my belly. Typically I would not be about showing off my belly but I am trying to be as honest as possible in my blog and I feel like I will be able to look back and see how far I've come. The neuro said these are caused by the high dose steroids and should stop once the dosage drops a bit. </div><div>I also started back logging my food on my fitness pal. Although they said I should be eating 1500 calories a day but when I googled it said 1250-1400 so I made some adjustments. </div><div>I'm also trying to eat overall healthier which I'm hoping that will help. Even if it's slowly I need to shed the weight I gained from these drugs and my double stuffed Oreo cookie addiction last summer. It's a real thing there was an article! Ha</div><div>I think once I lose some weigh I will feel more confident in my looks and my joints will have less weight to try and support! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-SWI6NUJfkLY/UxjqEgw55NI/AAAAAAAAEw0/g2fVVMsg0oY/s640/blogger-image-661509314.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-SWI6NUJfkLY/UxjqEgw55NI/AAAAAAAAEw0/g2fVVMsg0oY/s640/blogger-image-661509314.jpg"></a></div>I have always been very supportive of myself and my "different" qualities. I embrace the fact that I am bizarre and borderline strange. I never have fit the mold of "normal" ever since in my teenage years I discovered hair dye! </div><div>So I'm not quite sure why I have such difficulty with embracing the things that are different about me now. </div><div>My cheetah looking stomach, my zombie walk and even my wheelchair. </div><div>I feel embarrassed sometimes when I make a misstep or if someone sees me fall and I know I shouldn't but I do. </div><div>I'm trying really hard to embrace this new body life has given me, but damn is it hard! Part of me doesn't want to accept it because I don't want to always be this way! I know there's a chance I might be, but there's still a chance I won't and I'm holding off hope that one day I can get by with a cane. </div><div>Hell right now I would be happy to get by with just a walker. Before you think this post has gone into Debbie downer mode please know that it hasn't. I just want to be realistic. </div><div><br></div><div>I think once I have made the move and settled back in Michigan things will start to look up. Hopefully I can get around a bit better and do some walking outside. </div><div>I'm hoping to find a doctor that I like as well as physical therapy and keep on trucking along.</div><div><br></div><div>I'm so grateful for all the wonderful people in my life that have made this journey<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> just a bit easier. </span></div><div><br></div><div>There's so many things I am going to miss about California, I can't even begin to list them all, but for starters the people. </div><div>Just hoping this next chapter in my life is a little easier on me. This past year has been a bit rough. </div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-19458733775377891152014-03-01T17:49:00.001-08:002014-03-01T18:29:19.408-08:00Give me your energy!It's only been 3 days since my last post but I feel like I'm majorly slacking with updating. <div><br></div><div>I'm feeling exhausted today on so many levels. </div><div>Today is my high dose prednisone day which typically means I feel gross and don't want to leave my bed. </div><div><br></div><div>I've recently been trying to push myself with my laps and I think I may have gone a bit overboard yesterday between laps and arm cardio. </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-vhhmWyfhDQ0/UxKOGAH7n8I/AAAAAAAAEwM/S9ylnzxtNLI/s640/blogger-image-1336946493.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-vhhmWyfhDQ0/UxKOGAH7n8I/AAAAAAAAEwM/S9ylnzxtNLI/s640/blogger-image-1336946493.jpg"></a></div>That comes out to be 836 feet. </div><div>So there's 5280 feet in a mile. </div><div>1/4 mile would be 1320 feet. </div><div>Gotta add approximately 12 more laps to achieve that goal. Mind you I take a lot of resting breaks but I'm still building up my stamina and my muscles! </div><div>But when I reach 1320 (35 laps will be 1330) I will have a bit of a celebration for myself. It's good to have goals right? </div><div><br></div><div>Before we left the house earlier Andrew checked the mail and office for packages. It was like Christmas morning over here! </div><div>My amazon package came </div><div>A surprise package from my MT full of fun goodies to make me smile </div><div>New shirts from Debs</div><div>A surprise package from Ashley and Dennis for some coney dogs! Yum! </div><div>Prescription package </div><div><br></div><div>I don't think I've ever received that many packages at once. Definitely made me smile :)</div><div><br></div><div>Today I went in for blood work. </div><div>A complete blood panel as well as liver enzymes. I am really hoping the enzymes have returned to a normal level. Since that alone has kinda been stressing me out. </div><div>The girl at the counter told Andrew he was so helpful then asked if he was my husband or boyfriend. Which is kinda rude to even ask. But I felt myself kinda panic because I wasn't sure what to say, he replied "we're best friends". </div><div>It was nice and while I'm still bummed out that we couldn't make things work, being best friends is still pretty good. </div><div><br></div><div>While waiting in line for blood draw someone passed out in there. Whenever this type of stuff happens I find myself being so nosey and wanting all the details! They kept asking if he wanted to go to the ER. But sadly I have no idea what really happened. </div><div><br></div><div>The girl was able to get my vein on the first try today. I wasn't so sure at first since she was feeling around for quite a few minutes. She even apologized for the tiny pinch. And now we just wait and see what the results are. </div><div><br></div><div>After we decided to grab some lunch. We wanted wahoos which I wasn't sure if any existed in the area anymore and found one over by Andrew's work. </div><div>I ordered the usual 2 Cajun chicken taco plate.</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_XqK9eG79HQ/UxKXfc2DiKI/AAAAAAAAEwc/jxUP6c3tN-o/s640/blogger-image--1214953556.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_XqK9eG79HQ/UxKXfc2DiKI/AAAAAAAAEwc/jxUP6c3tN-o/s640/blogger-image--1214953556.jpg"></a></div>While the tacos still taste as good as I remember them the salsa wasn't quite the same. I hate when you remember something a certain way and then you kinda expect it to taste that way and when it doesn't you are disappointed.</div><div><br></div><div>Came back to the house after and was feeling pretty rough. My legs are tired from yesterday and then doing the bottom 6 stairs I was exhausted, I was like half laying on the next flight of stairs. Rollins was looking at me very disapproving like I had lost my mind (ok maybe I did for a minute) and he promptly let me know they were his stairs.</div><div>I probably would have stayed in that position longer if I didn't have to pee so bad. Which meant I had to make it up the next 8 steps pronto! </div><div><br></div><div>Hung out downstairs for awhile after emptying my bladder. </div><div>Opened all my packages and listened to some music with Andrew. </div><div>I decided I better head back upstairs before I got any more tired than I already was. 16 stairs on your bum is a workout, I feel like I was sweating an entire hour after I made it back up! (Thank you prednisone) </div><div><br></div><div>I finally kicked off my crocs and saw that my feet and ankles were swollen. </div><div>I changed into some pajamas and opened the window since I was dying over here. </div><div>Andrew got me a pillow to put my feet up and now I'm just waiting for the sweating to stop so I can try on my new shirts.</div><div>I wore my new dino shirt today and realized that regular tshirt collars kind of bother me. I feel like I'm suffocating when I wear them. Usually I would just cut it out and make it more of an off the shoulder shirt but I feel weird doing that since u literally just bought the shirt! </div><div><br></div><div>Anyhow I'm hoping tomorrow is a better day leg wise and that I can possibly crank out 24 laps? Gotta get into beast mode! (Don't hashtag beastmode it sparks the porn bots on Instagram).</div><div>It's kinda crazy looking back in my planner cuz there was days when I could only do 2 laps! Hoping my legs are just tired today and that tomorrow they will feel stronger than ever! </div><div><br></div><div>One day at a time ;) </div><div>Hope you all are having a good weekend! </div><div><br></div><div>Xo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-65724214669504640172014-02-26T19:13:00.001-08:002014-02-26T19:13:11.116-08:00All good things must come to an endThis has been a tough week for me emotionally. I don't want to go too in depth with things but Andrew and I have decided to continue our journey in life as friends only. I'm ok, having ups and downs but I will get through this just like everything else. <div>They say if you really love someone you want them to be happy even if it's not with you. That's exactly the case here. </div><div>I'm not angry or bitter, just sad it's over. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-H10VpcIueD8/Uw6tRahwbiI/AAAAAAAAEv8/2ZE9LhD0tik/s640/blogger-image--1174247465.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-H10VpcIueD8/Uw6tRahwbiI/AAAAAAAAEv8/2ZE9LhD0tik/s640/blogger-image--1174247465.jpg"></a></div><br></div><div><br></div><div>That being said I have given myself a few days to feel sorry for myself and the stress and emotions have definitely taken a toll on my body. </div><div><br></div><div>Please bare with me through all this and I really am thankful for everyone and their support through this transition over the next few months. </div><div><br></div><div>Today was better than the previous days and I had a chat with my brother and dad in the last few days about how I keep having to push myself to keep getting better. </div><div>Go into beast mode as my friend Mark told me. It's easier said than done to just focus on me when I have so many other concerns. </div><div><br></div><div>So today I decided to work on some laps, I'm not sure why I decided to do this after I showered but hey at least I did it right? </div><div><br></div><div>New record for me: </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-P4gzE_pdgrM/Uw6tQkA90aI/AAAAAAAAEv0/ah8nShY1OrI/s640/blogger-image--1424326326.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-P4gzE_pdgrM/Uw6tQkA90aI/AAAAAAAAEv0/ah8nShY1OrI/s640/blogger-image--1424326326.jpg"></a></div>I am covered in sweat but at least I finished what I set out to do today which was beat the 17 laps I did the other night. </div><div><br></div><div>Now I am going to dive back into vampire diaries and shut my brain off for awhile. </div><div>It's easy to just focus on mindless television especially while I'm home alone. </div><div><br></div><div>There's also a crazy storm outside and the wind is really whipping around and it keeps sounding like someone is tapping on the back window. It's creepy and I don't like it! </div><div>Leah suggested I watch a scary movie but since I'm already afraid of them I'm not sure that's the best idea hah </div><div><br></div><div>Thanks for reading xo </div><div><br></div><div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-27873071274695099382014-02-23T12:26:00.001-08:002014-02-23T17:04:21.838-08:00Gone fishing!Can someone please tell me why lately anytime anyone posts any pictures of Seafood I'm craving it? I don't even typically like fish, well besides like fish and chips, shrimp cocktail, scallops, sushi or a tuna sandwich. Ok I guess that is a bit more things then I previously thought I liked. <div><br><div>Someone mentioned crab dip and I wanted it immediately then I make it and it's gross. </div><div>Red lobster commercial and I want to eat as many lobsters as they will allow! Although I won't because I know I don't like lobster and will not order it. </div><div>Earlier today it was a bagel with lox. </div><div>I used to be about raw salmon but I don't like that much anymore these days either. I guess maybe I ate it a bit too much when I first dived back into "meat" eating and Andrew and I were all about sushi. </div></div><div>Never in my life have I had a bagel with lox but it looks amazing in photos. </div><div><br></div><div>Speaking of amazing looking food while browsing a menu a few weeks back for a brunch date I saw a picture of some eggs Benedict that looked simply amazing, it was "caprese" version and I really want to try it. Granted I have never had them at all though and don't even know if I will like the hollandaise sauce or whatever it is they put on the eggs but damn does it look good! </div><div><br></div><div>Someone on my Facebook said they got a membership to the hot sauce of the month club as a gift! How do I sign up for this? If anyone was ever looking to get me a gift this would be it! Haha I don't know where to get it from but it sounds amazing! I ordered some crystals hot sauce with my grocery delivery this week. Yum! </div><div><br></div><div>Speaking of which the driver was an hour late today! I felt like an asshole sending an email to complain but when delivery costs $12 they could at least show up during the delivery window selected right? </div><div><br></div><div>I'm pretty sure that I over did it yesterday. I'm really sore today and having a hard time getting around, which doesn't help since this water pill is making my bladder feel like the size of a penny at the moment! </div><div><br></div><div>I think perhaps sugar may in fact be my enemy. I had some gummy bears earlier and my stomach has been killing since, not to mention sweating! But it could also be because today is my high steroid day. </div><div>There's so many factors into why I could be having a crap day. </div><div><br></div><div>I long for the easier times when I would just wake up, go to work and come home. I miss driving and running errands as blah and boring as that sounds. </div><div><br></div><div>One day at a time </div><div>One day at a time </div><div><br></div><div>That's what I keep telling myself and so far it seems to be working to keep my brain in check. </div><div><br></div><div><br></div><div>I'm hanging in there folks hope you all are too <3 ! </div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-4357997518695001342014-02-23T00:20:00.001-08:002014-02-23T00:20:35.377-08:00Neon nachoToday has just been a weird day. <div>I'm not sure if it's because today was Gma's birthday or what but I've been in a bit of a funk. </div><div>Also could be that it's coming time for my lady friend to magically appear and make me want to stab people. </div><div>Based on how highly emotional I've been I probably should just go with it this month instead of skipping like I normally do. Before I get a bunch of lectures the doctor is the one who told me to skip my period because of my crazy pms. </div><div>Anyhow I was feeling very down and out since I woke up this morning. </div><div><br></div><div>Toast woke me up at 7am and I just could not fall back to sleep. </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-ou5otO6RAXw/UwmvSZbnDNI/AAAAAAAAEvI/dFLAAZTaU1U/s640/blogger-image-1866318138.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-ou5otO6RAXw/UwmvSZbnDNI/AAAAAAAAEvI/dFLAAZTaU1U/s640/blogger-image-1866318138.jpg"></a></div><br></div><div><br></div><div>At 8:30 I got up and took my blood sugar - 112. Still over 100 but lower than yesterday. </div><div>2:00pm - 118</div><div>7:30pm - 108</div><div>I may be a bit obsessive when it comes to certain things, so sue me. </div><div>I did however indulge in a few of the worlds best gummy bears that my soul mate Ang sent me. So I will be curious to see how tomorrow mornings reading goes. It said online that 11 gummies had 14g sugar so hopefully it won't be too bad! </div><div><br></div><div>I wanted to try and get my exercise out of the way so I did my laps early on in the day. I wanted to beat my previous score if you will of 15 laps. I was able to achieve 17 laps. I wanted to do 18 but my knee was all "peace the fuck out I'm done!" So I called it a day and stopped there. </div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-GmxRGr_CQgc/UwmvUWYqMlI/AAAAAAAAEvg/lt1XNYVOX-g/s640/blogger-image--35385150.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-GmxRGr_CQgc/UwmvUWYqMlI/AAAAAAAAEvg/lt1XNYVOX-g/s640/blogger-image--35385150.jpg"></a></div><div class="separator" style="clear: both;">So we finally measured the distance between the rooms! It's approximately 19 feet, so each "lap" is 38 feet! </div><div class="separator" style="clear: both;">So 17 laps puts me at 646 feet for today! </div><div class="separator" style="clear: both;">While I am really stoked on this as it's a new accomplishment for me it doesn't seem like that much when I googled this </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-Z9VBhTHO4Qo/UwmvT8vj_GI/AAAAAAAAEvY/AvUfuKFcGb8/s640/blogger-image-161790273.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-Z9VBhTHO4Qo/UwmvT8vj_GI/AAAAAAAAEvY/AvUfuKFcGb8/s640/blogger-image-161790273.jpg"></a></div><br></div><div class="separator" style="clear: both;">Regardless I felt accomplished. </div><div class="separator" style="clear: both;"><br></div>I ordered sushi from blowfish via the door dash app, seriously though it has to be my favorite new app. It just makes it incredibly too easy to be lazy, but considering I can't drive and I don't always want to have to ask Andrew to get me stuff it's a nice option. </div><div><br></div><div>I caught up on shameless and really wish someone would watch it so we could chat about it! </div><div><br></div><div>I also painted my nails: </div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_CtzumNLGrw/UwmvTF0l-LI/AAAAAAAAEvQ/-tY0C0Lk1Xs/s640/blogger-image--432786284.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_CtzumNLGrw/UwmvTF0l-LI/AAAAAAAAEvQ/-tY0C0Lk1Xs/s640/blogger-image--432786284.jpg"></a></div>Neon nacho and fastlane </div><div>Flossgloss.com</div><div>Yes they look like a 5 year old did them but once I get that excess polish off they will look decent. </div><div>I was just telling my MT that my toes still looked good. Maybe I should get pedicures more often! I got this on 2/1 and they still look pretty damn good. I did however feel like my foot was being sanded off at one point so maybe not too often.</div><div><br></div><div>I spent a good couple hours downstairs on my actual computer pecking away at the keyboard. A lot of backspacing and retyping, but typing none the less. I started typing up what could some day be my book. It seems pretty boring so far though. I am still trying to jazz it up if you will. At this point I am just writing it for me to exercise my brain and my hands! It's a good therapy in my opinion. And if by some crazy chance I do some day publish for the masses then so be it. </div><div><br></div><div>I was just impressed I was able to get into my computer chair and everything without any real issue. </div><div>I then boosted myself back up the stairs and Indulged in some vampire diaries. </div><div><br></div><div>I just dropped my expandable file on my toe and while it hurt quite badly at least I could feel it right ? </div><div><br></div><div>Well I'm getting sleepy so I think that will be all for this evening. </div><div><br></div><div>Xo</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-59011351599370963502014-02-22T07:32:00.001-08:002014-02-22T07:32:44.259-08:00Like me on Facebook :)If you're reading this and you like it, please give my Facebook page a like if you haven't already! <div><br></div><div>https://www.facebook.com/Rubyredcoatdiamond</div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-39724397922573399082014-02-21T21:21:00.001-08:002014-02-21T21:21:07.475-08:00One is the loneliest numberSo I've been trying to check my sugar more regularly just be be more proactive. <div>Today I took all my meds and then an hour later I took my reading before eating. </div><div>It was 117. </div><div>My doctor told me that it should be below 100 in fasting state although American diabetes association website said 130. So of course I freak out and text my mom and ask if she thinks my medication could have skewed the reading at all. I try to just brush it off as I will try again tomorrow as it was just a bad reading and I did have sugar last night before bed. </div><div><br></div><div>Then I decided to jump right into my exercise for the day. I downloaded a podcast and stood at my walker.</div><div>Around minute 30 my knee started acting wonky and I wasn't sure I would make it past my last time of 31 minutes. </div><div>While I was standing at my walker Toast was trying to get my attention as she was wanting to be fed. </div><div>She started loving up my legs, then tried to open the drawer, loved up my walker and lay there for awhile. So then she decided she was going to get my attention so she jumped on top of my mini fridge fridge and put her front paws onto my walker and grabbed my arm. It was seriously so cute I wish I hadn't been focusing so hard on standing up right so I could have gotten a picture!</div><div>So it turns out being in competition with myself is quite beneficial as I made it past 45 minutes! </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-8vFeFovZfkU/UwgzwZ06UGI/AAAAAAAAEu4/-Nhz-81bzxI/s640/blogger-image--1145277070.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-8vFeFovZfkU/UwgzwZ06UGI/AAAAAAAAEu4/-Nhz-81bzxI/s640/blogger-image--1145277070.jpg"></a></div>My legs and knees were quite blotchy and purple after but hey did it! I was quite impressed with myself although my knee I noticed wants to lock into place which I'm not entirely sure how to break that habit. </div><div><br></div><div>The rest of my day was quite laid back, I went through old emails, Facebook posts and appointments to try and put together a timeline of my year last year. I figured if I do decide to try and write a book one day I want to have all my dates so I can paint the appropriate picture. </div><div>While looking through everything though it started to really bum me out. </div><div>There was so many things I would have rather been doing then feeling like crap and so many things I missed out on while I was trying to figure out what was wrong with me with what seemed like no help from regular doctors. And let's not mention all the money I spent on my health instead of something fun! </div><div><br></div><div>After I did this and worked on my typing for a bit it was almost time for Andrew to come home. I was starving but figured I would wait for dinner instead of getting a snack in between. We ordered a carry out from Opa! The usual location we go to was closed so we ordered from a new one. The gyros didn't quite taste the same though so it was kinda disappointing. </div><div><br></div><div>After we eat I start to feel a bit weird and start to get a headache. </div><div>I decide to check my sugar levels again. </div><div>For some reason I decide to prick my ring finger which is one of the more numb fingers I have and let me just say while it was numb it hurt like a bitch! </div><div>Sugar level 183. </div><div>I haven't even eaten any sweets today! It has to be carbs. I read online that a high reading can also be brought on by stress or a virus that your body is trying to fight.</div><div>I'm going to try again tomorrow and see what happens. </div><div><br></div><div>These past few weeks I have been feeling very emotional. I'm trying not to be but my self esteem is feeling pretty low with my current appearance. </div><div><br></div><div>As much as I have been enjoying wraps lately I think perhaps maybe I need to cut back on my carbs and dairy intake.</div><div>Seems no matter what I do the steroid weight doesn't seem to want to budge. </div><div>But I can't stop trying since I won't be off the steroids until August. I need to get something in the works that works! </div><div>Weight watchers worked before but I'm not sure I want to spend that $18 a month on it or if it would even work with everything else I have flowing through my system. But I need to do something! </div><div><br></div><div>I sent the information requested to the SS office on Wednesday. So here's hoping that I hear back soon.</div><div>I don't want to plan anything until I know what is going to happen with that. </div><div>I would like to visit Michigan in the summer although from what I've heard from fellow Cidp patients the heat triggers symptoms as well. </div><div>I remember it being kind of bad but wasn't sure if it was from the IVIG or just this stuff in general.</div><div><br></div><div>Just trying to take things one day at a time but some days I find that hard cuz I want to plan ahead ya know? </div><div><br></div><div>Oh well that's all for now I am still trying to figure out video posting to this blog but perhaps a new video tomorrow on my Facebook page ;) </div><div><br></div><div>Xo </div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-27468903507651641922014-02-20T16:26:00.001-08:002014-02-20T20:05:50.336-08:00The twilight zoneHaving a weird day.<div>Woke up at 7am and stayed up which is the first strange thing considering most the time I'm so tired I can barely keep my eyes open.</div><div>My hands feel very tingly in a different way and the optimistic side of me feel like maybe they are finally "waking up" from the numb feeling that has been going on for the last year. </div><div>I did some writing today just to get my hand muscles moving and it looked decent. </div><div><br></div><div>I also have been having tingly sensations in my toes which I have never had before. Almost like that feeling that comes over you when you get a chill. Not sure if it's good or bad but it's just different. </div><div><br></div><div>I noticed earlier while massaging my feet that the arches of my foot and the heels tend to have more feeling then the ball of my foot. I'm not sure why that is but I found it interesting. </div><div><br></div><div>My leg muscles as a whole are kinda twitchy today and even pretty tingly. My knee is feeling like it needs to crack but it won't and my left ankle has been having a really nice pop which it never did before. </div><div><br></div><div>Basically my whole day just feels off. Not in a bad way just a bizarre way. </div><div><br></div><div>SO...</div><div>Andrew has an upcoming trip to New York in May. I am honestly thinking of staying home by myself. I had wanted my bestie to come out but the timing and such isn't going to work out. </div><div>I mean as long as I have the groceries delivered before Andy leaves I should be ok. My room will be stocked with water and snacks and I can mosey on downstairs for dinners. </div><div>As long as I have him leave the top lock undone I can call on Keara or Cyndee if I need anything since they have a key.</div><div>Part of me is nervous that something will happen but I can't constantly be a worry wart right? Id just need someone to check my mail for me. </div><div><br></div><div>Although May is still a ways away and I could have vast improvements by then.</div><div>It would be nice if I was able to open the door so I could at least use the door dash service while home alone. </div><div><br></div><div>It would also help for friends to come by if I could actually answer the door. If I had a second manual wheelchair it would be easier but at this point I don't. If only the bottom two floors were combined into 1. Oh balance! </div><div><br></div><div>I started reading a book that was recommended by another CIDPer "the two kinds of decay", it's a memoir and the woman who wrote it also had a version of what I have. In it she says she never got herself a wheelchair because she never wanted to admit that she could possibly never walk again. </div><div>I don't feel like needing a little extra help is admitting defeat. I mean sure there are days when I want to push myself to the limit and do as much as I can ( even when those things are really things I know I can't do) but there are days that I am so exhausted that I need a little assistance of my chair. </div><div>On those days when someone has to push me around I feel like such a burden though. I try and keep those negative thoughts to myself though. </div><div><br></div><div>All my family and friends have been very supportive in helping me get around and been quite understanding of my condition. Everyone keeps saying when this journey is over I should take this blog and turn it into a book.</div><div>I'm not sure anyone would really buy it and let's face it you have all read it already lol! </div><div><br></div><div>I saw something on the news last night that kinda upset me, I don't usually watch the news but for some reason this week the tonight show is staring at 13 instead of 11:30. </div><div>It was about lawsuits that disabled people are filing. It was all for the dumbest shit! One store was sued because they bathroom placard was square instead of a triangle. Really? That's what the lawyers are spending their time focusing on? A damn sign? </div><div>I would love to have easier handles and be able to lock and unlock the bathroom door myself. Hell half the bathrooms in Michigan that claimed to be "handicap" didn't even have room for a chair. </div><div>Another lawsuit was that the handicap stahl door was hung a half inch too high.</div><div>It said there was over 7,000 lawsuits filed and only filed by approximately 30 individuals. I would love to know who these individuals are and how they have so much damn time on their hands.</div><div><br></div><div>I mean don't get me wrong I have plenty of time on my hands but no time for that bullshit. </div><div><br></div><div>I just spent the last hour finishing that book. While I'm glad there was a positive recovery I felt the book was a bit all over the place. Which made me then think I could possibly write a book about this horrific stuff that has been happening. </div><div><br></div><div>I find a lot of what happens frustrating. </div><div>I do not know how to act as a disabled person and therefore I feel like I try to hard to make myself and things seem normal. Then if I feel like a friend, family member or my boyfriend aren't putting in the same amount of effort I get upset. </div><div>Perhaps it's from the drugs but I just can't help it. None of us have ever dealt with this before so we don't exactly know what we are doing. </div><div><br></div><div>I keep trying to tell myself just one day at a time but as a person with little patience I want change now! </div><div>I guarantee the things I long for the most, most of you probably take for granted on a daily basis. </div><div>I feel like they are all things I took for granted as well until they were taken away from me. </div><div><br></div><div>* i would love to be able to get out of bed without putting on shoes. My poor dad the first month I was really sick he would come in my room whenever I text him and lace up my running shoes. Then help me to and from the bathroom and take them off. Thankfully I have slip on crocs now but still I wish it wasn't such a process</div><div><br></div><div>*To be able to stand and take a shower </div><div>*Blow dry my hair or brush my teeth in front of the big mirror </div><div>*Sleep without worrying my leg is guna kick out and swiftly kick an animal out of bed</div><div>*Have good enough balance to be able to pull my pants up and down and perhaps one day even wear real jeans again with a zipper and button</div><div>*Wear a flip flop or my toms anything besides crocs </div><div>*Walk up a stair instead of pushing my body up one by one. </div><div><br></div><div>That's just a few to say the least. </div><div><br></div><div>I don't mean for this post to sound negative at all, just a bit of venting. </div><div><br></div><div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-57711281242895217442014-02-19T20:34:00.001-08:002014-02-19T20:34:24.043-08:00PT, stairs and babies oh mySo today was my PT appointment, I was feeling nervous/anxious for some reason and I wasn't really sure why but I was experiencing some tummy troubles while waiting for Andrew to pick me up. <div><br></div><div>While coming down the stairs I caught a glimpse of my hugely swollen midsection covered in stripes and I felt instantly depressed. That mirror is in a terrible place. My legs look normal and yet from the waist up I look swollen and blob like. I just keep telling myself that when this is all over and I can walk again it will all be worth it. As long as I can walk it will definitely be worth it. </div><div><br><div>We left the house promptly at 2:30.</div><div>My legs were a bit wobbly from my 30 minutes of standing last night! Yes 30 minutes go me! </div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-8TBwSSgyKGM/UwWFwqHfRfI/AAAAAAAAESE/G2d2j6UDPW8/s640/blogger-image-962210833.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-8TBwSSgyKGM/UwWFwqHfRfI/AAAAAAAAESE/G2d2j6UDPW8/s640/blogger-image-962210833.jpg"></a></div>I managed to make it into the car without much of an issue. Andrew had to help me down the one stair but other then that I did ok. </div><div>The drive there was short, yet the parking took forever as always. You would think such a large place would have a better parking arrangement. I mean the lots are huge but there is never any parking! The only time the lot is some what empty is when I have an appt at like 8am. </div><div>Since my body loves to attract every germ necessary I sport this fantastic mask!</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-CUZfh-DK-yQ/UwV3hR1ku5I/AAAAAAAAERs/kU3Qi73HkRM/s640/blogger-image--2009628190.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-CUZfh-DK-yQ/UwV3hR1ku5I/AAAAAAAAERs/kU3Qi73HkRM/s640/blogger-image--2009628190.jpg"></a></div>Don't be jealous, you can pick up your own at walgreens ;) </div><div>A little boy walked past our car while I had it on and I heard him say "SHE'S WEARING A MASK!" Maybe masks are cool to little kids? I don't know. </div><div><br></div><div>Once we are parked and Andrew pushes me to the office we arrive promptly at 3pm to the front desk. My appointment was at 3 so it was perfect timing and we only waited a few minutes for Ericka. </div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-G_sjg0GEpJY/UwWFxfqQpXI/AAAAAAAAESM/SHBctF0NL1E/s640/blogger-image-1375200765.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-G_sjg0GEpJY/UwWFxfqQpXI/AAAAAAAAESM/SHBctF0NL1E/s640/blogger-image-1375200765.jpg"></a></div>Ericka calls us back and we go into her room and discuss how I have been feeling with the exercises. </div><div>Been feeling pretty good, still hate the balance exercises the most especially leaning back. </div><div>Still using the level 2 orange band for my bridges and ankle pumps. The sitting exercises with the ankle weights are my favorite over sitting without ankle weights. </div><div>I tell her mostly I have been working on doing laps and standing. She marks all of this down which I assume she puts in my chart at some point.</div><div><br></div><div>Then we head to the gym to do the treadmill. There's a kid sitting in the hall on his iPad. He's probably like 10 he has his feet kicked out. I get it he wants to be comfortable, but do you think he bothered to move his legs while we were coming through with a wheelchair? No he sure didn't. I wanted to call him a little shit or yell "oh don't mind us we will get through" or "thanks so much for your accommodation" but I figured that would make me look like a giant shit and well I'm really not. </div><div><br></div><div>I feel exhausted today before I even get on the treadmill and I'm just over all feeling slow. The harness feels like it takes an eternity to get on today. My standing is ok but my legs are so shakey from my muscles being tired. </div><div>Plus on the floors In there my walker slides and it's a bit harder to stand in one spot without someone like blocking my front wheel. </div><div><br></div><div><br></div><div>We do 3 laps as always, each lap this time was approximately 2 minutes long and at speed between 1.0-1.1 (last times laps were at a speed of 0.7-0.9). I laugh and tell Ericka not to record them be because I wanted better times then last time and she assured me my form and endurance were better this time. </div><div>After we finish the treadmill and remove the harness etc we head to the hall to do some real walking. I feel like I always do better at this then the treadmill. I'm not entirely sure why that is.</div><div>I walk down the hall all the way and then turn around and walk back to my wheelchair. Before I would always just walk the one way and then sit down. </div><div>They said they are impressed with the improvement I have made just over the last month. My stamina has improved and they said they think it's because I have been doing my laps and standing exercises at home. They said I am doing a great job and while it's a slow process I have definitely been making progress.</div><div>Goal now are as follows:</div><div>* Incorporate a few of my laps to include my ankle weights. She said start small like maybe 2 laps </div><div>* continue exercises with orange band and start to use green level 3 band for at least 1 set of 10</div><div><br></div><div>Next appointment March 14 so here's hoping for even more improvement by then! </div><div><br></div><div>After the appointment we went over to any friend Keara's house to see the new baby. </div><div>There was a step up onto the sidewalk which seemed easy enough but my legs were so tired. </div><div>There was only two steps to the porch and then one to get inside. Andrew helped me arrange my walker in a way that I could use it to get up the stairs. </div><div>So I finally got into the house and settled in on the couch. </div><div>I wasn't sure if I was going to hold baby Hazel because my hands are so numb and arms are weak. Keara propped her up with some pillows though! </div><div>I'm glad I held her she's such a little cutie and has the most adorable facial expressions already! </div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-wwQOxd62JMA/UwWFy2f0kBI/AAAAAAAAESc/ZkeEMovlunA/s640/blogger-image--591497898.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-wwQOxd62JMA/UwWFy2f0kBI/AAAAAAAAESc/ZkeEMovlunA/s640/blogger-image--591497898.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-HEi13099ehA/UwWFv8rouZI/AAAAAAAAER8/1i8vVlhlFWM/s640/blogger-image-2031733757.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-HEi13099ehA/UwWFv8rouZI/AAAAAAAAER8/1i8vVlhlFWM/s640/blogger-image-2031733757.jpg"></a></div>I just want to pinch her little cheeks! I couldn't believe how little she actually was, in photos she looks big but she's just a little tiny girl. She opened her eyes for a little while Andrew was holding her but I wasn't able to get a good pic.</div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-Oe7Y-1RQ7m4/UwWFyGtwx1I/AAAAAAAAESU/cO5TXcnSzRw/s640/blogger-image--597571286.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-Oe7Y-1RQ7m4/UwWFyGtwx1I/AAAAAAAAESU/cO5TXcnSzRw/s640/blogger-image--597571286.jpg"></a></div>See she's so tiny! Anyhow it was nice to hang out with friends for a bit, got to see Mama Frost and Erin stopped by as well so it was great to see her! </div><div>Made the long trip through the house to the bathroom and got paranoid my walker wasn't going to fit through the door but it did thankfully! </div><div>So we left a little while ago since it was starting to get dark outside and I don't do so well In the dark when I can't see my feet. Plus Andrew had to finish up some work since he left early to take me to my appointment. </div><div>The step out of the house wasn't bad, my legs were shaking and I could tell they were tired though. The other 2 steps were a bit more scary as the position of my walker wasn't an easy one, Andrew was able to do it in a way that I felt comfortable though and I successfully made it down. </div><div>Keara and Erin said they wanted to clap for me so that made me feel good. It's nice when people see all my hard work paying off. Even if it's something small like doing a few steps. </div><div><br></div><div>Got back into the car without any issues since andrew backed it up and I didn't have to do the weird curb step. Came home got into the house pretty much by myself. That step up is a lot less scary than the step down. I don't know why that is. My legs feel like jello and I pushed myself up the first flight of 6 stairs took a few minute rest and then up the next 8. </div><div><br></div><div>Now I am just sitting in our "dining room" which we use as an office and hanging out for a bit with my cute boyfriend while he cooks dinner.</div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-4aUKhq65yuE/UwWFzvJh30I/AAAAAAAAESk/gdEGTbM7Z2s/s640/blogger-image-1194889097.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-4aUKhq65yuE/UwWFzvJh30I/AAAAAAAAESk/gdEGTbM7Z2s/s640/blogger-image-1194889097.jpg"></a></div>While I feel totally exhausted today I feel so accomplished. It was nice to get out of the house for a bit and to get my legs moving. Today I did 55mg of prednisone and while I felt sleepy at least I didn't feel gross like the other day on the 60mg. Crazy what a difference 5mg can make. </div><div>Although I could also be tired because I stayed up late watching vampire diaries like a teenage girl ha ha!</div><div><br></div><div>I'm really hoping that when I ween down to 50mg. I will see a real difference and will be feeling good as can be! Fingers crossed. Won't be there for a few weeks but it will come up quick. </div><div>The PT and I were discussing the prednisone earlier and while it's doing gross stuff to my body it is helping my nerves be able to heal so it's good. They said since I'm young my skin will probably bounce back rather quickly. I'm not sure that is the truth but I like it. </div><div><br></div><div>Dinner was fantastic! Andrew cooked us some pierogis, I keep saying how amazing they tasted and he told me he coated them in butter. Everything is better with butter! </div><div>I just made the venture up the final 16 stairs. On stair 3 my leg decided it wanted to kick out and I almost slid back down but somehow caught myself. </div><div>My muscles are so very tired and I'm feeling very tingly. I think tonight may be an early night for me. </div><div><br></div><div>I hope everyone is enjoying their week do far. </div><div><br></div><div>Xo </div><div><br></div></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-25922717724011765922014-02-18T18:42:00.001-08:002014-02-18T18:42:33.812-08:00Sweet as sugarSo since it had been awhile since I checked my blood sugar (since July to be exact) I figured I probably should give it a go. Especially since I've had a mega sweet tooth lately and gained 30 pounds from my fabulous Steroids.<div>So I mosey on into the hall to get my Meter and decide to check it out.</div><div>Probably not the best idea since I just had consumed my valentines candy a few hours before but better to know than not to know right? </div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-X7pEdGIXOIw/UwQaF--07KI/AAAAAAAAERY/xqDTkdEeLak/s640/blogger-image--1329020706.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-X7pEdGIXOIw/UwQaF--07KI/AAAAAAAAERY/xqDTkdEeLak/s640/blogger-image--1329020706.jpg"></a></div>Still in the clear! Doctor said as long as it's under 160 normally and 100 fasting it good. So at least that is a good thing right?</div><div><br></div><div>Heard back from my neuro in regards to weening and the steroids. </div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-xuUFGL6ftww/UwQaFFSmsII/AAAAAAAAERQ/C0v_V4G54Fk/s640/blogger-image--1487466845.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-xuUFGL6ftww/UwQaFFSmsII/AAAAAAAAERQ/C0v_V4G54Fk/s640/blogger-image--1487466845.jpg"></a></div><div class="separator" style="clear: both;">Sadly based on my calendar this will take me well I to August. As much as I would love for that to just be here already and off the steroids and perhaps less a moon face I refuse to wish away the months! Every day is a new day to make progress. And I'm hoping every day will get easier and easier and that my body will accept the lower dosages of steroids! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Also can I just say how OCD I have been lately with keeping track of symptoms and progress and how I'm feeling? When given this planner from my bestie for Christmas I wasn't sure I would use it but it's come in handy! </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-H1jP_5hNmXQ/UwQaEL0DTCI/AAAAAAAAERM/9oVG8wM0Gmk/s640/blogger-image-291423248.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-H1jP_5hNmXQ/UwQaEL0DTCI/AAAAAAAAERM/9oVG8wM0Gmk/s640/blogger-image-291423248.jpg"></a></div><br></div>I was told by several people that keeping a journal of symptoms was important to report back to neuro. So far it has been good and then I can make my list of questions and concerns for my next appointment. So far it's been working out really well. </div><div><br></div><div>Minor update I know but I have been a little obsessed with blogging :) </div><div><br></div><div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com0tag:blogger.com,1999:blog-6979350231468925483.post-91711331004677062852014-02-18T03:06:00.001-08:002014-02-18T03:41:16.544-08:00MehWell today was a rough day. <div>This week started 60mg/10mg and 10mg day I felt fine, but today 60mg I felt like I was run over. Was sweating uncontrollably, stomach ache, tired, achey and in combination with my soreness from yesterday's workout was not a good combination. </div><div>I emailed my doctor to see if perhaps we can ween down the higher dose days and hoping she will respond soon. </div><div>I don't think my body likes that large of a jump but last week was 15mg/60 so I'm not sure why 5mg would make that much of a difference but drugs are funny. </div><div><br></div><div>I have to say though that I am glad I have my fellow Cidp ladies to lean on during these days when I'm feeling miserable. Had a nice chat earlier today, it's just nice to have someone who understands what I'm going through. I have a lot of love and support surrounding me and I am so grateful for that but sometimes it's hard for people to relate to me. </div><div><br></div><div>We watched the new tonight show tonight and The evolution of hip hop dancing skit was hilarious. I love Jimmy Fallon! I'm very curious to see what Seth Meyers does with late show. </div><div><br></div><div>I'm feeling very tingly at the moment, I took my evening gabapentin. I feel tingly in a strange way. Especially my hands. I noticed that since I cut my nails my finger tips are more sensitive. Is that weird? I feel like it's kinda bizarre, but everything about my body is these days. </div><div><br></div><div>I'm getting nervous about my PT appointment Wednesday. I don't know why but I always get nervous. I'm hoping to get the harness on the first go and beat my times. Last time I believe it was;</div><div>2 mins 30</div><div>1 min 30</div><div>1 min 45 </div><div>I can check with Ericka when I get there.</div><div>I know Christina said it was over 6 minutes total, but I can't get the numbers to add up! </div><div><br></div><div>Anyhow my goals sometimes are a bit far fetched. My goal is still to be wheelchair free by my birthday. I am not sure if that's going to happen but I'm staying positive. </div><div>I am starting to feel like I can feel my muscles working more in my legs. I know that sounds stupid or maybe it's all In my head. Just know that my Cidp anniversary is coming up in June and I really want some noticeable differences to happen by then. </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-nEtzgCB6mDA/UwM-wxXXq9I/AAAAAAAAEQg/FExuYGiEHx0/s640/blogger-image--1840699846.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-nEtzgCB6mDA/UwM-wxXXq9I/AAAAAAAAEQg/FExuYGiEHx0/s640/blogger-image--1840699846.jpg"></a></div>June 3, 2013 admitted to hospital and June 5, 2013 was diagnosed </div><div>June 7, 2013 first IVIG </div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-4iZGJ2TqGr4/UwM9YkLEmCI/AAAAAAAAEQM/XChpBYRtXNc/s640/blogger-image--265226405.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-4iZGJ2TqGr4/UwM9YkLEmCI/AAAAAAAAEQM/XChpBYRtXNc/s640/blogger-image--265226405.jpg"></a></div>So hopefully by June 5, 2014 I will be back to more of this version of myself</div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-sqfoWmP3MI0/UwM9ZVXlr_I/AAAAAAAAEQQ/VlAPacf2_lo/s640/blogger-image--502854229.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-sqfoWmP3MI0/UwM9ZVXlr_I/AAAAAAAAEQQ/VlAPacf2_lo/s640/blogger-image--502854229.jpg"></a></div><div class="separator" style="clear: both;">Let the count down begin</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-pTpat7i7eOQ/UwNAEjHc3FI/AAAAAAAAEQs/aTWKy-3RPbI/s640/blogger-image-1549567789.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-pTpat7i7eOQ/UwNAEjHc3FI/AAAAAAAAEQs/aTWKy-3RPbI/s640/blogger-image-1549567789.jpg"></a></div><br></div>That's 107 days for constant improvement! I think if I can 2 additional laps a week that's 30 more. </div><div>I really have to measure the distance between my rooms so I know how much I'm actually walking! </div><div><br></div><div>So thanks in advance to everyone who have been my constant cheerleaders! </div><div><br></div><div>For as tired as I was all day I was hoping that I would have passed right out. But here it is 3:30am and I'm still awake. </div><div>My stomach is angry something fierce. I was glad to see a ginger beer in my fridge! So I've just slathered on my stretch mark cream and dived into vampire diaries like a teenage girl ha ;) </div><div>Oh Boone from lost with terrible hair! </div><div><br></div><div>Missing my amigas lately and I hope I get to see them all soon <3 </div><div><br></div><div>I just want to say that I know this has been a hard journey for all my loved ones involved and it's all a learning experience for me and all of you. Thank you all for your patience and understanding through all of this. I love you so much. </div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-VROqfxQNPhw/UwNG2K5RSuI/AAAAAAAAEQ8/Neve2BIvzqE/s640/blogger-image-1355008966.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-VROqfxQNPhw/UwNG2K5RSuI/AAAAAAAAEQ8/Neve2BIvzqE/s640/blogger-image-1355008966.jpg"></a></div><br></div>Ruby Redcoathttp://www.blogger.com/profile/04636155373778640570noreply@blogger.com1