Monday, January 12, 2015

Happy 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. 

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.

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. 
The results all came back normal, there was nothing on the scan that indicated any inflammation or anything troubling. 
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. 
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. 

If the lip biopsy comes back negative then I don't have Sjögren's syndrome either. 

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. 

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. 

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! 

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. 

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. 
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. 
This year I have been quite the busy bee! 
Some days I long for the times I spent in my bed with netflix! It's good to recoup, but not wallow. 

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 :) 

I 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) 
I really do have a lot to be thankful for, even though sometimes I feel pretty meh. 

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. 
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.

There's always going to be some hater who doesn't love you for you. 
And you know what, that's alright. 
I have plenty of people that do love me for exactly who I am and those people hold the greatest spots inside my heart. 
And you all know exactly who you are! Love you more than you can ever know. 

On that sappy note, I will end this blog! 


Sunday, November 9, 2014

Tears of a clown

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. 

I struggle with this.
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. 

It's hard to go from being able to walk to a wheelchair/walker. To have to relearn pretty everything all over again.
And if that wasn't enough lets throw in relocating and a breakup into the mix. 

Which lets be honest should be called a break down because there is nothing uplifting about it. 

I find myself being jealous of people that can walk, drive, hell even dance (Which apparently I'm terrible at).
I get upset and wonder if I will ever be able to do those things again. 
I knows lot of people with chronic illness think it's all part of a larger plan.

I have a hard time with this theory. If that's the case your plan sucks! 
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. 
People ask me why I'm not more mad about things. 
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. 

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. 

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. 

I sit here typing this with blurred vision because I cannot stop the tears from erupting from my face.

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. 

Working on liking the new me and accepting that things are the way they  they are and I can't change that. 
It's just so hard when you never wanted there to be a new version of yourself. 
When your version 2.0 is not living up to 1.0 standards. 

I just miss being able to do so many things that everyone takes for granted on a daily basis. 

It's hard sometimes being broken. 
Especially when everyone is constantly trying to fix you and you don't even know how to fix yourself. 

Monday, November 3, 2014

all the small things

Well I never really know where to start these things.
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.

Anyhow things have been going well.
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!
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)!
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.

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 )

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.

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.

I'm just glad my steroid face is finally starting to subside!
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:
40+ pounds gained
the worse stretch marks i have ever seen
Super sensitive stomach
crazy sleep schedule

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.

Well now that Ive probably bored you to death I think that will conclude todays update.

Time check: 2:04pm Not too shabby.


Wednesday, October 8, 2014

Space, the final frontier

So this week has had its ups and downs. 
Monday I had a follow up neuro appointment that I had been waiting for what seemed like an eternity. 

He went through and did all the normal checks he would do. 
He said my strength was really good and a few of the things I did better on. 
I now had a bit of a reflex in my right elbow. He said that is the shortest nerve. 
The nerve that runs to the wrist second longest and then the leg even longer. 
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. 
We then discussed my EMG results. 
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. 
The increased protein levels point to auto immune not specially cidp. 

He then said he wanted to run some more tests because he thinks it's something called Sjögren's syndrome. 
I will be going in did a gallium scan. 
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. 

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 .
Neither sounds thrilling but I think I would choose the lip if given the chance to pick.

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. 

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.  

I kinda had a mini melt down on Tuesday and was generally in a funk. 
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. 

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. 
It was a bit of a challenge since there was stairs all around but with the help of my friends we made it work! 

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. 

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! 

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. 
Nothing quite like a weekend with your best friend! Laughter is good for the soul. 
I hope to start updating this more, but I will admit I am starting to feel like my posts are boring. 

So thanks to everyone who reads this thing :) 


Friday, September 5, 2014

September already?

Things have been going really well.
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! 

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. 

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. 

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! 

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.
I need an additional person to help me with pretty much everything, but so many people have done so without even having to ask. 

I get that I'm different now and that some people can't handle that, some people have even said "Dawn is doing terrible"
But you know what? I'm not! 

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)
Some days I do too much and pay for it for a week after, but life is for living and loving and not wallowing. 
Wallowing doesn't get you anywhere! 
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. 

There are people out there that have it so much worse than me.
There are people that never leave their house. 

I can't do that, the main thing that helps me get through each and every day is my friends and family.

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. 

Ok I sort of got off track from what I originally came here to write about. 
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. 

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. 

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.

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. 
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. 

Well I guess that's about it for now :-) 


Friday, July 11, 2014

Electricity and needles

I 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. 
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.
I'm not sure why I took the time to blow dry my hair as it crinkles up upon any contact with humidity. 
I used to be able to deal with my wavy hair but my medication curl just gets frizzy and it's so ugly! 

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. 
Anyhow once that was complete we found the specific elevators we needed and went to the 5th floor. 
Upon arrival there was another registration desk and a waiting room. 
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. 
He asked me several questions and then proceeded with the normal exam. 
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! 

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. 

Anyhow Brian came in to do part one.
He was a younger guy and very nice. 
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. 
First was my left hand and arm. 
This was the first time I remember my fingers moving while being shocked so maybe that's a good sign. 
The dreaded behind the knee ultra shock always leaves me squinting and fighting back the urge to yell.
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.
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. 

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! 
"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. 
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). 
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. 
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. 
So at this point my mind is blown. 
Either A) my meds have actually worked and my nerves are rebuilding or B) I was misdiagnosed by 3 neurologist. 

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" 
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!" 
Anyhow the test proceeded to go okay. The calf muscle with my muscle flexed was incredibly painful. 

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. 

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. 
Just taking it one day at a time and trying to keep pushing myself a little more each day. 

That's all for now! 

Tuesday, July 8, 2014

Monthly update

Well it seems I like to update this only once a month these days. 
That's alright I'm sure you all needed a break from my daily updates anyway. 

I met with my new neuro on July 1.
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.
Slowly but surely people started trickling in to the waiting room. 
Finally at 8:30 the opened the window to check people in.
People went to the window in order cept this one guy was apparently too important to wait his turn. 
Anyhow I filled out my paperwork and paid my copay and sat down and waited.

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. 
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. 
We went over the full story again from the beginning which now most of it all seems a blur. 
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. 
He said my motor functions were almost normal again, so most of my issue is sensory. 
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. 
He put in for some blood work, PT and an EMG (my favorite). 
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! 

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! 

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. 

As of this week I'm now on 15mg of prednisone every other day. 
I'm hoping that all my steroid bloat will start disappearing soon. 
I did find bio oil at target yesterday on sale. So I'm giving that a try on my fabulous prednisone stretch marks.
However it says to use twice a day for 3 months! So it's guna be awhile before I see a difference.

I started logging my food again Sunday. I am hoping I can get back on track and start losing this extra weight from drugs. 

Wow this update is kind of boring! Hopefully my next one I will have something exciting to blog about. 

That's it for now