Counting sheep....100, 99, 98

Apparently 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! 

I caught up on most my weekly shows besides scandal because that seemed far too serious for the mood I was in.

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. 

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. 

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.  

Have you ever had like gas get stuck in your chest and it feels really painful? 

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!

Anyhow after a few moments of panic and a large burp I started feeling normal again, although now partially grumpy. 

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.

Andrew got home around 3:30 and fixed the lighting situation and then promptly passed out. 

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. 

Medical alert: caffeine allergy! 

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. 

So I guess I will write about PT even though I feel like I've already posted it everywhere imaginable. 

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. 

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. 

I beat my times on the treadmill which was my goal and walked further than I had previously in the hall. 

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. 

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, 

Medical alert: allergy to the sun! 

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

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!

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. 

So back to the waiting room. 

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.

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. 

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.

She mentions the stretch marks and makes a type of frown face. Yea I told you they were bad lady! 

So I onto the fun part. 

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!

So finally I am close enough then she has me position my feet in the stirups or whatever they are called. 

So between the numbness and my legs being so tired they don't want to stay up. 

She calls in an assistant to hold my legs for me. HOW EMBARASSING! 

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?! 

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. 

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. 

We finally leave Kaiser after 5pm and head home! 

At this point the soreness has really set in yet I decided to watch some tv downstairs for a few hours. 

Which makes going up the stairs later extremely difficult.

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! 

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. 

Xo

Thoughtful Thursday

Could it possibly be that I've run out of things to say? 

I mean I feel like each day I start writing a blog post but never finish it.

I guess maybe because I find myself boring and my day to day routine to be kind of a drag. 

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. 

I'm hoping in real life the scenario will be as serene as it is in my head.

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. 

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.

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. 

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. 

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.

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 

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.

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. 

My ability to walk 

My ability to use my hands for things like typing/writing (which I'm working on getting back)

My ability to drive 

My independence 

My job

Some of my friends 

And now my relationship, Cali life and my fur babies. 

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. 

Everyone has told me the first few years is the hardest and I can see why. 

It really puts a strain on relationships and you always feel like a burden. 

I feel like it's important that everyone knows I'm trying. 

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! 

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! 

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: 

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. 

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. 

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

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! 

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! 

So I'm not quite sure why I have such difficulty with embracing the things that are different about me now. 

My cheetah looking stomach, my zombie walk and even my wheelchair. 

I feel embarrassed sometimes when I make a misstep or if someone sees me fall and I know I shouldn't but I do. 

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. 

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. 

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. 

I'm hoping to find a doctor that I like as well as physical therapy and keep on trucking along.

I'm so grateful for all the wonderful people in my life that have made this journey just a bit easier. 

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. 

Just hoping this next chapter in my life is a little easier on me. This past year has been a bit rough.