Catch 22

So As much as I hate my 30 stairs I think my legs were actually think they were making my legs stronger.

I say this because while in Michigan I was having quite a few issues with my knees feeling weak to the point of almost falling and having to catch myself. Well I've been home a few days now and have done the stairs a few times and I am so incredibly sore you would think I literally ran a marthathon! 

So while I loathe the stairs I guess I'm a sense they are good for me, but they really do complicate things. I think my live would be so much easier to deal with if I could say wheel my chair up to the door and open it if I wanted to have company. I can't currently do that. 

So Let's see I left Michigan on Thursday in the beginning stages of their snow storm! 

Took over an hour to get to the airport, because of the amount of luggage plus my chair and walker Andrew and I could not travel to the airport together as well there was no room for him or his stuff I'm my parents car. So we agreed to leave the house at the same time in hopes we would arrive at the airport the same time. This is not in fact what happened at all. 

I left at 2pm, him around 2:15 but between all the accidents etc I think we arrived to the airport 40 mins apart. My parents helped me with my bags outside and checked them and wheeled me in to the wheelchair assistance booth for delta. 

By the way walkers and wheelchairs in slush is just gross. 

Anyhow the guy took my boarding pass and we were on our way through security. There was no none in line which was shocking for Jan 2 of course the guy was expecting me to go through the typical security scan even though he just took my walker and I'm in a chair. Hmm 

So I get the old rub down from a totally hilarious woman then the full swab of my chair etc. He then noticed that they had me down for a wheelchair and not the aisle chair/transfer chair. So he called it in to make sure it would be ready for me. I had made sure not to eat or drink anything after 1:30 that day since my flight was leaving at 5:30 and I had just been dealing with a harsh stomach flu. 

Plus once I'm on the plane there's no way for me to use the bathroom. I currently cannot walk without my walker and that doesn't fit in the aisle so I'm not sure how people do this? I would love to know tho because I would probably not freak out as much about flying if I did.

A nice lady sits down next to me while I'm waiting for andrew and asks if there is anything she can do for me, I thought this was incredibly sweet of her! 

Anyhow so right before boarding this guy comes over and tells me we will board first asks the easiest way to get me into the transfer chair etc and says he will see me in a few minutes. I then beg Andy to take me to the bathroom again just I'm case because like I said 5 hours without the bathroom definitely scary. 

So we get back they start boarding the plane and it's a different guy that wheels me down. Andrew takes my bag and stuff and loads it onto the plane meanwhile guy thinks I am going to walk onto the plane. I'm like "umm I need the aisle chair" like does he think it's just sitting there for the world to gaze upon it's beauty? So I tell him I can stand up with my walker and they can help me into the chair. Mind you the size of the seat on this is like a skateboard cut in half and my ass is not exactly small. So last time I did this I believe I went into the seat from the side but this guy wants me to back straight up into it which there is a footrest thing that makes that difficult. So he says he will help me. So he grabs my arm and says I'm in. Although neither him or his helper were paying much attention because I started to slip off and I know I said loudly I was falling but yet I still hit the ground pretty hard and hit my side into the footrest on my actual wheelchair. 

Luckily the guy doing the side load luggage was able to help them lift me back up because I don't think they would have been able to do it. At this point I am fighting back tears because I'm both in pain and beyond embarrassed. 

The women from the counter came and asked if I was alright and let me know she had filed a complaint. Which they called me but I was at the doctor so have to wait for a call back, hopefully tomorrow. Small bruise but very angry leg!

So after an incredibly long day we arrive in San Francisco about 20 mins early, all luggage arrives which is awesome. There is no family bathroom which annoys me because my legs are shakey and I don't want to use the restroom alone. Between luggage and everything else Andrew has to find someone to push me. She offers to take me to the rest room which was nice of her but I was still alone and paranoid I was guna fall on my face.

So we landed at 7:45 I think once all out stuff was loaded into the truck it was about 9:30. Drove the 45 minutes home unloaded all the stuff get into the house trek the 30 stairs while I feel like I'm dying because I'm sick and just want to sleep because I'm still on Michigan time and it's now close to 11pm which is 2am there. 

Why I made my neurologist appt for the next day at 9am is beyond me but I totally did and was beyond annoyed at 7:30 when my alarm went off as I did not get enough sleep. 

Appointment went well, I brought in all my questions this time and was prepared to ask them all. 

We went over the usual strength tests and everything was pretty steady from where we were in Sept. I mean that's good news that I didn't get any worse. 

Dr. Cho told me she was very impressed with how I have been handling this whole situation and that I have such a great support system and she attributes a lot of my positive energy about this to them. It's true I have some really great people in my life that definitely keep me focused and keep me going.

So basically the appt notes are as follows: 

If I didn't have so much sensory loss with the amount of strength I do have I would be doing a lot better. The problem is I can't tell where my feet are so therefore it's taking a lot of extra effort to make things work correctly. She told me the story again about the other gentleman who also had this much sensory loss. She has only come across the 2 of us in the 35 years of dealing with Cidp. Anyhow that man she had given up all hope that he would ever walk again (he was far worse off than I am) and he had actually stopped treatment and like a year and half later his body just started to come around. 

She said she is still hopeful and optimistic for a full recovery but she is unsure that will happen. She said it is possible I will still have a disability, but maybe others won't be able to pick up on it right away like maybe I walk a little funny or something. I can live with that. Hell I can live with assited walking as long as it walking! 

I spoke with her about my horrible stretch marks which she confirmed were from the prednisone and we also spoke about the swelling as well. And asked if I could be put on a water pill to help with all the bloating. Which seems to have gotten incredibly worse over the last few weeks. 

I asked if it was normal when you dont feel well to feel more tingly and weaker and she confirmed it was totally normal. 

I also asked what forms if any I had to provide to her to give to SS disability since I have that application going but don't have my "medical evidence". She said they usually just request a copy of my record. Which it seems I cannot request a copy online so it looks like I will have to do so in person.

I wanted to know if I should start seeing some greater results from the Imuran since it has now been 6 months. She told me that I indeed should and if at my next appt we don't see some greater improvements we can start discussing other options, but at this time since I have been waiting for this to kick in it doesn't make sense to change it up now. 

I did bring up the weird hook worm parasite treatment and she gave me a kinda funny look and said she would not recommend that lol

We talked a bit about nutrition and she basically said low calorie, low fat and avoid sugar. Which I have been living off all of the above for the last 6 months so guess it's time to get my ass in gear!

Also we are back to weening off steroids so hoping between that and the pill to get rid of the steroid swelling my face should be returning to normal size soon 

I thought the appt went well and then I was on to see my other doctor in regards to my cold. Was comfirmed I had a sinus and ear infection. Was given antibiotics to  kick that and sent on my way. 

Came home and drug my ass back up the 30 stairs where I stayed for most of the weekend since I felt like hot death on a stick and I was still experiencing some stomach issues from my stomach bug. 

I had a total melt down tears and all And who wants to leave this face ? 

Saturday night because I was just feeling so overwhelmed . Between my cold and cough, stomach issues, sinuses and ear infection plus my Cidp stuff I just had enough. And to top it all off after being away from my bf for 10 weeks I can't even cuddle with him because he's sick as well and I'm immuno comprised as my doctor likes to say. 

So that pretty much brings us to today. 

I still wasn't feeling great so Andrew went to the grocery store for me. Which I don't like because I'm kind of a control freak and like to be able to do stuff myself, but currently cannot :/ 

Finally scraped myself out of bed long enough to take a shower in hopes that I would feel better in any small way! Didn't work though. 

At about 8pm I went downstairs for a bit was going to prep the chicken but couldn't since there was a few spices missing so maybe tomorrow. Was just hanging out with andrew for a bit but got uncomfortable pretty quickly. 

He brought my chair in for me in case I want to try and get around the kitchen tomorrow while he's at work and my cats think it's a new play toy 

So after a bit I decided to work my way back up the stairs which my legs are still screaming from! 

I'm feeling a bit nervous about being home alone all day tomorrow. I mean I was at my parents house but they usually get home around 3:30 and Andrew doesn't get home til closer to 7 at the earliest. I think I will ask him to make sure the weird latch is undone just In case if something happens I can call my friend who has a key. I guess that's just me being a worry wart as usual. 

But I think that pretty much sums up the last few days. 

Still feeling crappy, legs still hate me and of course because my body loves me so much I have a serious case of pms that makes me want to punch myself! So here's hoping tomorrow won't lead to anymore melt downs.