I enjoyed myself even though I felt like I wore myself out these past few weeks with all my plans with friends and family.
I'm only in town for another 5 days and I'm feeling quite bittersweet about it.
On the one hand I am so ready to be home in the 60 degree weather and see my babies and sleep in my bed and just get back on track with everything but I'm really going to miss my friends and family here in Michigan that have really been keeping me going and getting my mind off things. I wasn't sure about a 10 week hiatus but it was good to see my family and friends and have my parents take care of me. I'm nervous about going back home and doing this all on my own but I guess I have to make that leap at some point.
Things have been going ok, but let's be honest we all have our days.
Some days I just want to feel sorry for myself for a minute or wish that someone could truly understand what it is I am going through but the fact is that no one really can know because no one is in my body dealing with this stuff daily. Even others with Cidp all have a variety of symptoms so yeah everyone is completely different. When someone suggests doing something "real quick" or "stopping by" "running in" I want to have a straight up melt down! I want to scream at the top of my lungs how hard it is for me to go up 1 stair, how strained my body is after getting into the house, how I just want to curl up and sleep upon making it to the couch, but I don't.
I never feel like anyone would understand that. Never in a million years would I have thought just going to the bathroom would wear me out. The act of standing to pull up my pants sometimes forces me to break a sweat. And while I would love to complain all day about it I don't because I feel like people would think I am a huge baby. So instead I keep trying to push myself and keep my oh woe is me buried down deep for awhile. I just feel like sometimes people think I'm faking how hard things are for me. I would love to see some people spend 1 day in my shoes and then let me know what it's like. Try one night having to put shoes on to go to the restroom. Oh and don't forget your night light! Can't walk without being able to see your feet. It's possible but usually ends in a twisted ankle or worse a tumble all because you couldn't see where you were stepping.
There are some days I don't even want to think about having Cidp.
I don't want to talk about treatments or physical therapy.
I feel like people see me in a wheel chair and want to have a full on heart to heart about what's going on with me. They want like my full medical history. Dude you want to just log into my account and see all my test results!?
I get that I look different than you remember but I assure you I have plenty to talk about that isn't related to auto immune or my "sickness".
Maybe that makes me a dick but damn do I get sick of thinking about what I am dealing with and will probably be dealing with for a very long time. Some days
I don't want to even think I have anything wrong with me but that is all a pipe dream since I have to stare at a damn walker majority of my day.
So all that aside let's be honest about my life lately.
First and foremost when you have something wrong with you everyone is a doctor. I have had random strangers diagnose me, tell me what I need to change in my life and pretty much tell me how to cure my made up disease. One guy actually told me since it was abbreviated to CIDP it pretty much meant the doctors didn't know what the hell is wrong with me. Ok well when you have your PHD then let's talk random weird guy.
I'm sorry the 800 blood tests, spinal tap, EMG and my neuro with 30 years experience proves nothing compared to random people and their web MD.
Do these people think I have not done research and looked stuff up online myself? I mean there are days I spend hours online reading others stories and their treatments. I spend days just solely reading reviews people had from treatments. I ask questions in support groups and try and find people that can some what relate. I just get tired of every asshat in America wanting to "fix" me.
Trust me I want to get better as soon as possible but I am trying to remain positive with my treatments and give the appropriate amount of time to let the treatment work!
I wake up almost daily and not know if my legs are going to be having a good day or bad day.
Good day consists of being able to semi walk like a normal person and bad day is when my knees like to try and give out and I have to really strain to get from point A to point B.
Thankfully lately there have been more good days then bad.
Some days I wake up and my ankles are beyond swollen. They look like I've been standing all day yet it's the opposite. It really worries me sometimes but there isn't anything I can do about it so I need to knock it off.
My stomach also has good days and bad days. If I eat something my stomach doesn't like I pay for it all day long. It seems lately I have been having more bad days stomach wise than good. I think partially it's my nerves starting to kick in about traveling and being home alone etc. I'm just hoping that I can make it home without incident. I don't know if any of you have ever had to travel with legs that don't work but it can be quite stressful. Especially that tiny transfer chair they have to use to get me in my seat. That had anxiety written all one it.
My immune system is barely there anymore. I say this because I am on a drug that is killing my immune system.
And well I have caught every damn germ imaginable since I have been home.
I don't think people really understand when I tell them I can't be around sick people. I say this cuz they show up sick heh. I feel like every day I wake up with a new symptom try and kill it off with over the counter meds and keep on trucking along.
There are some days that I just don't feel like I can function though. I wish that teleportation had been invented. I wish that I had infinite amounts of money, hell I even wish sometimes people would just stop and be quiet for a minute before lecturing me, but sadly these wishes are just that.
Some days I wake after having a crazy dream and in said dream my legs work.
I get awfully depressed on these days and try and find something positive. That's all I can do is try and make a positive from this negative experience.
Basically I would love to just be able to hang out with people without having to know how many stairs are involved on getting inside or if my walker will fit through your bathroom door. I just want to do normal things with my friends but at this time I can't. I know "normal" isn't the word I'm looking for since someone will say I just need to adjust my view of normal. Which I do agree is true but damn does this fucking suck some major ass sometimes.
I know you are all thinking I am a massive Debbie downer now that you have read this post but everything can't be sunshine and rainbows.
And now just to prove that I am not a total negative nancy and that I do have something positive to say, this disease has really truly taught me who my true friends are.
I've been in Michigan 10 weeks and there are certain people that have made an effort to see me each week. Take me out, lift my heavy chair, cram it in their cars, help push me around and even help me to the restroom. These people never treat me like a burden (although sometimes I feel like one anyway) and never complain. Hell they even offer to do it all again after it's done! You all know who you are and to you I say thank you! I couldn't have made it through what I've been going through without you. Every little lunch date or stopping by to see me always lifts my spirits regardless of how I have been feeling. I honestly will miss each and every one of you when I'm back in California. I hope that one day I can repay you all for all your kindness.
That being said I think it's time to shut off my brain and try and sleep.
Hopefully I will feel better in the morning so I can continue with my plans and kick this stupid cold in the ass.
Xo
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