Skip to main content

I'm still here. Struggling, but surviving

It's been a little bit of a bumpy road the last bit.  There are days where I feel somewhat okay.  Well enough to at least go to the store or to a movie, and others (which are more frequent) where it is all I can do to just get out of bed.  The pain in my ribs gets so bad.  If that weren't enough, I've been having terrible migraines in the back of my head.  My right arm is still giving me trouble.  Most days it's so weak, I can barely hold a plate in that hand.  If I'm honest, it terrifies me. I don't know what that means.  Is the neuropathy spreading? Is something else going on? My head just spins. My doctor ended physical therapy even though I'm still using my walker.  I go swimming twice a month as my physical therapy.  It feels so nice to be in the water and not feel the pressure of pain.  But I can only handle it for about an hour and then I've completely exhausted myself. Thank you friends who have taken me swimming by the way.  It's not very grand to help me walk in the water and do some exercises, but I enjoy the company and I literally couldn't do it without your help. Each month I've been coming down slowly on my pain medication while increasing the dose of the neuropathy  medication.  My voice is gone again and though the good medication has increased, my voice hasn't come back yet.  That too worries me. Sometimes it's hard to tell if the intensified pain is because I've come down too fast on my pain medication or because it's really that bad.  I'm in the appeal stage of my SSI Disability.  They were missing a big chunk of my medical records when they first denied me.  I blame my state worker because shes who I gave all the paperwork to like I was told. With the appeal, I've got a lawyer now to help.  So I'm praying the appeal goes through. 

Some days it's so hard to keep everything held inside and to stay calm and not panic or let the PTSD work me up.  Those days I'm so frustrated with that I can't drive myself anywhere, ride in a car without crying, wake up to get ready for work, go out on the town, or take a shower without crying and having to take a rest immediately after. I get frustrated of not knowing what the future holds.  What does "better" really mean for me?  Is where I'm at now the best it will be?  If it does get better, how much?  While everyone else is living their lives, I'm home hurting, and wondering.  My psychiatrist has been working with me on not living in the future.  Because I don't know what will happen.  While that's true, some days it's hard not to go there.  She teaches me to live in the now and focus on how far I've come.  Am I better than I was back in July?  Absolutely.  Am I able to pour myself a bowl of cereal, barely make a batch of macaroni, get up and down the stairs by myself ( I crawl fast), or very strategically make my own bed? Absolutely.  All those things I couldn't do before.   But it's towards the end of January and I feel defeated in the battle or close to it anyway.  I say battle because my body is raging a complete war on myself and I know there are so many more battles to fight.  I'm feeling defeated in the sense that I still need my walker, that riding in the car is so tortuous that I never want to leave the house, and most nights I have a terrible time sleeping.  I feel stuck.  No progression and no going backwards.  Just stuck.  

I will say that I'm really grateful for Netflix.  I find that I enjoy getting lost in a fictional world.  As my friends and family will vouch, I completely get sucked in as if the book, movie, or show is my reality.  I've had several episodes of pure sobbing at something I didn't like just as the character would do.  I've slapped myself a few times to snap out of it. Still, I love getting sucked into it.  It takes me away from my reality. I don't feel my ribs attacking me, tiredness, or any of the exhausting symptoms from my illness. While some may see that as pathetic, which it is, I'll admit, it's also my outlet.  A place I go when I'm having a really bad pain day. And when that doesn't work, I envision myself at the temple doing a session.  I run through it in my mind and that brings me peace and time away from whats really going on.  I feel lucky that I'm able to do that.  For both things. 

Even though I have my bad days, it does allow me to be really grateful for the good days. Even the semi-okay days.  On those days, I have a little bit of energy to go to the store or a movie.  I don't cry as hard riding in the car.  I laugh a little more and I have hope renewed.  Those days, I live in the present and notice my progress.  I don't let fear take me and I keep moving forward.  I know that I've been blessed to know that I do have better days and that I've had better days.  I do know this. 

Thank you to those who keep me in their prayers.  Words can't properly express my gratitude to you for that.  


Popular posts from this blog

People's Ignorance

With my health being in the state it’s at I’ve come to notice the ignorance of so many people and places. 
On the days that I do venture out, I use my handicap pass for parking.  I’ve noticed the extreme limited amount of handicap parking spaces.  At the University Mall, with all its parking, there are only 4 every few rows on the south side.  Which, I’ll admit, before I really needed use of the space I never cared nor wondered if there were enough handicap parking spaces wherever I went. 
One day, I decided to “walk” around the mall for a minute.  I had just been to the movies next door.  A really sweet older man offered to help me down the few steps from the theater room.  Not knowing that you can’t touch my left side, that I had just fallen down the stairs the week before, and that stairs in general are painful.  He sort of just dragged me down them roughly.  Not helpful, but he didn’t know.  That incident had already made things tough and the pain and exhaustion was setting in.  It…

Life just sucks sometimes: A long and painful update.

It's been a while.  A lot has been going on. I was randomly chosen for a Tax Audit for the year 2014. The guy who came, said he tried to get me out of it, but you have to be terminal to avoid the IRS. The type of audit I had, was a survey audit for Congress. Some weird questions were asked.  After the visit, I was asked to get some information from my work that needed answered.  That seemed like a big chore.  Luckily, after the guy who came to audit me, got back to his office, he called me.  He said he spoke to his Manager and they decided to drop the case.  I didn't need to provide any other info and a letter would be sent stating the audit was closed and I was in the clear.  I just found it so interesting with the odds of me being selected for an audit, while being as sick as I am.  I guess  you could say that was the most interesting thing that has happened to me in a while. 

Health wise, I'm currently on Sulfasalazine to treat the actual "disease". It's no…