Skip to main content

20 person blessing

Well... I am officially moved into my parents home.  It was such a blessing to have so many people come out and help.  Not only did I feel loved, but it reminded me that people still care.  Some  days get pretty lonely.  Your day is so filled with pain and tiredness that all you can do is stay in bed.  So naturally you loose contact with the world outside.  That has been a hard thing for me lately.  Slowly I have been able to witness my independence disappear from me.   Social activities are very few as it is hard to find the energy to even get to the place needed.  Naturally one misses out on things when you are absent from other events.  

However, it is not just the social activities that are becoming few.  It is my ability to do things for myself.  I have talked about the dizziness before.  The other day, I met with a specialist regarding the ear. As per usual that required more blood work.  We talked about why I would be experiencing such dizziness.  Is it the autoimmune?  Is it the medication?  Did some medication damage my inner ear?  The doctor does not know.  He wanted to take the less expensive approach by ordering some blood work and if nothing shows up to give him answers then we move toward the extremely expensive approach.  That requires some tubing going through my ear to check deep inside the ear for disruption.  In the meantime, his concern for me was my dizziness.  I am at a big risk for falling.  I had to stand up, close my eyes, stick my arms strait out, and march in place.  I could not even lift my foot off the ground very well, if at all because of the loss of balance.  I could not stand in place on my own in that position.  So there is a very good chance I will have to use a cane to help me walk because wall walking does not seem to be the answer.  We were hoping that with some time off of the terrible medication, the dizziness would be better. Tomorrow will be three weeks since I have been off of them.  The only difference that has made is that I am not so sick to my stomach and I am able to get out of bed a little more.  

My other new issue that is taking away my independence is my ability to make a fist and hold onto things.  I can only bend my fingers so far without it hurting or putting strain on them.  There is no strength.  Holding a hair dryer is becoming nearly impossible.  My fingers go stiff along with pain and swelling.  Once again, is it a reaction to the medication?  Or is it something else?  This is the second doctor who has mentioned MS to me.  Although my MRI was clean when they checked for it a month ago.  It would make sense with the dizziness added.  I seem to lean towards the right, and the left side of my face appears to be numb and swollen. It is not a big lean to the right, but if you pay attention you can definitely notice.  Who knows what is causing that.  It could be my body reacting to the dizziness.  I do have a more clear picture of things around me if I tilt my head a bit. With all the new things appearing, it is harder for me to understand that this all could actually be SAPHO SYNDROME. I seem to just have symptoms of every autoimmune disease.  Or at least that is what it feels like.   

Quite frankly I am a mystery to the doctors.  Nothing about my symptoms fit into the norm.  So while I am at the mercy of doctors to help me, I am becoming more crippled as time goes on.  I am much more comfortable at my parents home.  There is lots of space and love throughout.  That too is a blessing that I am able to return home to get better.  

With all that I am missing out on, each day I am learning to appreciate or be reminded of the things I have and what a blessing it was to have the things that I did.  So much are things taken for granted.  Perhaps all this is a lesson for me to be thankful and to know what it is like to loose control of your body.  I do not have the answer to that, but I will learn from it none the less.  So when last Saturday approached  I saw a few guys that I had asked to come help me move came,  I was thankful.  But as the time kept going, more people would show up.  After everything was unloaded at my parents and we all stood around in a group on the driveway, there were twenty people.  I was blessed.  

So despite the fact that I miss out on a lot of things, and may feel lonely at times, I know that I am loved and very blessed.  Last Saturday certainly showed that to me. It may be a little thing to most people, but to me it was everything.  It was a flicker of hope and light in my life.  


Popular posts from this blog

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 g…

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…