Illness and the Little Things

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...

6 years ago this was me. Married Oct. 1. Back then my health wasn't prefect but it was manageable. Each year I reflect around this time & where life has taken me. I've often been asked if my health got better or worse during marriage or after the divorce.  Truth is, it stayed the same until after the divorce. Then 3 years later it seemed like I was going into remission.  I hadn't had a flare in months! I went almost a year without one.  Then things changed. 4 out of the 6 years out of the 11 total (of being sick) is when I lived the most.  I experienced my 3rd love, marriage, divorce, redefining how I wanted to be treated as a person, ran a half marathon,  connected with my mentor, changed my schooling path, participated in a documentary, had my thesis published,  & met the most incredible people of my life.  If I didn't divorce, 99% of those wonderful things wouldn't have happened.  I've grown so much these past 6 years. Never did I ima...

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 ...

Moving into my new place on campus.  SUU Over the past few weeks, I have spent my nights of no sleep watching an old TV show called "GREEK".  It's a show about sororities and fraternities in College.  Not all that great, but it got me thinking.  It even made me cry.  It was all because I was remembering my life before I got to this moment.  I miss it. And I miss the people who have moved on.   After High School, I went Southern Utah University.  It was amazing there.  I lived in a crappy, extremely old building on campus called Manzanita.  I lived with 4 other girls with 1 bathroom, no dishwasher, the whole building shared a small TV, and my first ever coin operated laundry experience.  I met the most wonderful people there.  It really was a glorious experience.  I dated a lot. It would annoy some of my roommates because I had a boyfriend at the time who was serving a mission. His name was Cameron and even thoug...

People mean well with the words they say or the actions they do when dealing with someone who has a chronic illness and pain.  I don’t believe anyone intentionally means the following remarks to be hurtful or annoying, or just ignorant.  However, to really try and understand how chronic pain works on a day to day basis then continue reading.  It’s to give people a better understanding of what is helpful and what is not.  Don’t be offended if you’ve done some of these things either.  Don’t be offended by my sarcastic remarks either.  I just want you to be aware. I’ve studied around on lists other people have made about chronic pain and what is helpful and what isn’t.  It wasn’t surprising when I found that my list was the same or very similar as others who deal with chronic pain.  -           You don’t look sick- Just because I don’t look sick doesn’t mean that I’m not.  Some days there is a litt...

What a month it has been.  So many miracles have taken place.  There is no other way to describe how certain things fell into place except by saying it was a miracle. On November 16, my surgeon agreed to cut out a portion of my rib that day.  Previous to that date the CT scan I had done came back as normal. He however, took a second look and found something.  He brought in Radiology to confirm and they did.  It was supposed to be a simple Outpatient procedure.  The surgery part went great, the recovery did not.  I was prepared for even worse and a different type of pain but to the extreme at which I felt.  So after a few hours of agony, they decided to keep me at the hospital for a few days until I could get on top of the pain.  It was absolutely miserable.  I had a pain pump hooked for 3 days, but by day 2 I could already tell the difference that removing part of the rib was working.  The surgeon came in and told me everything lo...

Well now that the people who needed to know personally from me know the big miracle unfolding, I can tell the rest of the world.  This coming Monday morning I will be having an outpatient surgery on my left rib.  The 7th rib to be exact.  Here I will try to answer any questions that people might ask about it.  I am still in shock but feel very humbled by how everything went down. As we all know, last Wednesday I posted my pity post of frustration.  Nothing was going right at that point.  I just needed a day or two to vent, be sad, frustrated, and what not.  That evening I had gotten the CT Scan done.  I was told that the surgeon would call me with the results the next day. Let me remind you that I was fully prepared for the following:  The scan would not show anything, the next step would be to kill the nerve around the rib, that experiment would fail, and I would be left with nothing.  Even during the meeting with the surgeon, he said...

GJFKLSJOFKOVNKFMGIOBJFVNDFWOQPDPLDKVJKN VKJVNDKJVNSKDLCMDLXKCM! That is how I am feeling right now.  It is how I have been feeling since my last post.  Today just happened to be the breaking point for me.  It has been feeling like all my efforts to get proper paperwork, doctors appointments, etc. have failed.  Today I felt like any hope I had to keep fighting was lost. Why try anymore?  Is this really how I am going to be the rest of my life?  If so, then why I am I fighting so hard to get results that will never come? I had been filing for Medicaid with the state since I am not working.  That itself is a very long and annoying process.  Instead of just sending everything at once, the state sends little parts of paperwork along the way.  By the time my doctor got the most important piece of documents, there was little time to get it sent back in to the state.  After it was sent in, the next day I received notice that it was turned in...

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 ...

Illness and the Little Things: Going back home :  As I look back at my life and think of what my plans were at age 19 the plan I am about to make never crossed my mind.  After months of deb...

 As I look back at my life and think of what my plans were at age 19 the plan I am about to make never crossed my mind.  After months of debating it has been decided that I will be moving back home with my parents by the end of this month.  At 19 it did not occur to me that I would be so sick to the degree of the incapability of working, providing for myself, and having to move back home at age 29.  It is not an ideal situation.  Nothing about my life the past 10 months has been ideal.  Slowly I have been stripped of my independence. Ideally, I would not be sick, or if I still had to be I would at least be well enough to work and finish school and stay at my apartment on the third floor. Every day I tell myself "it could be worse" or that "one day I'll be well again".  I believe in those words.  It is what provides me hope.  However, hope does not change reality.  The reality is, I can no longer provide for myself.  I have extreme...