Wednesday, October 16, 2013

Dear Reader

Please forgive my absence.  It isn't that I didn't have anything to say. I think it's because I've had too much to say. Every once in awhile, it's all just too much and you need to take however long you need, in order to move forward.

I guess I should update you first. I went to the neurosurgeon to evaluate the tumor. He was able to discern the tumor on the MRI from a year and 1/2 ago. He was able to measure it and it is the same size as now. After reviewing my symptoms and my films, he made it perfectly clear that the tumor is in absolutely no way the cause of my fibromyalgia. Based upon the previous MRI Versus the current CT scan, the course of treatment is to watch it. If it grows, it would be a cause to remove it but at this time it is not recommended.

I had a tough time after that visit.  This is what I wrote a little over a week ago on my patientslikeme account.
"Since then, I have had to completely readjust.  As this disease has taken my life away in a slow steady pace, I had time to process each loss along the way slowly rather than the position I am in now.  I had hope for the first time.   That hope has been completely removed.  It's clear to myself and my doctors that I am disabled.  So much so that I truly am never expected to return to work.  I've lost my worth a little bit.  Not that I'm truly worth less.....but it feels that way lately.   And yes I purposely separated worth and less...because I'm not worthless....I feel worth     less.    And it's been hard to handle this time.  I'm trying to get back to good but it's going to take a little while.

I've also recognized recently that my doctor was correct when he had reported to me that a majority of fibro patients report a lessening of their condition in the summer.   Fact is I had  less "very bad" days during the summer.  Also, recently I have felt a significant worsening of the symptoms in the last week or so as the weather has been changing.  It's beautiful but I'm quickly going back to being unable to move prior to noon regardless of what time I went to sleep.  I'm sleeping about 12 hours a day the last 2 days. Getting up in the morning has also been excruciating."

All that being said, I actively made a choice to pull myself out of the slump.  I'm not saying that I am 100% fine because then I would be completely bullshitting both of us.  Truth be told though, I'm doing a bit better than I was when I wrote that entry. I took the dog for a walk last week.  10 mins and I needed to rest but at least I did it.  Then on Thursday, I was able to get up early enough to make it to my water aerobics class that I  haven't been to since the spring.  Granted, I ended up being knocked on my @ss for the rest of the day but that's how these things go.  I've had some bad days lately but I've also had moments with my family that I can hold close and keeps me going.  One step at a time is the only way to that's how I'm trying to take it.

If I haven't explained what "patientslikeme" is , here goes.   An extremely helpful website that allows you to track your disease(s), your symptoms, your mood, your treatment so that you and hopefully your doctor can look and compare to see what is working for you and what isn't.  It also acts as a support group because you can interact with other people who share the same disease as you.  Additionally, you can look to see what's working for other people and look into clinical trials in your area.  I can't speak highly enough of this site.  It gives you what you put into it results wise.  Additionally, I bring a printout when I go to see my doctor that let's the doctor see how I have been doing since seeing him last.  He loves it!