Saturday, June 16, 2012

Keeping My Chin Up

My appointment with my rheumatologist was this past Thursday.  I also had to have a consult with gyn while I was there, and I had some tests ordered to do that day as well.  I knew it was going to be a long day, and it really was.  I left my house around 6:30am and I didn't get home until going on 9pm.  I was completely exhausted.

Due to some of the symptoms I've been having, and the results of one of my tests, I have to go back and have an endometrial biopsy done.  I've been told that the experience isn't pleasant, at it's best.  The doctor even warned me to take pain meds about an hour before the procedure.  I'm not looking forward to it, what-so-ever.  If it needs to be though, then it needs to be done.

My appointment with rheumatology went ok.  She marked down that my condition is "deteriorating".  My pain and insomnia flares kind of told me that though.  I didn't get my huge "miracle pill" that I was hoping for. I didn't get a med change at all, except to double my dose of amitriptyline and she added a very low dose of prozac for me to take in the mornings.  She started me at 10mg, but said if I tolerate it then in 2-4 weeks to go to 20mg each morning.  She said she didn't want my body to have to adjust to too many things at once, where she'd doubled the amitriptyline.

Besides marking on a form that my health status is deteriorating, she also wrote on the form "Fibromyalgia - widespread pain, fatigue, depression, pain all over, inability to concentrate, difficulty with memory" then "depression, anxiety, a lot of stress".  Even though I knew all of this before walking into that appointment, even that my health status was worse, it still felt kind of bad to see it in writing.  I want a job so bad; I need a job so bad, and this just reinforced to me that I'm not going to be able to ever hold a regular job.  

Right before I left, Dr. Gota told me that she's helping out with a research study and asked me if I was willing to participate.  The study is being privately funded, and it's looking for a certain protein that can be found in the white blood cells of patients with fibromyalgia and chronic fatigue.  The study may provide important information on opportunities for the development of therapeutic strategies against this disease.  They'll be looking at approx. 20 patients to take place in the study.  All I needed to do was allow them to take one tube of blood from me.  Of course, I happily signed the consent form and had the blood drawn.  I told them anything I could possibly do that might help aid in either a cure or a concrete treatment plan, I was willing to do.  I constantly preach on here about advocacy and more research needing to be done.  What kind of hypocrite would I have been to say no to them? LOL  I'll admit, it excited me and gave me a ray of hope, knowing that a new study is being conducted!  We need MORE studies and clinical trials in this field.

I'm sad knowing that my health is deteriorating.  I'm discouraged about money and how to pay my bills.  I'm worried about the endometrial biopsy and what it might show.  Through all of this, I've decided to keep my chin up and do my best to have a positive attitude.  IF my biopsy comes back bad, at least they'll have caught it.  The Cleveland Clinic is also the number 1 rated place for cancer treatment in Ohio.  Those are both positives.  I may be short around $160 (more if I have to buy any more groceries between not & then) for next months bills, but at least I have enough money to cover THIS month's bills and the hope of making enough money to cover July's bills too.  -I have my older camera, a Canon EOS Digital Rebel 300D for sale on craigslist right now.  My body may not allow me to get a "traditional" job, but I can keep the faith about getting a seminar on chronic pain and/or invisible illness going.  I may have a break, a church may donate space to me for me to hold a seminar there.  I'll find out in a week or two for sure.  Then, I'll just have to come up with a cheap way to advertise the seminar.  My health sucks, to just put it out there, but no matter how bad my health is, someone else out there has it worse.  

Education, advocacy, and awareness.  I'll never stop preaching about those three words.  Those three little words are not only my ticket to a career, but also to finding a cure for this nasty illness.  The ticket to developing a concrete treatment plan that will work.  Then, none of us will have to feel this way anymore.  A positive attitude may be the difference between succeeding or failing.  I choose to succeed.  If you know of a company, business, or organization that may be interested in helping me to succeed then please pass along this blog or the link to my "Go Fund Me" page.  If I could raise enough donations to rent space and to advertise, for 2-3 seminars, then I think I'd be set.  I'm keeping my chin up.  When the time is right in God's plan, this will all come together for me.  Of that, I'm confidant. 

1 comment:

  1. You better keep your chin up!! :) I am glad that they are changing your meds and I hope that they work for you. It is terrible living in pain all the time and knowing that is is getting worse is just depressing in itself. I seriously don't know how you do it. Truly you inspire me, that is why you have to keep your chin up! All of us out here that are in earlier stages of Fibro look up to you for strength. And strength is something that you definitely have. I hope that you apply for SSI and get that approved. I will be the first on to say that there are 1000's of people out there that don't deserve to receive those benefits but I have to say that I feel that you are one of those people that does deserve to receive those benefits. <3