...still thinking???

I dropped the blog last year. As some may have noticed.

Nutrisystem, I never got notification of your question about the program. While I enjoyed it, lost 10 lbs, I wanted to be able to also cook my own foods... So I didn't last very long. The frozen foods were fabulous with the exception of maybe one or two foods. I admit I was scared of the dehydrated hamburger, tried it anyway, and it was delicious.

So a little update over the past year. . . I know in my past blogs I've mentioned the mystery pains, etc. That has been quite the struggle to deal with, for me, and my family.

Despite the pains, I tried to deal with it the best way I could. Some days, I'd ignore it, some days I'd take an ibuprofen hoping it might help, other days I'd lay on the couch or floor. I also decided to start painting again. Not just like do a little pretty flower, but really get into my work. That was therapeutic in some ways.

I had been officially diagnosed with Fibromyalgia, yet it didn't seem to explain everything, and once I was diagnosed with FMS, that was that. No direction or help from my family doctor. She had a hard time believing I had FMS, but yet wasn't trying to help me find other diagnosis.

My youngest had started preschool, so I was a little excited to have time to work more on my art, be more active, etc. Unfortunately, I would spend one day to a few days chasing those dreams, then several days on my couch. This wasn't right. I started writing and emailing different specialists, even the Doctors TV show, Dr. Oz, etc. No response. As the year came to an end, I decided I had to just learn to accept that this was going to be my life, and I had to embrace the isolation that was becoming part of my life. As I did this, I refused to let it all bring me down. My new resolution was to embrace solitude and to smile every day. It's amazing how a simple smile can help us, whether it's us wearing it, or seeing someone else smile.  Some random Facebook post from a TV show asked what our resolutions were. So I stated the Smile Every Day resolution. A few months ago, the Revolution TV Show seen that resolution, asked me how this has changed me life, asked if I wanted to be part of the show, etc, etc. Of course, what a cool opportunity, and with that I thought maybe this was my chance to cause awareness to those of us being affected from Chronic injuries, syndromes, etc...  Well sad to say, they didn't see this as too marketable, after getting my hopes up.

Needless to say, I'm not going to be on the tv show. That's too bad. But maybe someone out there will get a voice for the rest of us.

*****

Since the new year, my pains have been getting dramatically worse. But again, since the specialist and family doctor didn't offer anything but anti depressants (and I'm not depressed, I even had an evaluation done to make sure I'm not) I was just sort of on my own. Google became my best friend trying to find answers.

Then I got really randomly sick. It hurt to do anything. I repeatedly went to my doctor, who didn't run tests, just kept on saying take Aleve. One day I found myself feeling worse while shopping, and then blacked out. It was frightening. I knew at that point, something was wrong, it wasn't in my head.

Went through all the madness and trouble again with doctors, etc. Finally I made an appointment with hospital administrators. I had it with these doctors treating symptoms and not finding out WHY all this is happening to me.

The admin helped me find a new Primary. Who is wonderful. She doesn't treat me like a hypochondriac, and made the effort to find me more specialists. Unfortunately, I had several doctors say that I need to get down to Mayo Clinic, they put in referrals, did more hoop jumping... and nothing was happening.

I started trying to advocate more for myself. Then Mayo shut me down. They said I expired all avenues, and because I had Fibromyalgia, they won't see me. Another door shut on me. I admit it was/is frustrating. Here I am wanting to better myself, but I don't know how. And no one really wanted to help me. So again, I spent more and more time on Google. I hated the idea of self diagnosis... but what do I do if no one else is willing to?

In April I was calling all over the place, as was my new Primary... Trying to get in to find specialists. I had a hard time believing that I have to live in the pain I'm in. It's not living. Most Rheumatologists were not taking new patients or they weren't having availability until October or November. I found that ridiculous and hard to believe. Then my primary calls to say that they found someone in Bemidji... in July. Sad yet fantastic. It's better than November!

Well the appointment finally came. I couldn't believe how many different things are wrong. I'm one defective person! However, I finally have answers and diagnoses that make better sense of all the various symptoms. I understand why it hurts to stand, why it hurts to exercise, even if it's yoga, I understand now why I have random bruising and bleeding, etc. I understand why it was so difficult to sit in a car, and why it hurts to hold a steering wheel. Why I'm needing 15 minute breaks or longer after 5 minutes of activity. It's all coming together, and that's a little more helpful dealing with it all.

From there, MORE specialists, back to Physical Therapy. (After the pain/flares this winter, I stopped all activity- so I'm in worse shape than I should be)

I'm a lot more hopeful now than where I was a year ago though. While I can't change the diagnoses, I can do some things to prevent, some things to improve, and well, just have a better acceptance of what I can and cannot be.

Then going back to another blog... I know I can't make people be friends with me. I get that it's difficult to want to be around someone that's limited in a variety of ways, in constant pain, etc. It is frustrating that people don't understand or don't want to understand, but it's not their cross to bear, it's not their burden. I get all that. Especially when people might look at me and think I look fine, but doesn't mean I feel it, I'm sure that's all confusing to them. I'm aware people think I'm a hypochondriac or over exaggerating my pains. And think that in itself had a lot of doctors not trying to hard to advocate for me.

Either way, finally taking steps forward, not backward, and a smile on my face as it happens. And maybe soon I won't be seeking anymore. :)