RA and me

I have been absent for a while.  I know it but I have really been struggling with this one.  Mostly because I am sharing once again with the world.  I have shared a lot of what FFOH does, a lot of what I do.  Just a lot of my life.  Some of you that follow this blog know that I have had migraine's for years.  I finally after 20 years go them under control.  I was relatively pain free for 6 1/2 months. 

I was in Humbolt for the last of my CAIB courses.  I sat on the bed in a hotel room with my knees up studying for 8 days. On Thursday my hip was stiff and kind of sore, but not that it would slow you down.   I wrote my test on Saturday morning and got home just in time for the auction.  I was dressed in my '80's garb and high heeled boots.  I lasted until about 10 in my heels and my feet hurt so I swapped for my flats.  After the auction I stood bent over a table for about an hour and a half.  And then we went to the bar and stood for another hour.  By the time I got home, my hip ached.  Really hurt.  We cleaned up the next day and I was limping.  Chalked it up to sitting in the room reading for  and then being bent over for so long. 

And then it continued to hurt.  It hurt for 4 weeks so I made a doctors appointment.  They sent me for X-Rays and blood tests.  Then they called me to come back.  That is never a good feeling.  It was a long week to wait. 

Then they told me I have Rheumatoid Arthritis (RA).  I have marked degeneration in my right hip.  Since then it has also affected both hips, my knees and ankles. 
And a diagnosis changed my life. 

I have worked with women with cancer for 11 years.  I have never had it.  I'm not a survivor. I never really understood the emotional side of a diagnoses.   I don't do well with the emotional side of anything actually.  But I finally understand.  Well a bit anyways.  RA isn't life threatening.  So it still isn't exactly the same.  But it is life changing.  

I have always worked hard.  I try to always be the first one in and the last one out on anything I do.  Being told that you have to slow down was not something I could get my head around.  I have been incredibly tired lately but wrote it off as a side effect of the migraine pills.  But now I had a reason. 

They have prescribed me increasing doses of pain killers.  Anti inflammatory drugs designed to reduce the inflammation in my joints which can also cause stomach ulcers but right now that is the least of my worries.  They initially told me that the wait to see a rheumatologist was 5-6 months. 
However, the physiotherapist and my doctor built a case for me and got me an appointment next week.  For that I am grateful.

RA is an auto immune systematic disease.  It is not "my knees get a little stiff in the morning" kind of arthritis.  This is how it works.  My body has decided that my joints need protection from an imaginary threat.  My body is trying to immobilize my joints in order to stabilize them.  Then it sends inflammatory cells to my joints.  The more I do, the more my body send these cells.  These cells if you are hurt help heal you.  When you are not hurt, they act like acid on your bones.  My body is fighting itself.  In order to try to minimize the swelling in my joints, I am to do pretty much as little as possible because I am in what they call a flare up.  A three month long no end in sight flare up. 

I sit on a lot of ice in the evenings.  I am pretty good in the morning but at night it's not good.  I have found that I need a ton of sleep.  And if I nap in the afternoon, I can work a bit later.  And it hurts, all the time.  Even with the pain killers, it still hurts.  Sometimes I can barely walk.  Sometimes not to bad but there is no rhyme or reason to it. 

After the doctor told me what it was, I will admit, I was terrified.  Your mobility is something that we all take for granted.  Like any bit of our good health I suppose.  It took me a couple of weeks to get my head around it.  I shed some tears, freaked out a little and then came back to reality. 

I am grateful for it where it is.  It is not in my hands.  I can still write. I can still work although I am slower but I am still able to work.  And I have decided that it just hurts.  I am still going to be able to do all of the things I want to, just maybe in a scooter. 

I am not asking for sympathy.  no one needs to send notes of encouragement.  I don't write to make people to feel sorry for me.  I am just letting everyone know at once.  It is easier this way. 

I am writing to remind everyone that we are one diagnoses away from a huge change in your life, your beliefs, and your priorities. 

One diagnosis.

More weight gain

Hello all. 
I have been neglecting my blog lately.  I have been writing a lot for Forever Friends and have simply run out of time in my days.

I maintained my steady weight gain.  It may be a combination of boredom, being alone, and stress.  I don't know.  But I have gained about 20 pounds since August.  I have been exercising regularly and trying to watch what I eat but can still talk myself into anything.  Sure you can have that, you worked out.  I have only had one headache this month though.  It lasted 2 days so not too bad. 

It's still worth it I think. 

I would rather be healthy.  Not being in pain all the time is very worth it. 

Now to get through the Christmas Season. 

Merry Christmas all!

Migraines and Weight Gain

I have some bad news for migraine sufferers everywhere. It would seem that the pills the neurologist gave me have made me fat. For a while after I got my dosage close to right I could not eat enough. I ate all the time because I was starving all the time. I noticed the scale going up but didn't put it all together.

One day I had my ahhha moment and read the side effects of my pills. Increased appetite and weight gain. Great. So the side effect of headaches is fat ass. (and head aches. Get that. One of the side effects of migraine pills is headaches) But I digress.

So I have gained 10 pounds since August when I had my last appointment. However now I know better therefore I will do better. (Mia Angelou) I know I have to watch what I eat even more. I can't eat a lot of bread and grain products. I can eat wraps and pita's in moderation. However bread of any kind gives me a head ache. I can eat homemade or bakery cookies but not a lot of cake. I can't eat oatmeal either. Even the gluten free stuff. So I am still not 100 percent certain what causes my migraines but at least I'm getting it narrowed down.

So I have joined boot camp here in town. I have started to watch my calories not in a crazy zealot kind of way, but in a normal-you don't need to eat that kind of way.   Hopefully I can stop the scale climb and maybe reverse it a bit.  It's amazing how you can cut out so much food and still find enough food to gain weight. 

But on the upside not many headaches.  Better all the time.  

I'll keep you posted.  Have a good day and thanks for the reads!