Tuesday, March 15, 2011

A Tale Of Two Bad Knees (and hips and elbows etc.)

I just got back from the gym where I had a session with my trainer, and it was so positive that I wanted to write about it. But I thought, before I get into blogging about my working out, I should finally tell the story of how things got to where they are now. It's not a pretty story. But it's an important one.

It's also a long one, folks, so hang in there.


My poor lil body needs some rehab. But it all started last winter . . .

I was on this detox kick for a while. I wanted to rid my body of all the nasty stuff that I put into it . . . like, ahem, soda and sweet potato fries. Thus started my Paleo lifestyle and all the goodness that came with it. But there was still my medicine . . .

I don't want to get into the drama with my old medicine and the insurance situation I had to deal with. That's an entire different blog post.Let's just say my relationship with the hospital, the insurance company and my medicine came to an end. It was a messy break up.

At the time, I realized I had been on the same medicine for about five years. The medicine was called Remicade, and while some call it a miracle drug, it's one of the heaviest arthritis drugs out there.

It had to be given through an IV and it took about four hours to administer. And after five years I was questioning what this medicine was really doing to my body.

 
Hey, I gotta lighten up this blog entry somehow.

So I was pondering this, as well as going through other turmoil, and decided . . .  

I'm going to go off the medicine!  *

Crazy right?

I flew back to WA to see Doc Wiz and I was nervous. I mean, how crazy is it that I decided to go off the medicine without consulting him first? Was he going to flip out? Tell me I'm out of my mind? Tell me to go back on it? Oh the madness!


But funny enough, Doc Wiz did not react so negatively. He agreed that if I felt I needed to do this, and I was in good shape so far, I should go ahead and see what happens.

I was reminded a while later by a friend, Carol (who also has arthritis), that your doctor is there to help you though it all. And whatever you want to do, your doctor should support your decisions. If you aren't comfortable with something, your doctor should never force you to do it.

Six months later, we moved back to Bellingham.  . . .That's when the trouble started.

Swelling in my knees, hips, elbows, wrists . . . 

It was all awful and all very painful. I can't even begin to tell you how many tears I cried and how frustrated I was that I couldn't walk the two blocks to the book store to get a book and a coffee.

Our storage unit before I organized it. 
And I did all the organizing with two swollen knees.

I took prednisone. I took methylprednisolone. I had steroid injections. It worked for the short term, but it all kept coming back.

I had to see Doc Wiz again and all those nerves from months ago were back. What if he makes me go back on the medicine? What if I made a huge mistake?

I spent my birthday with swollen knees. 
Birkenstocks were my go-to shoes.

But again, as a good doctor should, he was supportive of my decision to stay off the Remicade. Instead, the two of us decided that I should give Enbrel another try. (I had been on Enbrel for a while when I was a teenager.)

About two months later, I was good as new! . . . almost.

At the time of this picture I had at least one swollen knee and one swollen elbow.

In November, Doc Wiz checked my joints out and all my swelling was down. But so were my muscles. After four months of little to no physical activity, my body had gone down hill. Even though my eating habits were great, I had gained weight from having to stay off my feet for all that time. And those of you who have been through a similar situation in which you are stuck on a couch for weeks or months at a time, you know how quickly you lose muscle. I lost so much muscle in my legs especially, that I was exhausted and could barely walk a few laps around my little neighborhood.

I spent most of the Summer and Fall icing my knees with this lil guy.

So Doc Wiz recommended that I find a way to budget in enough money to pay for a gym membership. Since I couldn't easily walk on the pavement due to the jarring effect it had on my knees, I needed to be able to access the equipment at a gym in order to get any cardio. And if there was a way to meet up with a trainer to help me get my muscle back, I needed to figure out how to do it.

So can you do that, Lyda?

Well . . . I'll have to convince Mitch . . . 

Want me to write you a prescription for it?

. . . uh . . . YEAH!


Doc Wiz, being the hilarious man he his, wrote me a prescription to give to Mitch, to let him know how important it was that I do this. My Doc and I were laughing the entire time he wrote it out. I couldn't wait to see the look on his face when I handed him my prescription.

Unfortunately his reaction was simply . . .

Sure. We can do that.

. . .Wait! Did you read it? It's funny!

So we got ourselves a gym membership and luckily to the gym that is right next door. My doctor recently hooked me up with a trainer there who specializes in sports medicine and works with a lot of people who have arthritis and knee pain in general. I'm finally starting to get back to normal.

No amount of arthritis will ever keep me from eating my birthday cake!


So that's where I am now. I'm still recovering. It gets frustrating quite often, when I realize that there are things I used to do with ease that I now have to really work at. Some things I just can't do at all anymore. I have to take things very slow, and that can be hard. But someday . . . I'll be back!



More about my training soon to come!



*Note: I have to give another shout out to my friend Jen down in Utah. She was the first person I was able to go to to talk about the whole ordeal with my medicine and my insurance and my decision to go off of it. And she was the perfect person to talk about it with too. She gave me so much support and motivation, and was so caring through my troubles that when I look back on that situation and how stressed I was, I nearly cry thinking about how much she helped me get through it! Don't know what I would have done without that girl! Thank you.

9 comments:

  1. I think it's amazing that you've got a doctor that supports your decisions. I've not been so lucky; I'm told how terrible I will get and what a bad decision it is, if it's not the decision HE would make. Stick with that doctor!

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  2. Kristy- you need to shop around for a new doctor. I've seen doctors who pressured me and scared me and it's awful. You need to feel safe with your doctor and find someone who is trustworthy. RA is such a controlling factor in your life so you need to have a doctor who is willing to work with you and your lifestyle to find the best way to treat it.

    If you're really wanting to look into it, try the Arthritis Foundation connections for doctors in your area. I would highly recommend it!

    Lyda

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  3. I followed your link from RA Connect. RA hit me at age 53. It always makes me sad to see a young, vibrant person struck with it before they've grown up. I admire your decision to stop meds. Sometimes I think we need to clean out the system and look at things with new approaches. I've been on Enbrel for 3 years and it has restored my ability to enjoy life again. And shoes! Oh I love shoes and can buy just about any kind I want now and not wide, clownish ones. I'll check back on you now and then. Wishing you continued pain free days!
    Marcia

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  4. Thank you for your support Marcia! Enbrel seems to be working great for me as well. And don't even get me started on shoes! :-)

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  5. You know what is so beautiful about your blog on this ? You are still living life ! Yes, a few modifications, and some restrictions, but you are not sitting around having a pity party, you are still going for it ! Don't stop ! :)

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  6. You know what is beautiful about your blog ? You are LIVING LIFE ! Yes, with a few modifications and some restrictions, but you are not letting RA hold you down. Go for it !

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  7. Lori -

    Thank you! I hope that my blog can help other people realize that it is possible to live a good life with an auto immune disease! Sometimes I feel like I should spend more time talking about my RA but then I think it's important to also talk about the other things in my life that make me who I am - I'm not always hung up on it that I can't have fun! :-)

    Ladies, let me know if you have any ideas for future blogs ;-)

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  8. Hey Lyda I heard of you on Facebook and checked youre site your attitude is amazing you dont let ur arthritis stop u doing what u Want to do I wish I had a mindframe like that I seem to have the opposite mind to youres im 21 with osteoarthritis in left hip I know RA is different in ways but I can relate to a lot of you're blogs it's nice reading you're story's it makes me know I'm not alone none of my friends have arthritis so I can't talk to them about it your family etc don't understand workmates the same be gd to hear from you
    Steven :)

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  9. Hey Steven! I'm glad you found me! It's definitely easy to get down about things - I definitely have my moments. But it's great when you're able to talk to other people who understand what you're going through. I'm happy to hear that I can help. I'm a good email/facebook buddy so feel free to send me a message any time!

    Lyda

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I love your feedback! Leave a comment and let me know what you think, and feel free to send me an email any time.

xoxo
Lyda