We’re in good company!

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I’ve been a little upset with myself lately- mainly for my lack of follow through on certain commitments to myself.  The actual diet plan is going…ok.  I’m not cheating as much as I was.  The no caffeine thing…lasted a day.  If even.  The whole “get out of the house and meet new people in this new town you’re living in”….ok but not great.  At times the RA doesn’t help (fatigue, hurting feet, nausea from mtx) but there comes a point where it becomes my excuse too.  That has got to stop!

In the endless quest for inspiration, I’ve been reading and searching online for direction.  I inadvertantly stumbled upon a quote that made me smile and then a story that knocked my socks off.

“I would rather regret the things that I have done than the things I have not.”

- Lucille Ball

I grew up watching reruns of “I Love Lucy.”  I would laugh hysterically at the silly situations she got herself into and loved  the crazy faces and gestures she would make.  I may have even gotten into trouble once or twice for trying to recreate some of her famous slapstick physical comedy which resulted in me having my head swung into a wall.  Explains a couple of things, right?

From seeing her show and reading about her, I can totally see that she lived this phrase to its fullest. 

And then I read that Lucy had Rheumatoid Arthritis.  And she was doing all of these hijinks while feeling the same pains that we all are.  And hiding it.  Can you imagine?  Talk about putting on a brave face x1000!

You can read about it here.

 Looking at everything that she accomplished and knowing that she accomplished it in a time where there were hardly any effective medications and at a time where disability was not spoken about, it makes me very grateful to be dealing with this in 2010.  

It also makes me realize that I am my own worst enemy.  If she can do it, so can I!

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24 responses »

  1. I agree – we are our own worst enemy. Every Sunday at Church there is a quadriplegic who shows up faithfully. Not that I dont have a right to be bummed about RA, but sometimes I have to remind myself that I can still walk and I can still use my hands (even though it hurts bad).

    I went out and bought new running shoes for the treadmill. I usually walk it but I am gonna try to start pushing myself. I find the bed calling my name way to often lately!

    I agree with you, I think with RA, at least for me, I have to push myself, or I find myself laying in bed all day long.

  2. I know what you mean, I’ve realised lately that ok, my body may be attacking itself, but my mind doesn’t have to join in the self destruct party. I’m trying to be more upbeat and ignore the small aches and pains that sometimes get me down on an otherwise very good day. Been back on my bike the last few days, with spring coming now. It’s great, I missed it! Good luck with the resolutions!

  3. The mind game is just as hard as the rest of it.

    I had words with dh the other night because he was all excited that I was feeling “better”. I accused him of being insensitive because I was in no way feeling better. He said “but you haven’t complained about pain today” and I said “I’m sick of hearing it so I’m assuming everyone else is too. I just try to stop talking about it but I’m always in pain.”. He tries but he just can’t wrap his head around it.

  4. I am going to read your link, but I always heard that Lucy had JRA, and that she pretty much went into remission after age 18.

    Hmmmm…

    - RA SB

  5. Hey,

    Yeah, I read the link, and I still left with the impression that the thing they thought was RA was either not RA or it remitted after a time.

    I’m not trying to kill your post. LOL. I still think you have a really great point here. I just don’t think Lucy would have been able to keep up with her shooting schedule had she had the same thing we have. Although, if she had a mild form, maybe. Some people say their RA is under great control and they are doing really well, but she didn’t even have MTX then, did she? Hmm…

    Well, how about this…have you read Kathleen Turner’s book, Bring Me Roses? I think you would like that one, Amanda!!! She definitely had RA, but she describes the years she had to stop working b/c of it or when she did work, how she had to work around it. She took a GREAT deal of steroids though, and abused alcohol in order to numb the pain.

    • You’re not killing my post. :) RA or JRA- I still thought it was interesting. I can’t find much more information besides what is posted here- she has an autobiography which I’m going to order to see if there’s more info there! I’ve also tried to google to figure out what the “horse serum” or whatever was and haven’t found anything yet. I’m intrigued! Yes, I’ve heard about Kathleen Turner’s book too and need to order that one as well! I read somewhere about her that she not only used alcohol to numb the pain but also allowed the rumors of substance abuse to run wild to help hide her RA and effects of long term steroids. I hate that for her…but I do understand.

  6. Great post Amanda! Kathleen Turner takes minocycline for her RA. That will probably be the class of antibiotic I will be given at my first appointment in two weeks. I’m gonna look for her book on ebay….thanks RA SB for mentioning that. I had read also that Lucy’s RA was JRA but didn’t it return later? I wish she would have been more outspoken about it but neither was Kathleen Turner….they worried about never working again if people found out…so sad…..

  7. Amanda,

    Let me know what you find out about Lucy. I’ll be interested to know once and for all. And you’re right – maybe it was the “horse serum” that helped her. LOL! Let me know if you find anything on that!!!

    I pulled out the Kathleen Turner book last night after I wrote about it b/c I hadn’t read it in so long. She doesn’t even start talking about RA until page 143, but once she does, she really does let it rip. She makes it clear how awful the disease really is and how much it affected her whole life. You are right that she did let people think she was addicted to alcohol long before she actually was, but eventually she did figure out that it numbed the pain, I guess.

    Leslie, I didn’t know about the minocycline. I have been looking and looking to find out what she uses. In the book, she says she lays out her treatments on RAaccess.com, but the website is not longer up, so I couldn’t find the info. How did you hear she was on the minocycline? I’m wondering if I should try it since I have only done so-so w/ the biologics. The Simponi is probably working the best so far, and it works only to keep me out of the E.R. really.

  8. Thats an old article …but everything I’m finding since then says she uses minocycline and Celebrex. She is having to have some joints replaced. Once the damage is done ..as you know..its done. Minocycline doesn’t repair what has already been done. I’m trying to find another article from a more recent interview that I read last night of hers but I’m not having much luck. I should have saved it argh!

  9. Ok that is the only official article I can find where she states she takes minocycline and Celebrex. Most everything else out there is other people quoting from the article. This article is old..from 2001. I wonder if she is still on this treatment? I read where one person posted about her being an Enbrel spokesperson but I haven’t seen her do any commercials or seed any ads with her for Enbrel..have you? Idk…I wish there was a more recent article.

  10. Hey Leslie,

    I’m sorry you went to so much trouble. Now that I realized how much you’ve been researching that option, I totally believe you read it someplace. My husband and I read Arthritis Breakthrough a couple of years ago. We approached my rheum. about it, and at that time she didn’t seem to think it would work b/c my RA was too advanced. But then a year ago, she brought it up as an option and confused us. I am going to mention it again and see what she says.

    BTW, I saw that you brought it up on RAWarrior’s website, and she seemed to say that she was skeptical, rather smugly. A few of us feel that she is often smug, so don’t feel badly. I only bother to check the site occassionaly b/c she does post some good medical info. But as new blogs pop up, I’m finding I can find that info. in more places without encountering her own little slant to everything.

    But thank you for bringing this up. I’d like to maybe try it. If you want, write to me at rablogger@yahoo.com.

    Thanks for letting us chat, Amanda. And A – don’t forget to get the book. I figured out how to do the book discussion on the website, so we’ll try it. I’m excited!

    • I haven’t seen any Enbrel ads featuring Kathleen either and I just looked at her website. She has a “causes” section and there is nothing listed RA related. Curious! I too would love to know what she’s doing now. BTW- did you know Paula Abdul takes Enbrel? I’ve read conflicting reports as for what- some say arthritis others say RSDS. I, for one, am happy she is not doing RA/Enbrel ads although those would probably be really funny. SB- if you are protecting your identity because you are Paula Abdul in real life, I mean no offense. :)

      Leslie- I can’t wait to hear how minocycline goes. I’ve been interested for several years- one of my uncles is an MD and referred me to The Roadback and sent me all sorts of articles when I was first diagnosed. My rheumy at the time was very dismissive of it (actually his words were “I hope your uncle doesn’t treat his patients this way). But my uncle has had a good deal of success with it in his patients. I’ve been nervous to make the switch- my next rheumy was open to it but my first one was so crappy and allowed me to lose treatment time so my new one wanted to wait until my symptoms were better controlled until we tried it. She did let me try sulfasalazine which really helped. And then I moved and have had to start over with yet another rheumy who isn’t open to it. So, I can’t wait to hear how you do and hopefully once I get things stable again, I can try it too!

      SB- LOVE the book club idea. I now have 3 books to order- and I LOVE reading- so that is a good thing. :)

  11. Amanda,

    You totally figured me out. I AM Paula Abduhl, and you are a “cold-hearted snake.” HA! J/K I couldn’t resist. You’re too funny!

    So you say the sulfasalazine helped? Did you take it with MTX? I actually have a whole bottle of it here that I never started b/c I happened to have the stomach flu at the time, and they kept telling me that it would likely cause nausea. Now I’m wondering if I should try it. hmmm.

    • Tell MC Skat Kat I said hi! LOL

      Yep, I think I actually respond better to sulfasalazine than I do mtx. I’ve never had any nausea issues although I’ve heard others have. I take it right before bed. I do take it with mtx- I did ask about the combo and my rheumy wasn’t concerned about it bc both are low doses. Also, I don’t take my mtx like I’m supposed to bc of side effects so a lot of times (like now-fighting a cold and if I do take the mtx, it makes me feel even crappier) I don’t take mtx for weeks or longer so its just the sulfa. On the flip side, when I take just mtx and no sulfa, I don’t feel like my symptoms are as well controlled.

  12. Hey…thanks SB …..I certainly didn’t want to offend Kelly and I felt bad afterwards but I did feel she got a little defensive. I am finding a lot of people are defensive about their RA meds…oh well…whatever works for them right? I am so amazed that you two are interested in it. Like I said, I am finding so many people against it and some are down right rude….making Kelly look like an angel (grins). You don’t need a rheumatologist to prescribe it. As a matter of fact..the doc I’m gonna see is a family practice doc. Her mother has RA and she herself has fibro so I figured she would understand more of what I’m going through. Here is an article she wrote http://www.rheumatic.org/rima.htm This explains why she started using AP. She came highly recommended by the guys and gals at Roadback. They can give you the name of a doc near you if you decide to do this. I am on facebook on an RA support group site and boy have I been put through it there lol….but I’ve also found lots of people interested in it. I received an email today from a lady who has only been on it a short time and has already been able to decrease her prednisone. I feel SO much better off my mtx and Arava….I’m not so fatigued or foggy-headed. As far as Paula Abdul goes….Straight Up now tell me we need something to help our RA…hehe! I couldn’t resist :D

  13. Amanda, I meant to ask you in the above post if your uncle could prescribe it for you? You know, it is kinda scary changing totally but after reading the book I am convinced. I have an inquisitive mind and was always asking what caused this. I mean something has made this happen. The book answered lots of questions for me that my rheumatologist never did.

    Hey SB…thanks ….I have your email saved :)

    • I’ve noticed people being defensive of meds too and I don’t understand it. I mean, we all know that different things work for different people and learning about it certainly doesn’t mean you have to try it!!! Oh, my uncle would probably prescribe it if I asked but we’re in different states so that complicates things. I’ve been awkward about it around him too ever since the conversation we had about minocycline where without thibking I asked if it would interfere with my birth control pills. Yikes.

  14. well that is certainly something you need to know ….I didn’t even think about that for you younger gals. What was his answer? I wonder if the low-dose antibiotics DO interfere with BCP? I’m 36 and do not plan to have any more kids but I’m also not in a relationship or want to be right now. I would feel differently if I were your age.

  15. A-

    That’s too funny about the BC pills! But a girl has to know these things right?

    L-

    Feel free to write anytime! No smugness found around us, right guys?

  16. P.S.

    A – Speaking of BC pills, I think it would be fun if you blogged about dating, Amanda. But I do understand the trickiness of it since you have your full name out there, and being that it probably is an alias for Paula Abdhul.

    (Now everyone is suspect!)

    • YES- no smugness at all. SB- I would blog about dating except that most of my probs don’t involve RA but rather the fact that I am extremely attracted to tools. I don’t care about my name being out there- the last guy I dated wasn’t smart enough to operate Google. ;)

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