latest and greatest update on me .... hmm sarcasm.

By texasleo/Kevin Monday, October 25, 2010

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Well here I still am wondering what to do where to go and how to do it. So after being diagnosed I guess better than a year ago now. My rheumy and I are still playing find the cocktail of what will work. I am sposed to be starting Orencia here pretty soon oh yay I cant wait. Ya more sarcasm. Im sick of the drugs Ive quit all my pain meds <bad choice on me to do it cold turkey> I find out most Docs just dont know a whole lot. I had a laminectomy on L4 L5 and S1 back in the beg of Aug. Im thinkin it helped get me off the cane but now I have a little more back issues. Ofcourse that could be due to the amount of nerves that are all back up to there normal size again after being compressed by the bones they removed. Which meant getting off the MTX as much as I hate it I missed it. I stil have a lot of swelling and inflamation in my hands my knees my shoulders my knees still grind where I can hear them struggling upstairs or down. I get mad cause I cant do anything anymore I try little things and get frustrated from the pain and just not being able to make my hands or body do what I want. Im a blue collar guy and I have always had good hands to build to create and I have the skills to do it very well but my body say absolutly not. RA you have taken my life from me my business my home my bank accounts my credit. Im about sick of you and wish you would go away. I wish the damn meds you require me to take didnt make me tired or feel like butt. I wish the Drs would find one to work instead of search and peck. I have bruising from the antibitic I was on for months and months wondering if an infection may have been hiding so no more of you but i sure have ugly ER legs now. AND the roids how can I forget you roids you make me fat where none of my jeans fit me I need a whole new waist size. You bloat my face and head to look like a melon and now I find out the marks on my stomach are strech marks from you. Thanks so much for those right out in front of me too. I am not even that fat. I went from a 31 in waist to a 32 in and lets no forget the lovely mtx which we think is making me break out in like mini zits all around my torso and arms. I am sick of everyone going oh my gosh and im sorry and im too young or look at me like Im faking cause nothing is really visual, or even the ones who say "oh yea I have RA too" when ive known them for years and know it isnt true. People hear the arthritis part and just jump off to all different conclusions. Granted alot of people with RA are not modererate or severe cases . im 38 now still single no children and I really am wondering what is next.

Comments (3) | Add comment

Lee Monette

11/10/10 9:39am

Texasleo,

I am reading your blog and can relate to your sarcasm!! This disease really sucks. Not only does it take so many meds to control but as you said, the meds can make your life just as miserable. I am 44 and was diagnosed a year ago in Nov. with RA. I started on prednisone and methotrexate which caused a moon face and sores in my mouth-great right!!! I loose hair in the shower everyday but thank god I was blessed with alot of hair so you can't notice.. I am currently on my 2nd TNF med-Enbrel-don't see a difference. I unfortunately have been taking more pain meds-hydrocodone-I wish I didn't have to but I need to function for my job. Anyway, I can totally relate and please know you are not alone.. You will find someone to share your life with regardless of your illness.. Keep up the sarcasm I think it's a good way to help cope with this sucky disease... Lee Monette

Lene Andersen, Health Guide

11/18/10 12:25pm

This disease sucks. There's no way of making it pretty, sometimes it just sucks. It takes away your life, your work, your social life, your self-esteem and yes. It sucks. And it's pretty obvious that right now, you're having a particularly rough time.

The thing about meds is this. We are all taught that medications are chemicals, that they should only to be taken for a short amount of time, that taking "too much medication" is bad for you and so on. However, you have a chronic illness like RA medication is your friend, not your enemy. Medication is what will eventually give you back your life. The trick is to find the one that does that and the trial and error method is really aggravating, but when you get there, it's worth it. I hope Orencia is the one for you - the Biologics can really kick butt and be true miracles in a syringe/IV bag. If Orencia doesn't work, there are eight or nine other Biologics that you can try. I had a terrific flare in 2004, one that took away my life, all of it and I started Enbrel in January 2005 and got my life back. After two years, I had to switch to Humira because of side effects, but it turned out that Humira worked even better for me and I've been on it since. These medications are scary, they do have potentially big, serious side effects, but for many, they are miracle drugs with entirely manageable side effects. When I say I got my life back, I mean all of it and then some. I'm in much less pain, I'm able to work again, I see my friends and family, I laugh every day, found myself relationship with a wonderful man, I'm active in my community and enough about me.

My point is that when you have RA, you have to switch perspective, start seeing medications as useful tools that serve a purpose, the purpose being getting back to living as much as you can. Check out my post called Better Living with Chemistry and you may also want to check out my post on managing side effects for tips that can help you get things down to a dull roar. Most of the time, managing the side effects, reducing them and living with some of them becomes second nature, an easy trade-off compared to what the medication can give you.

As for pain medication... You may be cutting off your nose to spite your face by not taking them. I know it bites having to take them, but again, they are a tool to help you do things. Sure, you have to manage your energy, but you can increase your energy and ability by taking painkillers. Staying ahead of the pain means your life is better and sometimes, that means taking.

thank you so much for sharing your story.

WolfBayClar

1/ 7/11 3:45pm

My mother was diagnosed about 30 yrs ago with RA. Trust me, the way it's treated now is better. Back then you took lots of aspirin for a long time. When you got a bleeding ulcer or constant ringing in your ears they would prescribe the next med, perhaps methotrexate or gold salts. Even though pain might be reduced, the joint damage was still ocurring. The "hit it fast and hit it hard" treatment that is more common today may be rougher on your body initially but it usually gets the disease under control which means less damage in the long term. My mom has used Remicade, Humira and Orencia in the last decade and they all worked for a couple years at least. She chose to discontinue Orencia in September (for a stupid reason) and her RA began flaring up again in late November as we expected it would. Now she's in a lot of pain and has to wait 2 more weeks before she can see her rheumatologist. If you're still not in favor of the chemical cocktails, check out Roadback.org for another possible treatment option. Good luck. It gets better.

latest and greatest update on me .... hmm sarcasm.

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