rheumatoid arthritis sucks

By Kelley Monday, August 18, 2008

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I am 39 and still clinging to that number still in the thirty range. My name is Kelley and I've been ill since I was about 25 or so. Time flie when you're having fun. I have two kids, the oldest is 19, the youngest is 15. Each of them have their own demons. Shay, the oldest has ADHD and oppositional defiant disorder. I don't buy so much the ADHD, he really just needed to be taught differently than an ordinary school. My daughter has suffered from ocd from about seven years old. The stress these two bring me is enough to literally raise my white blood cell count. No joke. The rheumy told me straight out that was the deal. My primary, was baffled. Primaries usually are.

I just started remicade and just did my fourth dose. I don't get the dosing at all. I know they start out low but for my fourth she was going to raise it to 300 (mg?) but still kept it at 200. No matter, it makes me feel like crap. The day after, my legs don't want to work, I fall constantly and bounce into walls. I already have two weeks out of each month taken away because every time estrogen fluxes, like pms and menstruation, I'm down for the count.

I do want a life. I feel like I lost half of it and while I try to be patient, the pain makes it hard. I'm always in pain and I'm losing it. Loratabs don't work, something with the chemicals in my brain and other people who have things like fibromyalgia. Certain drugs are ineffective. Morphine is the best but the doc is hesitant. She has me on oxycontin but wrote it as generic, so I got straight ol' oxycodone. She forgets all oxycontin is extended release and the makers were sued so getting the generic type is impossible. I think with certain drugs, the brand name is better. Thankfully, my husband has ok health insurance. I'd be up the creek without a paddle if he didn't.

I got so frustrated with doctors, especially the primary docs who play specialist and make me worse. I was diagnosed with so many things, all had aspects of autoimmune but they rely on the blood tests and about 40% of people don't show the ra antibody. Lucky me to be one of them.

I'm not usually so crabby but pain does that to you. Takes away your optimism as well as your sanity.

I hope you guys are doing better than me. Avoid stress at all costs, that is my advice to you. It kills.

Warmest Regards to all of you,

Kelley

exercise

Comments (9) | Add comment

krista

8/20/08 8:59am

If you read this comment Kelley I hope it helps. I don't usually post on forums so forgive me it this sounds awkward. All my living female relatives have RA. They were first diagnosed from ages 32-63. This disease is serious and very real. They all had to realize that medicine is only part of the answer. Postitive changes in lifestyle, diet and stress management (you are so right on this one) are huge in in the management of RA. Drugs can only do so much.

My Mom has been so successful with this most people don't realize she has RA and she has had it for almost 25 years. I can share more with you about how she manages her RA and maybe it will help. Just let me know it breaks my heart to hear your pain.

Krista

fellular

8/20/08 10:16am

this is for krista and kelly.

I would love to hear about krista's mom and how she copes. kelly's letter could have been written by my own hand, except I have different stresses, including a full time job, that i have to keep cause I carry the health insurance for my family. please share

Kelley

10/10/08 7:33pm

Thank you for wanting to help me by sharing your own dealings with this 'monster'. Truly, I'm scared I went to a neurologist yesterday and will have to get another MRI. I've had so many, I lost count. It's possible I have MS because my mom and her mom had it. Truly, the RA scares me more. I try to relax but can't. Pain makes me nuts especially at PMS time. Every damn month. I'm just so angry and I'm not an angry person and don't know how to process it. My hands took a beating after four doses of Remicade. To me, it was poison and took away my last summer before I turn forty. I want this decade approaching to be better than the last two. Don't I deserve it? I don't want the test results from the MRI. But, have to. Please pray for me. Thank you for your words and your thoughts. If I mispell anything, it's because I can't type well. I have a philosophy degree and feel so very stupid. I'm just a fixture now.

Warm Regards,

Kelley

GO SABRES!

Kelley

10/10/08 7:56pm

You strong person, to work full time. I have a hard time just being a mom. I understand the insurance problem.

May the Lord Shine His Face Upon You. you've earned your place in heaven. I would like your strength and fortitude.

Warm Regards

Kelleybme

Kelley

10/11/08 12:07pm

Krista,

Thank you for your words and honesty. I so wish I could work but I know I'd be fired as soon as I get a flare. I can barely move and my mood goes to hell. I really think RA effects the brain.

How does your mom cope? On good days, nobody can tell how sick I am. That's good and bad. If I'm good, I get asked for a lot of things to do. If I do them, flare up on the way. "You don't look sick". Then I show them my hand and they know. I don't want people to feel sorry for me but then again, I would like sympathy. Especially from my family. I need their help and teenagers aren't so willing to help.

When I feel good, I always do too much and always screw myself up. Yikes.

I pray a lot.

Warm Regards,

KelleyBME

spirithere54

8/24/08 5:11pm

No need to apoligise for how you are feeling emotionally but you are so right that we need to keep our emotions in check if we want the best for ourselves coping with an illness. Stress can make things worse for ourselves and other people in our life.

I understand how hormones ; pms etc. can make our RA worse . I had a hysterectomy in 1992 but I do remember the physical pain and emotional rollar coaster in a 5 week cycle. I felt like I had the flu every month and I even had a low grade temp and inflamation made it hard to do things .

As for pain medication we are all different and what works for one needs to be understood by the practicing doctor. I know that any medication has side effects that can make our illness worse so we need to be careful.

I hope that Remecade helps you and keep us updated and let us know. You are a brave person trying the medications that are offered to you.

Your children have their demons that they need to deal with also and I am sure this makes it hard to keep your emotions in check.

Spirithere54

Kelley

10/10/08 7:41pm

Thank you for your support and fond wishes. The remicade failed miserably. My whole summer was messed up because of the poison. I wound up with hundreds of bruises that appeared while laying in bed. I went to my son's graduation with a raging fever. The docs called it 'delayed hypersensitivity'. At the moment I got the courage to go to a neurologist because I've had signs of MS in the past. My mother had it. In fact, I was the one to find her dead in her chair. She had such a great day too. It was peacful and being the one minister in the family I buried her. Her mom had it too but I didn't know her as she passed when my mom was in the third trimester with me. The curse is that we were all born on a 23rd. I'm such a baby. I've had tests for MS before but never got the results. It messes with your head when you know the diagnosis. Oddly, RA scared me more than MS. But picturing my mom, i think comodes, catheters, muscle ridgity, bedsores, and a bed in the living room with no privacy.

By the Grace of God, I will beat this. Thank you for your welcome and for caring. It means so much to me.

Warmest Regards,

Kelley

Patricia R. Moynihan

8/25/08 9:53am

Do not be misled by the warm and fuzzy TV commercials directed at you by the big pharmaceutical companies. Those companies do NOT have your welfare at heart. They're in the dairy faming business and you are their prize cash cow. They milk and they milk and there is no end to their ingenuity when it comes to separating you from your hard earned dollars.

We all know about Vioxx. We know that the FDA licensed this drug, despite obvious lethal side effects, and advised its use for arthritis sufferers, in particular. Arthritis patients are very vulnerable. They can't move without pain and they frequently are used as guinea pigs by their own doctors as well as Big Drug companies. The FDA is so influenced by Big Drug, that it rushes to license medication without proper testing. In the case of Vioxx, it was obvious for years that Vioxx caused heart attacks in those very vulnerable arthritis patients for whom it was prescribed with gay abandon.

The editor of the Lancet states that the FDA and Vioxx's manufacturer, Merck "acted out of ruthless, short-sighted, and irresponsible self-interest."

That's just one indictment. Merck, manufacturer of Vioxx was forced to settle thousands of law suits. But how many heads rolled in the FDA? Well, none, actually. It took a whistle blower to expose the true risks.

For every high profile disaster like Vioxx, there are hundreds of silent killers pushed on a trusting public, which falls for those warm and fuzzy TV commercials. Note that Big Drug is not permitted to advertise to the public in any countries except the United States and New Zealand. There is a very obvious reason for this. Sick people are vulnerable. If you advertise a drug that you say will help them, they're going to ask their doctor to prescribe it for them. They trust you and they trust their doctor. They shouldn't.

Big Drug Companies actually invent new diseases, for which they offer a panacea. When did you discover RLS, Restless Leg Syndrome? When you saw it on a TV commercial, that's when. Now you think you might have RLS and maybe you should try that drug which purports to cure it.

Be afraid. Pay attention to the very fast disclaimers at the end of those TV commercials. They paint the true picture of life on unnecessary drugs.

Kelley

10/10/08 7:54pm

remicade poisoned me, as did methotrexate. I go to an old school rheumy who doesn't like to add to the drugs. I'm going soon to a new rheumy for a 2nd opinion because my usual doc's physican assistant brought up the two terrible words "Cleveland Clinic". I used up 2 grand already for meds, copays, etc. i go for a new mri soon for the neurologist and this time, I will listen to the results. I'm just so sick of infusions.

After the remicade was ceased my left hand got deformed. It hurt so bad, I thought I broke my thumb. I never had it in my hands. I knit to keep my anxiety down, I garden, I make jewelry so now I actually am in mourning over my hand. I would like to handle this with grace but my life has been so long and hard, it's tough. I don't know how to relax. None of the twenty bottles of pills on my dresser help.

They were supposed to start me on oracia but cancelled it because I was developing hundreds, literally, of bruises simply by laying in bed. Oh, after a remicade infusion, the next day, I couldn't walk. I had a raging fever for my son's graduation. He has learning disability and over the years I fought so hard for him, so with my luck at his graduation, i have a 103 fever from the remicade. It took my summer. My last summer in my thirties. I want the next decade to be better. I want to live with quality and dignity. My brain gets so confuzzled. I'm smart! I have a masters in philosophy, which could be my downfall because I think too much.

I feel like I'm just whining like a baby. I was just diagnosed over the winter in the rudest way. I had a notice for jury duty and the doc's assistant wrote down I couldn't serve becuase of rheumatoid arthritis. That was the first I heard. Now, I find out that my hand will never be the same. Stress in my life has added to it. My daughter has obsessive compulsive disorder, since she's been about four. My son has adhd and oppositional defiant disorder, husband has a bit of an anger problem. All those years of stress took their toll.

Please don't think I'm always like this. I used to laugh, be fun,etc.

Warm Regards,

Kelley

rheumatoid arthritis sucks

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