finally had to face it

By jane Thursday, May 14, 2009

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I was diagnosed three years ago. I have been through two doctors and am on my fourth biologic. It keeps advancing through my body and keeping me in constant pain. I found a picture of myself with two of my grown daughters. I looked ten years younger and was half the size I am now and this picture was taken 2 1/2 years ago. I was healthy and accustomed to doing lots of physical activity with my family. We are an active bunch. Now, I can't join in. I am the grumpy, fat, old person just watching the fun. I have been waiting for the magic med. The one that would make me myself again. After I found the picture, it hit me that the person is the picture is gone. I am the person with RA and the person who is rapidly losing my ability to move much. Now, I have to find a way to be that person graciously. But, all I feel is pissed off. I don't know how to live being me now. I thought I had it handled. I was doing everything right and being the perfect patient. But, now, I see that I was waiting for it end. And, now, I see that it won't end. How do we accept that?

Talking about our pain

Comments (18) | Add comment

chris miller

5/14/09 12:47pm

DIDDO! Your story sounds very similar to the road I'm taking. Tried Enbrel, Humira, Avara, Methotraxate, prednisone. The only thing I can depend on is an occasional Vicidon. I have the moon face, bull horn on back on my neck and put on about 25 lbs over the last two years. I tell my husband that maybe I should join the circus. Now the doctor is going to start me on Orencia infusions. After a while you lose concern over the side effects and is willing to try anything. Stress does play an important part so if you can just walk away from stressful situations, focus on yourself, take time to relax and try to keep positive thoughts (can be hard but it does help). Will be keeping you in my thoughts, better days are ahead. Chris

jane

5/14/09 1:36pm

I am so sorry that you are going through the same thing. I will try to do the stress thing. I teach high school so that isn't always easy but it's a good idea. Thanks for the support and I do hope that you get some relief too. Let's keep in touch. Jane

Ellen Galo

5/14/09 1:01pm

Have you had any positive reaction to any of the biologics you've tried? Wow, that would be discouraging, also make you wonder if a doctor is on the wrong track somehow. I see in your previous post, you were thinking about finding a new doc - did that happen?

The only 2 things I can suggest is

i) if Orencia doesn't work, there is a person on this site who takes Kinaret, it's a daily shot. Nothing else worked for her, but Kineret does.

ii) also maybe to check out "The Road Back" (the book or the website) about the antibiotic protocol for RA. Not all rheumys will do it, but I have talked on the phone with at least 2 people who swear by it - it's a slow but steady improvement they have experienced.

best of luck -

Ellen

jane

5/14/09 1:38pm

Ellen,

Thanks for the suggestions. I have wondered why my doctor hasn't tried the antibiotics. I will ask him about it. I did change doctors. He has me on remicade now. I have been on it for 6 weeks with no change. Nothing from any of the others I tried; enbrel, humira, rituxan. I will get the book. Good idea. I am tired of living in a world where nothing works. Thanks for the help, Jane

Ellen Galo

5/14/09 2:06pm

Hi Jane,

You may have to look for a doctor who will do the antibiotic protocol. It's not something they were taught in medical school. My doctor said it showed promise but it didn't pan out when they did a clinical trial. I think that might be because it might have to be so individually dosed that it wouldn't give a standard response. Or, because there are so many kinds of arthritis and not all may respond. There are also genetic differences between people that can make one person more susceptible, or responsive, just like with cancer and other diseases. (I have it in my family ; I'm also particpating, with my sisters, in a clinical study of comparing the genes of people with RA with others in their family who don't have RA.)

There is one other site, non-traditional treatment for autoimmune diseases, which I don't totally recommended, except that it may help you find a doctor in your area. I found out the name of a rheumatologist from one of the people on that site, in case at some future date I may need to try antibiotics. The program is the Marshall Protocol. I think the guy (Trevor Marshall) is a bit full of himself, but he did figure out how to help his sarcoidosis, and his program has helped a few people with RA and other autoimmune diseases. He uses antibiotics like those in The Road Back, but he also does other stuff which may not be helpful for RA. And he and some others are trying to get some research documenting what they do.

Did you really have no change with Remicade? Since I had high liver enzymes when diagnosed, my doctor skipped over all the regular DMARDS and had me try Remicade - it definitely worked (starting after the 2nd infusion) but I had other issues, which I talked about elsewhere on this site. I'm now on Enbrel, which mostly works well for me.

You might want to give the Remicade a little more time ... (or just keep it up until you find a doctor who's willing to try antiobiotics) ... But remember, it's about 8 weeks until the Remicade wears off... in case that matters, when you're looking at how you're feeling. When the 2nd infusion wore off, I couldn't put my weight on one foot. And I hadn't felt any pain for 2 months...

Good luck! I'd love to hear if you find out what works. Keep Kineret as a possibility for some future time.

jane

5/18/09 12:11pm

I have had two remicade infusions. They were two weeks apart and then I will have one after four weeks. I have it next Tuesday. I have not had any help from any biologic yet. I know it's early for me to give up on remicade. My doctor wants me to try it for at least 3 months. It's been around 6 weeks. I will keep in mind looking for other treatments if this doesn't work. I still have Orenica to try. It's a different type of biologic so I am assuming that it will be my next med if Remicade doesn't work. The thing that worries me is that my RA is advancing throughout all these drug trials. It just keeps invading more joints.

There are only three rheumatologists in this area. I went to one and then am now 6 months into this doctor. The other doctor is in the same practice as the one I go to now. So, I really don't have options here and the visits to the doctor are so frequent that I hate to go 3 hours away to another place. I would miss so much more work. I already miss too much.

I am so glad that the remicade worked for you and that enbrel is working. I liked using enbrel because I could just do it at home. I tried it for 5 months with no help. There is also a new injectable. Who knows? I will talk to my doctor about the antibiotics. He is old school though so I doubt he will listen. Thanks for the advice. Glad you are getting some relief. What caused your liver enzymes to go up? That's not good. That is something I do worry about.

Jane

Ellen Galo

5/18/09 12:59pm

Who knows, "old school" might be more aware of it having worked for some people in the past...

My liver enzymes come down to normal most of the time, so we don't worry too much about it anymore. I still get tested every couple of months, or more often if I'm feeling like something is wrong.

Ellen

jane

5/18/09 1:44pm

Good point about old school. Can't hurt to ask right? Glad your liver enzymes are under control. Don't need that going on you too.

Brad, Health Guide

5/15/09 12:44am

I am so sorry you are going through this. I truly hope you will find the right med soon. One thing I can tell you is that you need support. A lot of these message boards are very sterile and a lot of posts and questions go unanswered. Please check out www.rheumamisfits.com You will find a ton of people that are on the same path you are on and will truly care for you. It can make a BIG difference in your life.

I hope you feel better soon.

Brad

jane

5/18/09 1:45pm

Thanks Brad. I will check out the site. Making friends with people who understand is God's gift right now. Jane

Kelly Young

5/15/09 10:00am

Hi Jane,

Wished we lived next door. Sounds like our lives have been quite paralleled the last 3 years or so.

So glad you could get that off your chest! We think we have to always be strong, but we have to let it out sometimes... we are only human. How much can one person take?

I know just what you mean about pictures: I have lots of pictures over the last 3 years in which I look like a stage 4 cancer patient and they shock me. I have been shocked in the mirror before even. I don't have the dexterity for make up and my color is really creepy looking; my shoulders and wrists won't let me do my hair very much...My muscles have lost all tone...ick.

I know I can't help, but my heart goes out to you. I just wanted to echo the others that you are not alone. I guess it doesn't look hopeful right now, but there are always more options...This is a disease in which more is being discovered even as we speak, so there is hope.

I have said the same things about the old active me and the new sitting down version of me. I have 4 teens and a 4 year old. I believe you are the same You on the inside, Jane. You will find new ways to express it. It's hard. Have you ever read any books by Joni Earickson Tada? She became a parapalegic in a diving accident, has written many books. She's an inspiration. Has a website. Maybe that could encourage you, Kelly

jane

5/18/09 1:48pm

Kelly, having teens and a four year old just makes me tired thinking about it. How do you do it? Mine are in their twenties. They still think of me as someone who can do it all but at least I don't have to take care of them any more. It does sound like we are alike. You just have way more responsibility than I do right now. Hey, I managed to fix my hair this morning. Big accomplishment! And, I am writing these posts at work during my lunch break. Thanks for your answer. It sure helps to not be alone in this. No one else gets it at all. I don't expect them to get it. But, it sure feels lonely sometimes. Jane

renie

5/15/09 8:09pm

I too have tried everything my rheumy sent my way, except the injectables. I've had severe reactions to all of it, which is why I'm so scared to try the needle (plus I really don't think I could give myself a shot), but all of it also made me feel better. So now I go to pain management and that's it. I was on prednisone for a year, and gained about 70lbs. I wish I had all the answers for you, but I don't, and neither do the doctors. If they did, we'd all be out dancing. What I have found is that some things do help.

1. Watch what you eat. Healthy foods make a body feel better. I've lost 90lbs in the last 2 years because I've realized that white flour, processed foods, and all the junk I ate not only made me fat, it made me hurt more.

2. Exercise. I know it hurts. I can't walk much anymore, but I can use a ski-like machine which I put in front of my t.v. and use for 10 to 30 minutes at a time, depending on my pain levels. Walking in water actually makes me feel almost normal for a day or so.

3. Understand, it's ok. I used to push myself to work and take care of everyone like I used to before I needed canes and pain meds. I had to learn that's it's ok to lay on the couch all weekend and watch movies and read and play on the computer. I refuse to feel guilty about it anymore. The best thing you can do when flaring is to take care of yourself and rest.

4. Check out pain management. Some days it's the only thing that gets me into the office. You may have fears of walking around stoned and drooling but the fact is that if you're in a lot of pain the meds go to the pain and not your head. They can really help you do the things that need to be done.

5. Look inward. You are the same person you used to be, but now you have a chance to look deeper and meet the person you didn't realize was there.

If there is a purpose in life at all, there must be a purpose in suffering and in dying. But no man can tell another what this purpose is. Each must find out for himself, and must accept the responsibility that his answer prescribes. If he succeeds he will continue to grow in spite of all indignities.

jane

5/18/09 1:43pm

Oh my gosh. What a great post! I enjoyed every minute. I think you are right in pain management. I have spent three years in pain just trying to endure. I will ask my doctor to refer me. It's ridiculous to hurt this much all the time while waiting for the "magic" med to work.

Thanks so much for all the great suggestions. I will read your post several times I am sure.

Thank you. Jane

Lpncd

5/20/09 2:41am

I know how you feel. I look nothing like my pictures 5 years ago. I have gained 120lbs since I have started prednisone. Without it though I am bedridden. So what choice do I have? Be fat and move around? Or normal weight and bedridden? Ill never lose all the weight I have gained I have accepted that. You just have to live day by day and pray each day gets better.

Angela53510

5/21/09 12:36pm

Just a quick comment on the prednisnone. I gained 80 lbs on prednisone. It took me a long time to realize I was craving salt, and eating pistachios, chips and every other salty, fatty food. Apparently, this is part of the mechanism of the drug. It has to do with increasing the amount of water in the cells, which is why you crave salt. At the end, when I figured out I was craving salt, I just ate it straight from my hand, and didn't have all the fat and calories from the food I was eating. I was satisfied, and stopped gaining weight.

Since I went on Kineret, I have lost 60 lbs. I was able to ride a bike, although that has stopped since I had surgery on my foot. Hopefully in the next 3 or 4 weeks, I will be able to start again, although I can see by the muscle wasting in my calf, it will be a long time before I am back to an hour every second day (my knees hurt too much to ride every day). Although I can't walk well, I do weights, and the bike really helped my appearance. I went to a diet center, which helped me lose some of the weight, but ended up night eating, so now I am just careful about what I eat. 20 lbs to go!

I really would advise Kineret - it has no side effects (except some inject site reactions initally). Prednisone just covers up symptoms, and doesn't stop damage. You need to have a biologic that works for you!

jane

5/21/09 1:58pm

Angela, Thanks so much for the salt insight. You are so right. I crave chips when I get home from work and I never ate chips in my life. I am going to try to the salt out of the hand and see how it goes. I keep hearing about kineret. I will ask my doctor about it. I have to take a remicade infusion on Tuesday so I have a list of things to ask him. That should be interesting. I truly am tired of biologics that don't work.

Thanks again for the help. Very interesting. Jane

jane

5/21/09 2:00pm

I feel for you. It's like we are completely different people. This disease sucks and when you mention to someone that you have it, you get, "Oh, I have that in my right hand". Sure you do. My brother only hears the word arthritis just like everyone else. I hope you get better soon. Thanks for your input. Jane

finally had to face it

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