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DEDICATED2HIM's Photo DEDICATED2HIM Posts: 3,452
5/27/12 1:57 A

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hi Jill,
I apologize for not seeing you right away. I've been in the hospital with yet another infection gotten as a result of the immunosuppresant action of the biologics. This time it was endocarditis, an infection of the valves in the heart.

My greatest sympathies to you. I don't really know what to suggest in terms of your insurance issues. One thing I can suggest is that if you are unable to continue working, you can look into applying for Social Security Disability....although I believe you must have been unemployed for a certain amount of time before becoming qualified for it. Also it takes a very long time to get approved and usually EVERYONE gets rejected at the first application. There are many SS lawyers who specialize in getting people approved...and they do not take any money up front but will take some of your lump sum you get at the beginnign because your payments will be retroactive from the first day you applied. (I"m assuming in all of this, that you are a USA resident.)

I totally understand your frustration. I had lost 70 pounds two years ago, myfirst year at Spark. Then I had three hip replacement surgeries and was laid up, unable to exercise. Slowly the weight crept up. Then because I have severe asthma I was put on strong doses of IV steroids which threw on an extra 30 pounds....and now I'm right back where I started.
And because my physical condition is rapidly deteriorating, exercise is and maybe always will be out of the question.

Still I'm working on getting the weight off without exercise. Certainly a bigger challenge.

If you want to vent, scream, laugh or get to know us, Please visit the daily chatter thread.
Welcome to the team
I am one of the co-leaders.

It's great to meet you, I hope we can help get you through some of the trauma of diagnosis and help point you toward resources that will be helpful.

Blessings,
Cynthia



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JILLBRYA's Photo JILLBRYA Posts: 106
5/15/12 11:28 P

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Thank you all of you for all the helpful information. I am a mess over here. My dr. wants me to see a rheumatologist, but unfortuantely my work cancelled our health insurance due to the "economy"! I've tried getting help from the state but no such luck I make too much money, but not enough to actually get health insurance on my own. On top of it, work has been off and on because of all the pain. So as of right now I am stuck in limbo.

I never thought of setting the exercise tracker to zero. That is a great idea and im gonna try it. Once again you guys are awesome and thank you very much for your advice! Hoping everyone stays healthy and pain free! emoticon

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_LINDA's Photo _LINDA SparkPoints: (164,273)
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5/12/12 9:23 A

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emoticon Jill!
So very sorry about your diagnosis :(( I will say welcome to Hell. I have had this disease since age 6.5 (I will be 50 soon), have had some 30 surgeries and 5 joint replacements. When my disease started, there weren't any wonder drugs out there like there is today. As the others have said early, agressive treatment is essential. The biologics have been life savers to newly diagnosed people. They have the capability of sending the disease into remission quickly rather then waiting for the standard treatments of methotrexate, plaquenil and sulfa drugs to take effect (can be six months before you notice a difference on those).
Physiotherapy is also a very important component of your care. It was a physiotherapist who kept me out of a wheelchair when I had my worst whole body flare and couldn't even get out of bed..
Water exercises are by far the best for people with RA. The water is gentle and supportive on painful joints. A nice soak in the hot tub after does wonders for tense muscles due to pain.
Congratualtions on your weight loss -that is amazing! Well done! Hold that thought that you did it once and can do it again. During my surgeries when I was unable to exercise, I set my Fitness Tracker to 0 and made sure I stayed in the calorie range the Nutrition Tracker gave me as a result during my recovery -it works! I did not regain a single pound as I have done in the past after exercise lay offs. I went through three surgeries last year and finished with the same weight I went in. Its been a monumental struggle and your best defense is eating healthy consistently when your body won't cooperate for exercise. I eat plenty of fresh fruit and veggies which are low calorie yet fill me up. My Dr.'s have been in awe how good my bloodwork is (as RA can cause anemia which I had once) and my overall health -I simply never get sick -no colds or flu. I have not had a single infection from any of my surgeries.
This team is the best and I am glad you found us. You will get your Spark back on -your quality of life depends on it.

Never Give Up! When one door closes, I simply kick down another one!!
Stand Tall, Walk Proud-Dani W, Fitness Instructor
You CAN do it!


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TMANNY's Photo TMANNY Posts: 667
5/11/12 12:21 A

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Unfortunately not many doctors will use ultrasound :( so I would not limit yourself to finding one that will there are many good Drs out there but even my good Dr doesn't use ultrasound. I wish it were more widely used it is probably the best tool there is for us but it is expensive and a newer concepts so most insurance companies are also saying no which makes the Dr not want to use it also.
Just make sure to find a Dr that believes in early aggressive treatments those are our best defense.

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JUDITHWITHROW's Photo JUDITHWITHROW Posts: 1,119
5/10/12 11:24 P

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I was diagnosed 10 months ago and the people on this team have been a God send. I understand you feeling like a victim. It's just plain unfair. Hang in there. Remember your fight against RA is not a sprint. It is a marathan. They all tell me the first year is the worst.

My advice is to find the best doctor possible. All the treatments are slow acting. It is just the nature of how the drugs work. A cutting edge teaching hospital will be up to date on the latest treatments. I stuck with my local rheumatologist too long. I have my first appointment with Johns Hopkins Monday. It is only an hour away from me but clinics like this accept patients from all over the world then refer them to docs closer to their homes after evaluation and treatment has started so don't feel stuck if you feel there is not a cutting edge specialist in your area.

Make sure your pain is addressed. My rheumy has not treated my pain because he uses it to gauge if my treatment is working or not since disease activity does not show up in my bloodwork. Since my treatments have not been effective, pain has caused inactivity which has lead to extreme weakness. I saw the ortho who treats my neck and he was frustrated with this approach. He wishes I had contacted him. He believes pain needs to be treated so I can remain active.

I have learned my rheumy should have been using ultrasound to measure my inflammation. The best docs will use this tool.

Invest in anything that makes your life easier. No one "tool" will work all the time. After months of using a rolling walker, I regained enough strength not to need it for walking but it is a great tool for carrying things. It also provides me a place to sit.

I made a wish list of things I wanted. You can see it on my blog.

Make eating healthy and staying active a priority. Easier said than done but worth it.

Stay as independent as possible. Online grocery shopping and home delivery have been worth the extra money.

Ask lots of questions and reach out to this group.





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JILLBRYA's Photo JILLBRYA Posts: 106
5/9/12 6:43 P

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Thank you everyone for the great advice. I am definitly going to check out the websites that were posted. I do not have a rheumatologist yet. Dr. is referring me to one. I did the prednisolone and I am pretty positive I don't want it again. It made me feel really swollen and it didn't really help with my pain. Still trying to lose the weight in my stomach from it. Im glad I found this Team, maybe this is what I need to get re-motivated! Thank you guys!! emoticon

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BKWERM's Photo BKWERM SparkPoints: (88,429)
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5/9/12 6:05 A

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emoticon to the team! I agree. RA sucks! I went into a major depression when I got it. Originally, I got it in my knees. I had lost 60 pounds so far and had taken up running and then my knees were sore all the time so I thought it was because of the running. Well, it wasn't. I went from being able to run to barely being able to walk in less than a month. It took two months to see a rheumatologist (I hope you have one or are getting one) but once I got in to see him, he started me on an aggressive medication regimen (methotrexate, sulfasalazine and plaquenil). I was also on Prednisone in massive doses at first and even though it's not a great drug to take in massive doses, it took away most of my inflammation and most of my pain and for that, I am very thankful.

Once your RA is under control by medications, it will be easier to focus on exercise. It's really hard to think about exercise when you're in constant pain. In the meantime, set your fitness goals to a low weekly goal and your nutrition needs will adjust.

Browse around the team. Check out different threads. There's a lot of good information here and talk to other team members. We've all been where you are now so we all know how you feel.

Take care.
emoticon

Joanna from Dundas, Ontario
BLC20-25 - Amber Amazon Warriors
Eastern Daylight Time (EDT)

Co-Leader of Living With Rheumatoid Autoimmune Disease (RAD)


Happy and healthy people have a better chance to live with confidence and contribute value to the world than anyone else. Don't take that for granted. ~ James Clear ~


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KIMMYWIZZIE1's Photo KIMMYWIZZIE1 Posts: 1,038
5/9/12 4:06 A

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I agree RA Warrior has great info for someone newly diagnosed. Don't give up on exercise. I know it's frustrating. Once your doctor gets your flares under control, you'll be able to exercise again hopefully.

This is a very understanding group. (((HUGS)) and I hope you get some relief soon!

~~Kim/Kimmy~~

Don't let the fear of the time it will take to accomplish something stand in the way of your doing it. The time will pass anyway; we might just as well put that passing time to the best possible use. ~Earl Nightingale

Never, Never, NEVER, give up!


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TMANNY's Photo TMANNY Posts: 667
5/9/12 12:08 A

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First off great job on the weight loss!!! That is fantastic! I am sorry about the diagnoses. It is a lot harder to exercise when your whole body hurts. I got some exercise ideas from my physical therapist. All of us with RA have different joints that are effected etc...if your Dr refers you to a physical therapist I would ask them what you can be doing exercise wise. There are chair exercises etc that are more gentle for us. Water exercise is always easier on the joints, I seem to spend to much time swimming etc so remember to limit your time (I feel so good in the pool I forget that to much will still hurt later) I hope this helps you some. If you ever have any questions don't be afraid to ask. This is a great group. I also like to recommend rawarrior.com, and IAAM (international autoimmune arthritis movement) to any newbies they have a lot of information especially RAwarrior

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JILLBRYA's Photo JILLBRYA Posts: 106
5/8/12 10:58 P

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Hello everyone, I am new to this team but not new to Spark. I started spark with super enthusiasm and went from 204lbs to 150lbs in 6 or 7 months. I have never felt so good. I woke up one day with a little shoulder and back pain and figured it'd go away. Within a month the pain was so terrible I was unable to even lay down on my back. I think I went two months with just an hour or two of sleep a night. I went from hospital to hospital trying to see what was wrong. Everyone pointing at numerous herniated discs in my back but telling me it wasn't bad enough for surgery. Finally I saw my Mom's dr. who happens to specialize in geriatrics. He took one look at my Mri and said you have severe arthritis, lets test you for RA. Well here I am. After months of pain, and living on pain meds which happen to make me extremely nauseous if I don't eat and not being able to exercise like I was I am back up to 157lbs-163lbs it fluctuates. I was trying to reach 140lbs. I am angry as heck, that after all that hard work im moving backwards and no clue what kind of exercises will work for me now. On top of it my motivation has dropped to an all time low. I know I am almost ranting and im hoping someone can maybe relate. If anyone has any tips or advice for a new RA victim and I say victim because lately I guess that's how I feel. It would be so much appreciated... :(

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