Thursday, May 31, 2012

You can do it! Don't give in to RA...

By KrazyKat Wednesday, July 01, 2009

A recent post really jumped out at me because in it I saw myself and the struggle I had experienced when first navigating through this chronic disease (RA) we all or perhaps those we love struggle with on a minute by minute basis. What I've posted here is my attempt to reach out to Sarah.  Another forum member, Ellen, reached out to me and encouraged me to create a SharePost (my first).  So thanks to Ellen, here it is:

 

Hi Sarah: When I read your post I thought, "Oh I know just how she feels.  It could be my post."  I too have been dealing with RA for about 5 years now, the first 2 years un/misdiagnosed -- you know, "it was all in my head."  When I finally got correctly diagnosed I thought thank God now things will be better.  Nothing could have been further from the truth.  I had so many bad days, bad flares, days I just wanted to give up, but I didn't.  I still have some bad times and if I hear one more person comment, "I have arthritis too" when they have no idea what they are talking about, I think I am going to scream out loud!  ARRRGH  But here are some things that have got me thru:

 

First, find a supportive, compassionate rheumatologist who will work with you and listen to you.  If you already have one, great!  If not, leave the one you are with and find one who will commit to you and not give up on you.  Ask friends, colleagues, contact the Arthritis Foundation.  I live in central NJ and see a wonderful rheumy in Willow Grove, PA so if you're in my area let me know and I'm more than happy to share his name/number.  This is so so important I cannot stress it enough.  I made the mistake of seeing a rheumy who would not treat me until all the "signs" of RA were present (I was sero-negative in one test so she waivered).  Big mistake on my part because I suffered much damage during that 1 1/2 year period because of not being treated.

 

Second, find a support group.  It may or may not be your family members.  It took my husband a long time to come onboard with my illness.  I think he just didn't want to believe it -- didn't want to believe I was chronically ill and that we needed to find a new normal.  Again, reach out to the Arthritis Foundation.  Don't be afraid to talk to people about your illness -- it is nothing to be ashamed of.  You didn't choose it, it chose you.  You are still the same wonderful, beautiful, strong, talented woman you were before.  I can understand if you don't want to talk about it at work so you decide what's best.  It took me a long long time to discuss it with my supervisor and ask for his help so that I could stay a productive member of his team.  Also, talk to your primary doctor, especially if your feelings of depression don't lift.  You may need to be on a low dose antidepressant for a while -- no biggie. 

 

Third, get up and move.  I found out that laying around was my biggest enemy.  So now, even after double knee surgery, I get out and walk around as much as possible.  Join an arthritis exercise group at your local Y or health spa.  Get a massage, try Tai Chi, swim, try acupuncture, experiment with different things.  It will give you hope but don't crash if some of it doesn't work -- just keep at it.  Don't give in to this damn disease.  You will find something that works, trust me.

7/ 2/09 10:07pm

Very nicely put Krazy! Cool

7/ 3/09 10:14am

Thanks Kelly.  Hope you have a Happy 4th!

Lene Andersen, Health Guide
7/ 3/09 12:32pm

Thank you so much for posting - what you said was beautiful and so right.

7/ 3/09 6:55pm

Thanks Lene -- that means a lot to me coming from you.  I am an avid reader of your shareposts and have learned so much from you.  Thank you again and have a happy and safe 4th of July!

Anonymous
Anonymous
7/ 8/09 7:24am

I really enjoyed it since it reflects my feelings. I am a scientist who was diagnosed with RA 6 years back. The diagnosis came after three years when the damages were already extensive. My disabilities are also quite extended but not visible by others since they only see me walking with a bad limp and very slowly. But like you I told myself I will never give up. I read up everything available online. I am on combo RA meds which I take regularly. A regular yoga and free hand exercise regime keeps me mobile so that I do not get knocked out after I take Ph.D course work classes for straight one hour constantly on my feet. I promised myself never to wallow in my grief since there are so much more suffering for others. Of course having a supportive husband helps a lot, who keeps telling me I am almost normal (not true at all) and urges me to do things beyond my limits.

Members of my research group does not mind at all if I take five minutes to walk from one lab to another, neither my collegues mind when they have to pick up things from the floor for me. They say they appreciate the smiling face I put forward despite my pain. So do smile and tell your RA that it will not ever take you over.

7/ 8/09 9:25pm
Thanks for sharing your story. I too am blessed to have a wonderful husband who says I'm still the beautiful girl he married -- and this on my ugliest days! And colleagues who help me without being condescending. Best wishes with your doctoral studies. I was diagnosed in the middle of my grad studies and though I entertained thoughts of my own doctorate, I made a tough decision to take a step back after graduating, at least for now. You are an inspiration not just to others with RA but everyone who knows you! And like you said, do whatever it takes to just keep putting one foot in front of the other and maintaining the lifestyle you enjoy for as long as you can! Like was said in the day, "Keep on truckin'!"
Anonymous
HighonLife
7/27/09 7:57pm
I read your post and can relate somewhat. I was diagnosed as having RA approximately 1 month ago. My labs came back high, and I have been having alot of joint pain and stiffness. The problem I am having is getting the Dr's to listen to me objectively instead of to the disease itself. I have a couple of issues going on at the same time. Had ACL reconstruction on my rt knee a year ago and have been dealing with pain and swelling off and on for a year (surgery was in July 08) fractured my radius and dislocated my elbow 2 days before Thanksgiving 08. Started having autoimmune symptoms 6-8 months after ACL repair and mentioned this to my Dr. He ordered tests and boom - Rheumatoid arthritis. I was started on Plaquenil 200mg bid. And to tell you the truth it's all I can do to put that pill in my mouth and swallow it. I had a bone scan approximately a week after being diagnosed with RA. I really was hoping for an objective opinion and unfortunately everything was related to the fact I had a prior Hx of RA. I don't think your a person when you go for tests - you are nothing but a disease. So I am going to taper off the plaquenil - stop it and cancel my appt with the Rheumatologist. I know I wiil not take anymore medications for this as I am no better or worse than a month ago other than I am poorer from all the co-pays. I know it takes a while for the drugs to take effect, but I have decided that I WILL LIVE OUT THE REST OF MY LIFE DRUG FREE. Don't like the side effects, don't like all the labs, don't like the long-term effects. I'd rather deal with the pain and stiffness which as you know can become unbearable at times. Anyway thanks for letting me vent, and as they say - LIFE GOES ON! HighonLife
7/28/09 11:31pm

Hi Highonlife: Thanks for commenting and venting -- I believe it is so important to vent and that is one of the many reasons I love this site -- if you're down or sad or in pain or just frustrated and in need of blowing off steam there is always someone here who understands at an intimate level what you are going through.  I understand your bitterness -- I travel through it many times on any given day.  It could be a friend, colleague, family member or most disheartening, a doctor, who fails to grasp the difficulty of going through chronic illness and all its baggage.  I'm sorry your current rheumy is so unsympathetic and impersonal.  I guess its difficult for others to fully grasp how this disease can make you feel both physically and emotionally.  I still advise you to find a gifted, compassionate rheumy -- they are out there.  It does take a lot of persistence and perseverance and sometimes with pain, fatigue and energy levels lagging it can seem like too much but it is so very important.

 

There are a lot of side effects from the meds but for me the decision was do I want to live perhaps a longer life in agony or do I want to live as good a life as possible now.  For me the answer was the latter.  I'm so sorry you have been experiencing so many health issues in such quick succession -- this alone can be devastating. Perhaps you just need to take a break and get heart and mind replenished and renewed.  I pray you will find healing and that your spirit is re-energized so that you can reconsider future plans.  I do believe that there is a window of time in which we can decide to fight back by taking meds  to minimize long term damage or we can just give up and give in.  For me for now I choose to fight back -- maybe I'm just a stubborn cuss...lol.  Take care and don't close the door yet on the meds -- new ones are coming out every day.  Take care and write again anytime you need to vent. 

Anonymous
HighonLife
8/ 1/09 1:06am

Thanks for taking the time to reply.  I have decided to take a break.  I have seen alot of Dr's, had numerous tests, I am adapting to the fact I may be on medication the rest of my life and am still fuming over the whole situation.  I have given up so much over the past year do to this illness and the other setbacks I have had.  Anyway I did feel better after venting.  I can see that my family and friends are getting tired of me talking about my health problems.  They kind of stare in space now.  Like I said Life goes on.  I am doing alittle research myself.  I will always take an active part in my treatment or non treatment.  Hopefully I will make the right choices.  I don't like Dr's and I don't like meds,  and will try everything in my power to avoid both.  Anyway best of luck and I hope you live a long and active life.

8/ 1/09 2:08am

Thanks for your well wishes.  I hope the same for you.  Keep in touch Smile

Anonymous
Anonymous
8/13/09 8:07pm

I'm with you! I haven't been diagnosed yet, but I have all the symtoms of RA. My mother has had RA and has been on every drug out there. She has gained 60 lbs over the years, now has diabetes, and now has cirrosis of the liver (from the meds). She still has all the pain from RA and now will need a liver transplant (which she is not considered a good candidate because of the other issues). So yeah there is medicine you can take, but the question is what's worse the side effects or the pain that eventually comes back anyway. I am trying supplements, which include Osteobiflex, fish oil, and 5000 IU of vitamin d. I walk 1 mile minimum every day, or 2 miles if I'm having a good day. I drink 1 bottle of Elations (joint juice from Walmart) and lots of V8 juice daily. So far I have stiffness every morning yet, but the pain in my joints has diminished. So, am I fooling myself with these supplements? One thing for sure if the RA doesn't kill you , the side effects from the medicine sure will!

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By KrazyKat— Last Modified: 12/07/10, First Published: 07/01/09