Hello Ms Hollyb:
I really enjoyed your post
I'm not sure if I'm just a little emotional or your letter just really hit home. I'm new at this RA game and lots of times I'm not sure what's going on myself but I'll keep reading and commenting as I learn to deal with this ...
Your letter to OUR FAMILY AND FRIENDS was right on time!
Holly, I don't think anyone could have said this better. I read it only reluctantly, afraid it might only be some kind of venting, but you did much more. You gathered up all the conflicting emotions that hit us early on as we realize our lives have changed - some may not change as far or as hard as yours has, but even so, those same emotions, ffears, concerns, are there pulling down the road we didn't choose for ourselves (or our families).
Thank you -not all of us are as good at putting this into words - I'm much better dealing with the medical details and alternatives and nonverbally gearing up - but have always struggled with the verbal part.
I understand how you are feeling. Why me?? I have wondered over and over again. My mom is also a sufferer,so I know why really 
The hardest group to explain it to are my friends and co-workers, so I don't. The pain that no one understands because, in reality, we look like everyone else. It is such a strange disease! I am currently 32 weeks pregnant and am fighting the pain for my little one each day, but it is difficult! I want to breast feed and not worry about medications, but I will not be able to care for my baby without meds. Good luck to you and your RA journey. I wish you the best for a life lived to the best of your ability. And please search for a wonderful, knowledgeable doctor and medicine that works for you, so you can live your life with miminal pain!
Hi, I have come back to this website as I recently stumbled upon something that helps RA greatly. I recommend you google Low Dose Naltrexone (LDN). There are several websites and yahoo groups. I found a comment about it on the Daily Mail Health section and have not looked back since.
This drug has been used in large doses for drug addicts since 1984 an American doctor, Dr Bihari, found that this drug in minute doses helped MS sufferers and then other autoimmune diseases. It works on the endorphins and is non-toxic in large doses. Trouble is that because this drug is out of patent and therefore NO money can be made from doing clinical trials for use on other diseases, it won't happen unless the NHS funds trials. A petition, handed in by Dr Chris Steele, has asked for funding to be made available as this drug will save money as it is less than £1 per day.
A friend's father has MS and he has been prescribed it by his local hospital who told him that others are benefitting from this drug.
Visit www.ldnnow.co.uk and http://www.lowdosenaltrexone.org/
I cannot bear to think that young mothers are suffering as my daughter has. She is going to ask for this drug when she goes to hospital next, taking with her the LDN fact book!
To Fight RA means to not let it beat you down, you have to beat it down, push it back, and never let it get you down. Now that sounds like a hard and almost impossible task since you are fighting something that is genetically embedded within you. I have been fighting RA for 20 years and although some days it wins and I might need help to get to the toilet or take a bath, I fight every second to do and accomplish all my dreams, and daily activities, but I'm not going to lay down and die, I will not allow the RA to stop me from getting myself to the toilet. I use the toilet scanario because it's the most intimate of personal duties and is mandatory to keep me motivated....you don't want to pee on yourself! No matter how hard the RA is kicking your A** , Kick Back, don't sit down and take the beating! FIGHT! Although I am not Holly I know of the Fight she speaks of. I hope this will help you! Sincerly, Becky Sue
P.L.U.R.- Peace, Love, Unity, Respect
It is understandable when you are fighting for RA stability to be focused on yourself and what you need from others. What an enormous shock to the system, but literally and metaphorically. I remember when my spouse was diagnosed. Brutal.
When you are stabilized -- hopefully, you will be stabilized -- please take a look at Maggie Strong's astonishing book MAINSTAY, a book for the well spouses of those with chronic illnesses. Also consider, if you are in a relationship, getting yourself and your partner to couples therapy sooner rather than later. There are big time psychological issues for both the ill spouse and the well spouse, and the sooner those issues are addressed, the more likely it is that your relationship can survive and even thrive.
There are some fine psychotherapists listed at the "professionals" section of www.wellspouse.org, and some of them even work by phone or Skype.
I cried....This is me.....You wrote just what I need to give to my family and friends. Thanks so much, I have many people that I have never told because I don't think I could hold myself together.
I understand completely! Six years later and I still get emotional and cry everytime I talk to someone about it. And when I read my blogs to my family I literally bawl. I think it's normal to experience such strong emotions. So I definitely understand when you say you never told because you didn't think you could hold it together, because I still can't after all this time. For years my family didn't know just how bad I was with the pain and taking medications because I never told them and I learned to smile through the pain. When I started to talk to the family they began to understand what I truly go through on a daily basis. Now I get the support from my family that I never thought I needed, but desperately do. In my blog I wrote all the things I wished I had told my family sooner. I hope this helps you and if you ever need someone to talk to, we are all here for you! Good luck and best wishes!
Holly
Thanks so much for the kind words. I was with my friends this morning for coffee and again did not bring my RA up in conversation. I always smile and say I'm fine. I know they would understand but I would totally fall apart. I see them so rarely that I wanted it to be a happy get-together. I think I might type up a letter and send it to all of them. I'm going to use your letter as a guide. I want them to know but I can't bring myself to tell them face to face. My eyes fill up with tears just talking about it. May I ask what you are on for medications? I have been on Methotrexate for about a year and weekly Enbrel injections for about 5 months. It seems to be helping.
Holly
I wish I had this letter ten years back when I was first diagnosed withRA. It was a painful journey both for me and my family until and unless we have learned to accommodate each other's demand.
This letter could have made the task of making my loving family understand my feelings so easily.
Ratnapriya
Holly! wow! This was exactly how I felt when I was DX almost 2 yrs ago. I've been lucky and have been virtually pain free since Oct 08. *knock on wood*. I remember being sooo angry at my husband because of his insensitive comment about how I was "milkin' it". If it hadn't been so painful (to me), I probably would have hit him with a baseball bat, then ask him how it feels to "milk it". I remember being terrified at driving thinking that if I had to slam on the brakes, I would probably pass out from the pain in my hips of moving my leg that quickly..How I wish I had this letter back then. Even now, it's like the elephant in the room. No one asks anymore how I'm feeling, no one mentions it. I'm back to my normal self doing the things I did before, but I fear that flare is lurking in the shadows to rear its ugly head on me. But, should that happen, I'm going to remind my family again (and this time be strong about it) with this letter. Thank you Holly. It's refreshing to see it. ~Des
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Thank you for sharing - yes, I wish I'd have had these words, this letter, to share with my family and friends when I was diagnoised with RA some four years ago. My family still struggles to understand for outwardly I appear and sound "just fine." It is when I move, or grow quiet, or am suddenly exhausted in the middle of the morning, that they especially grow confused because I look and sound ok. Then, too, they don't understand that RA, in it's wickedness, can wax and wane in the pain. I can be semi-okay for months, then get hit with a severe flare-up that can last days, or weeks, or months.
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