Status update: ...is having a day.

Wow, u describe where I am; have been for weeks now! It is sooo great to discover a site where people who suffer from this dis-ease as I do, really talk about how it affects your life. I was hunting on the net for a site where I can openly discuss my feelings about how challenging it is to live with RA. I don't really tell my friends; I don't want them to feel obligated to try to take care of me. There is nothing really that they can do except offer words of support and encouragement. Don't get me wrong, it is good to have friends who care about me and how I am feeling, but sometimes I need to be able to say how bad this suck without having to worry about them worrying about me:)

After days of battling with my body over who is in control, me or this dis-ease, I just want to SCREAM how unfair this all seems. Here you are going thru your life feeling on top of the world and WHAM, you are on your ass, feeling like a mack truck just hit you. It takes days, weeks sometimes to get back in balance and when you do, the cycle starts all over again.....

I am thankful for the good days. Unfortunately, there seems to be more bad days than good lately. I pray that the cycle will change; I know it will, because there is nothing constant in life but change. It is good to know now that there is somewhere I can go to say how I feel to others who understand my frustrations and my pain and where I can update my true status:) 

Thanks, I needed a boost after a terrible day at work yesterday ... !

I think we have to be come our own 'heroes', not to get a swelled head, but to take note of what we can accomplish ( or just get through ) on those bad days, without going all to hell... (and sometimes that will happen, anyway).  RESPECT OURSELVES!!

   I had cut back on meds the last couple weeks, because the side effects were getting to me - but I reached my limit during the last two days (I cried a lot yesterday which is not typical of me) when I just stopped thinking clearly due to pain . . . i.e., when the pain of the disease exceeds the pain of the side effects, it's time to turn the tide back the other way and take my chances.  I get so tired of the 'balance battle' (you're hearing my discouragement at the moment, but that's not the end of the story). 

   I realized last night and this morning, that there are times when I have to just look past the pain of the moment, not let it destroy my native optimism, because I WILL feel better, and not let it discourage my husband who is SO helpful.  He keeps me going, and so I need to give him the gift of letting him know HOW helpful that is, that my pain is not his fault.

   So - I'm seesawing back to the side of "Let's take all the medicine I reasonably can that will help me get through this time" - until I get the signal from my body or others to make yet another adjustment...

I agree with you, the fact that we can put one foot in front of the other on the bad days indeed makes us heroes...I know for me the small victories are what allow me to get back to the balance space. I think sometimes that getting up every morning and living with the effects of this disease makes me a hero. Living a somewhat "normal" life does too. (whatever that is:)

I understand what you mean about balancing "existing" somewhere between complying with the medication requirements and the side effects of the taking all those medications. I've been struggling in the same place; I've been on weekly Humira injections for about a year. Was working pretty well. Protocol says injections should be weekly; new Rheumatologists wanted me to stop the weekly injections and I did. Now I am back to being stiff as hell all day. Doc says that continuing weekly injections will increase the possibility of cancer. Why should I have to choose between functioning or cancer? Hell of a choice huh? Good thing I am unemployed now, cause who could work hardly being able to stand or walk.

Now I probably need to go back on weekly Humira injections, prednisone, metho, and two pain meds. That cocktail seemed to work best for me, but I was concerned about dependence on the pain meds to get thru the day. Hard to talk about having to make  these choices with folks who do not have RA; they usually don't understand how RA differs from most other types of arthritis. They think I should be able to pop two Tylenols and call it done. I wish:) 

I really appreciate having an opportunity to be heard without having to filter or explain how I really feel. Most times when I talk to my friends, I try not to bum them out with my story. I don't want to be that person who only talks about the bad things going on in their lives. You know that person, the one you avoid because whenever you talk to them, they have a list of issues and pains to tell you about.:)

You at least have someone in your life who cares for you, literally and figuratively. Dealing with this dis-ease is a challenge, no matter whether you are alone or in a relationship. From where I sit today anyway, together has got to be better. Take good care of yourself, and I hope that today is a good day.       

Just curious, do you have cancer in your past? I have not heard of going off a biologic after a year, just because of the time ...  but maybe it's just a reality check?  My doctor, who is always saying the RA will come roaring back, suggested at my last appointment that I try backing off gradually.  I was like, "I don't think I can do that ..."  At the end of the summer, since I was having so much pain , even with Enbrel, but a different kind, thought maybe I should. SO I did - briefly - and after about 2 1/2 weeks went nuts - back on - but now the muscle pain is increasing.  However, at least I feel sane - rhymes with PAIN!

I hope you are able to get stable in some way again - to be able to live and breathe and move a little more comfortably, and find some enjoyment ...

Kinda...brush with it in my early 20's. Several bad pap smears...lead to a rather nasty conclusion. Lumps in girls, which are constantly monitored. also family history, so I know I am predisposed to the risk.

 I would imagine that if I came off the biologic there would be hell to pay. Just cutting back from weekly to every other week (recommended dose) has had ugly consequences for me. Doc increased the metho today...hopefully the rest of my hair will not fall out:) He is against my weekly injections because of the cancer risk. I just want to get back to the balance place so I can function.

Need to go back to work so I can have health coverage so I can stay on biologic. COBRA coverage is expensive...only able to keep it because of the subsidy, which for me will end in December. Not being on the biologic scares me....life before really sucked! I believe that there is a master plan at work here. I am a very spiritual person and when I get sucked into the dark place, I just have to pray my way out of it. I'll pray for u too. I thank you for your support, and I support you too. Somehow, someway, we will

b o.k.......