Tuesday, February 23, 2010

Is It Possible To Accept It?

I talk a lot about going to the doctor but I don't talk a lot about why I need to go. I was diagnosed when I was 2 with JCA...a million years ago my arthritis didn't act like RA and they didn't quite know what "category" I fell into so it was JCA for me.

I spent most of my childhood in remission, battling flare ups here and there. I have one strong memory of having my knee drained while in elementary school and then I had a really bad flare when I was 19 that took us about 6 months to get under control.

Fast forward to '98, we're under the impression I'm dealing with PA due to family history, I start taking Enbrel, I'm miraculously cured and I lead a charmed life until I give birth to my daughter in '02...and then things quickly start to go bad.

In '08 I'm diagnosed with RA after an elbow surgery.

Now please don't misunderstand me, I'm not dying but the last 3 years have been extremely difficult. If it's not one thing it's another. I've recently had ankle fusion surgery, I wasn't 100% sold on the surgery but who could have guessed my recovery would not only include my ankle healing but also 7 weeks of IBS/colitis (the jury is still out.)

The reason I'm writing this is because my therapist continues to tell me that I spend to much time feeling sorry for myself. Which I have to say makes me want to punch her.

Her and I have struggled on this issue since day one, my question to those diagnosed is are we allowed to be sad (or feel sorry for ourselves) or be scared at what this disease does to us or takes from us?

I follow a lot of autoimmune disease blogs, in most of them I read about how everyone feels tough and resolute, how we all get up and meet the days needs...even though some days we just want to pull the covers back over our heads but I don't hear a whole lot of "shit, this stuff scares the hell out of me.."

I can't figure out if I'm just a pansy like my therapist thinks or if she just doesn't get it because she doesn't have a chronic illness...

Everyday I get up and push myself..I tell myself to make the steps I take count, to eat well and do what I need to get better...but I can't help but wonder if I'm ever going to get better.

Have you been able to accept what is going on with your body?

7 comments:

Rebecca @ Diary of a Virgin Novelist said...

I am only an armchair therapist but it seems like you need to feel sorry for yourself. Be sad! Wallow in the unfairness! I am strongly believe in the only way out is through, but going through it does not mean a stiff upper lip - it means letting it all hang out!

Living It, Loving It said...

Melissa, you live with chronic pain. Pity parties are part of the game. Of course, you have moments where are sad or feel sorry for yourself – that is part of it.

You would not be human without it. Second, are you allowed to be scared of what the disease is going to take away from you? Hell yeah! You cannot be tough all the time and you are entitled to days where you just want to be left alone. Honey, you need a new therapist and you probably do not need one at all. You get up every day because you have, and that is strength.

I am tougher than most people are but I have my own pity parties too. I lash out at my husband and yell at my kids when I am in a lot of pain or I am extremely exhausted. Sometimes, I cry for no reason at all, and go through the “Why Me” and “Haven’t I been through enough” routine. It is part of living with chronic pain. It is not easy but we do it and we do it because we have to.

Hold your chin up high and tell your therapist she has no idea. Then, go find a new therapist.

((((Hugs))))

Leslie said...

I hope I'm not one of those you only see as being resolute, because I certainly don't feel that way a majority of the time. I think you're entitled to feel what you feel, and I don't think anyone has a right to tell you otherwise.

WarmSocks said...

I wonder how your therapist views the stages of grief theory, and how it applies to your current situation.

People grieve loss, whether it's the death of a loved one or the death of the dreams of what you thought your life would be like. It's okay to grieve the loss of your health. It's a process, and sometimes it's one step forward, two steps back. Eventually it gets better, but adjusting to the new normal takes time.

Cathy said...

Melissa,
I would get a second opinion, although I know that takes so much time and energy, something that probably isn't plentiful right now. It just seems that the two of you have never connected well. I really believe that you have to connect with your practitioner for healing to happen. It doesn't mean they can't suggest things you don't like because I think we all need to be forced out of our comfort zones sometimes, but we also have to feel like our practitioner gets what is happening to us.

You have been through so much lately. Not only did you have surgery and stomach issues, plus RA symptoms, but I remember how hard you worked before Christmas getting everything ready for surgery, in addition to dealing with the holidays. Add to that a young daughter full of energy, a cat, a husband and much more. You deserve a little time to focus on yourself and I would find it alarming if you didn’t. Is that feeling sorry for ourselves? Hmmmm…..

I have been in a month long flare that has left me emotionally drained. At a recent doctor's visit I cried talking about my history with RA. The doctor seemed concerned that I was crying. Well, I was pissed. How dare she find concern in my tears? After a few days of thinking on it, I can now see where she was making sure that I was not going to be stuck in this state, but would be able to move on. (I still asked for a different doctor for my follow up visit. Why waste my time on someone that doesn't connect with me?) We have talked about how our thoughts are so important in healing and perhaps she is worried that with so much happening to you now that you may have a hard time moving to the next stage. On one hand I worry about that for myself on my worst days and other times I find tears so healing. In fact, another doctor that really "gets" me has encouraged the tears. So, I am going that route because it feels right to me. Listen to your own heart. Deep down inside you are the only person that knows what is right for you. If you feel that you need time to be angry or feel sad or disconnect from others, do it. If you feel like maybe there is something to what your therapist is saying than make the changes and ask for more guidance from her.

I personally think we are dealing with something huge here and we are going to go through stages where all we can think about is ourselves. I am in that state now. I don’t think our brain is wired to handle as many things as we ask of it and when our physical body is suffering so much I think our brain says, “Hey, you can only focus on you for now.” It won’t let us do more than that. So, focus on you. Think hard on the things that are happening outside of disease but also feel what is happening because of disease.

I have always felt that you have an open mind. You take in new ideas and think on them. I like that about you. Remember that this is only one person’s take on the situation. You are the expert on YOU.

Fishsticks and Fireflies said...

WarmSocks said what I was thinking. There is a grieving process involved with a life-altering illness, and there are stages in dealing with it. I think you have every right to feel angry and sad and sorry for yourself, and that you should do so without apology. There are always people who are going to have it worse than you, but they aren't living your life - it sucks, but take ownership of it. TAKE OWNERSHIP OF THE SUCK AND EMBRACE IT! (Did that help at all?)

Sara said...

wow. I am not in therapy anymore, but when I was, my therapist was very clear that the hour I spent with her every week was a 'safe' space. It sounds dorky, but it was true- I had permission to do whatever I needed to do, whether it was cry, feel sorry for myself, be angry, or just sit there feeling overwhelmed.
Yes, in a way, we do all have to get on with things and figure out how to function with what we've got, but that doesn't mean we don't have feelings about what is happening to us, or mourn or feel a multitude of things about what we are now dealing with- esp. if you aren't finding any relief from treatment. I would think therapy would be a place you could go and safely talk about this and let those feelings come out.
In terms of whether I've been able to accept what has changed for me, it's a tricky question. I am fortunate in that the meds I'm on are working extremely well, so I have regained a lot of what I lost initially and am not in pain all the time. Obviously, this takes a lot of maintenance, and I am not like I was before the RA, but it's easier to accept things now given that my meds are working. I can promise you, though, that if/when these meds stop working, it will be a whole other ball game, and I imagine, starting from scratch.
If I were you, I might look around for another therapist...