Saturday, May 8, 2010

What's the Deal???

I've been avoiding posting because I'm so sick of whining.  Ugh.  I feel like that's all I do anymore.  I hate it.

I went to the rheumy on Monday.  I had a noon appointment, but didn't get in until 3:30.  Oh well....this doctor is worth it.  At the time, I had had about 3 good days.  When I say good, it means the pain was probably about a 4 most of the day and I didn't need to take a pain pill at all.    He upped my dose of alzulfidine to SIX a day (gag) and he did a chest x-ray.  I had been having some pretty bad chest pain in the upper left part of my chest.  He listened to my lungs and they were clear, so we'll see what the xray shows.  (I will call for those results Monday)

Telling the doctor I was doing better must've jinxed me because the past few days have been HORRIBLE!!!  The pain in my knees is so bad and I'm stiff all day long.  I walk super slowly and I feel miserable.  I don't know what happened as the weather has been nice and I've been taking my meds.  All I know is it really sucks. 

I know my husband is so sick of me.  He doesn't even ask how I'm feeling anymore.  He has even mentioned that I might be using the pain as an excuse not to go out.  I would LOVE to feel well enough to go out!  I really hate being at home all the time.

Unfortunately that's my update.  I'm trying to stay positive.  I'm trying to be happy.  But I'm not.  I'm depressed and down and really worried that I'm never going to be pain-free again. 


  1. If he is unwilling to accept you have a chronic condition, he needs to 1. start attending your rheum appointments with you and 2. get counseling on how to cope.

    Mine was like yours at the beginning too. I can say now I have more good days than bad, as long as I AM CAREFUL OF WHAT I DO and don't over do anything. Rest between exercise and rest between chores. It's the only way.

  2. Just found your blog and want to say I sympathize and empathize! Chronic pain is no fun and especially with a family and work to keep up with.

    Has your rheumy considered ehlers-danlos? I had been to three docs before one diagnosed that (on top of arthritis and fibro that had been diagnosed several years prior).

    Hang in there -- it's hard, I know. Try to convince the hubby to learn about chronic pain. Honestly? It would do you both good to seek some professional advice on coping with the lifestyle changes that are brought on by chronic pain.

    Keep blogging -- it helps to write it out and keep a log of what you do that makes it worse.

  3. This just proves that even our rheumatologists don't understand us. There are many days that I could not sit for 3 1/2 hours sitting in an uncomfortable waiting room chair. Sorry you're in pain.

    My wife used to accuse me of the same thing with my RA. She mentioned this to a family friend who also has RA. She really let my wife have it and explained how unpredictable the pain can be and how overwhelming the fatigue is. I would gladly go shopping with her every week (even for shoes) if I could just have my old life back! Perhaps if your husband could talk to your rheumatologist or an actual patient, he would be more understanding.

  4. {{{HUGS}}} Living with an illness as mysterious as some are can be taxing on anyone. Is there any chance he is exerting typical male behaviour and is not close in fear of? Stay vigilant in your seeking information and be true to yourself. Never do more than you are able. thanks for having me. Tazzy