I'm in a weird place today (emotionally). Not entirely sure why. I can be really good at denial and don't have a problem with burying my head in the sand for awhile. I battled congestive heart failure for years and feel like I've made it to a point of "safety" with that disease right now (based upon not being in the hospital for over a year). I never really felt like the literature/statistics about CHF applied to me. I was always the one who would fully recover, etc. I tend to be an optimist :) As my RA has been giving me trouble lately and the time has come to move on to more meds (methotrexate is not cutting it), I've turned my attention to researching RA treatment (thus coming back to this board). I've done a pretty good job of convincing myself (depending on my mood )that I
1) don't have RA or 2) have a temporary form of RA or 3) my current form of RA is as bad as it will ever get and I'll soon be cured
Ok. Reality check time. I am digging my head out of the sand long enough to research my options. Anyone else go back and forth betwen realizing severity and living in a state of semi-denial? The only thing that keeps bringing me OUT of denial is the pain and fatigue. But of course those will be gone tomorrow :)
Julia - I am just coming up on my one-year anniversary of being diagnosed by four different rheumatologists with four different variations of autoimmune arthritis disease of some sort, and am doing well on the drugs I have been given or had to beg or demand to be put on, and still know deep down that I am quickly succumbing to "it", whatever my "it" is. I plan on taking it one day at a time, glad that I am still upright, and hope for the best. Hang in there, we are all pulling for you. Cathydear julia, with what you have been through ( heart failure), this all must be wearing you down. I posted on your other 'topic' , so not to repeat myself I'll just say, 'I do so understand how un-nerving' finding out you have still another serious medical problem can be. ( I couldn't believe I had a heart murmur....that it was a mitral valve prolapse that required immediate surgery (Dec), and that the operation would throw my RA into the biggest most awful 'flare' you could imagine.) Talk about denial! It has been 3 months of hell after the operation in Dec, and the 3 months until now, pain free! thank goodness, with much stress about 'waiting' out the remicade , mtx, and then finding out I NEEDED to get OFF the prednisone (which was such a help to me!) I'm almost off of it, but my hands are stiff and because I am an artist it is scary having my hands not respond. I also like to play golf with my husband, so I need to have energy and feel well! All so tough with this disease.
Chin up everyone says and be patient (for me with remicade, etc). I think it is working, but you never know for sure with this STUFF. I have a wonderful doctor who has worked hard to help me.
me
I was in denial for the past year. I have been feeling great on just Remicade (some of my joint pain is osteo so I don't count that). I thought I may have had reactive arthritis and whatever it was that gave me the symptoms was gone. I couldn't find anyone else that has been feeling well on just Remicade, so that convinced me even more. Then two weeks ago the pain and stiffness returned. The last straw, that sent me asking for relief, was when I could barely lift my head off my pillow. So now I am dealing with a black cloud over my head. It's almost like just getting diagnosed. I really thought I could keep going the way things were, and now reality is setting in. It has only been a year since I have been dx'd but we are already looking at moving. I just can't take care of this big house and yard. We are looking at building one with a "universal design" or "aging in place". I am only 46 but I certainly have aged and those rails along the tub are looking pretty good to me.
Hi Julia,
I was just diagnosed in March.
I do not have RA, the doctor made a mistake, I will be part of the small percentage that have a spontaneous remission, this is just osteoarthritis and nothing severe, I will never be crippled, I don't need any drugs, I'm doing fine, it just hurts and I am not going to get any worse.
If I ignore it it will go away, if I hide it won't find me, if I pretend I'm okay then I will be, if I don't take any meds then I don't have a disease. If I do have a disease I will hang on until they have a cure and that will be soon.
I will be the first person in the history of the world to live forever. I can NOT die, I don't want to.
Denial is my middle name. Take care. D
Denial is a game I know very well how to play. It was easier to play when I was working because I could make it through most of the motions that other people did until one day, I just couldn't. I wish now that I hadn't lived in denial so long. Maybe I would have done a better job of taking care of myself. But still, I know that I tried.
I used to drink, and then drank heavily for awhile, because it took away my pain. But, it also started making my lupus symptoms come on strong, so I quit. I started AA 21 years ago, and haven't drank in 16 years now. So, as they say, denial is not a river in Egypt.
Denial of alcoholism or our arthritici/autoimmune disease is probably the hardest part to get your head around, and of course is the #1 reason why alcoholics drink again, as they are in denial they are alcoholics.
My point here is that I made my first breakthrough on my alcoholic denial when someone came up to me post-meeting and said "Maybe your denial is so strong, that you cannot even see it or know its there". It absolutely broke through all my denial barriers, and that's when I was finally able to put down the bottle for good. Then I suffered in pain for another 15 years until I was finally diagnosed with some sort of autoimmune/arthritic/personal disease process and at least I have some sort of professional, regulated, legal pharamaceutical help now.
I am rambling, but I like the topic of denial. Cathy
HI, my husband and i drank a lot of wine!, so I know what you mean. We 'switched' to beer, but the alcohol was still there, duh! We jsut quit cold turkey 16 years ago an d it has been the best thing we could have done . Wish we'd done it sooner, but woulda, shoulda, coulda's , don't do anything but make you feel guilty (a big part of alcohol addiction), So congrats on eliminating it from your life. Celebrate! every day....meThis is something I posted on my myspace a couple of weeks ago. Denial is something I think we all stuggle with.
I've finally done it, started to set up my own website. I've been busy for the last few weeks making the jewellery for my sister-in-law's wedding, planning the wedding,(anybody need a wedding planner?), building up some stock for a market stall, working and general everyday life.
I haven't actually posted for ages. Life keeps intruding on my time. RA keeps intruding on my life. Have I ever mentioned that RA sucks. It does, big time. I watch people now, I can tell if they have RA. They way they use their hands, the way they walk, the way their ankles roll, or the way cortisone has puffed their face out. Sometimes I feel sorry for them, sometimes I feel sorry me, for what I will become. Sometimes I pretend it won't happen to me, I'll be different, I'll be the one to beat the odds. My hands won't be deformed, I won't be in constant, chronic pain, I won't lose my mobility. I just go on my merry way and live my life. I do more than I should and wonder why I crash. I keep going when I know I should stop. Maybe if I keep going, it won't catch up with me.
I have a lot of life to live before I let this beast get me. I'm just gonna go ahead and live it.
Yes, denial is a big part of it for me as well. I think thats why I had such a hard time at the pain clinic last week when the doctor looked me directly in the eyes and said this is your life, get used to it and make the best of it that you can and wants me to go on disability and get a scooter/wheelchair. Talk about a rude awaking. michele, how do you deal with the fibro and tmj? those are some of my issues too. The tmj got so bad from the arthritis that it ate through part of my jaw bone and dislocated my jaw last fall. Couldn't open my mouth for months and still only have partial function of it. I now wear a special splint made by a maxillofacial surgeon guy. I had many injections in my jaw as well. I have to be very careful not to clinch my teeth or open to wide as it will dislocate again pretty easily.