Denial - it ain't just a river in Egypt - PsA version

Hi all. At SK's prompting, I'm placing this thread into PsA. I originally wrote it for people with Fibro but I KNOW that it'll be every bit as applicable and useful for you:

Who of you is also going through this emotion? I know I am. I try to pretend that my elbow pain is from being on the computer too long. Fingers too. Foot pins and needles from getting my foot all wet in the rain. You name it, I'm finding ways to justify these pains so I don't have to accept it being my illness. I want a clear diagnosis and then I run from it.

I see how much others suffer with overlapping diseases and I want to cry for them. It scares me to think of having to potentially face what they face.

I think I'll wake up one morning and have the health and vigor that i had in my mid-thirties. I freak out when I sleep after a picnic and am still tired the next day for work. I can't believe the same job I did with great ease in my thirties is almost killing me now.

I freak when I see a wheelchair now, fearing I might be in it fairly soon. I want to tell every old person that I know how they feel.

Your turn. Tell me about your days of denial. Don't be afraid. We've talked about the anger aspect. Let's hear this end of it too.

No? Nobody experiences denial when confronting your disease?

I sometimes have called myself "Cleopatra - Queen of Denial"

I sometime do no wish to face my future... I am 33, I have been diagnosed for almost 8 years. I have seen a big deterioration of my ablities in the last few years. I have mostly good days, now that I am on Simponi, but I have permanent damage in my right foot. I already need a cane on a semi-regular basis, and I am sure that I will need a wheelchair at some point in the future. But I try not to dwell, otherwise I would panic and freak out at these things.

The other thing that gets to me is when I think that I am ONLY 33 years old. What will my body be like in 10, 20 years time. So I try not to think about it.

hey there

I dont think i am in denial about my PSA just confused by it...... I have had "mild" aches and pains most of my life and have always said its not the years its the miles.....(i am 46) then last Oct i was painting a bedroom ceiling and my neck hurt but it was not a normal hurt i knew something was wrong i just had no idea. So in Feb I was told that I had PsA. I dont deny that i have it... but when i can move and do things it confuses and frustrates me how can i be sick and feel "my normal" or is this just my form of denial??????

Trish

Hello Louise!

Nice to see you on site! I have heard of people having some very good results with Simponi! So sorry about the damage! I hope that they can find a way for you with that! In 10-20 years they will have perfected dynamite new drugs! I know you feel bad, really I do, but gotta stay strong!

Big hugs to you!

SK



Louise said:

I sometimes have called myself "Cleopatra - Queen of Denial"

I sometime do no wish to face my future... I am 33, I have been diagnosed for almost 8 years. I have seen a big deterioration of my ablities in the last few years. I have mostly good days, now that I am on Simponi, but I have permanent damage in my right foot. I already need a cane on a semi-regular basis, and I am sure that I will need a wheelchair at some point in the future. But I try not to dwell, otherwise I would panic and freak out at these things.

The other thing that gets to me is when I think that I am ONLY 33 years old. What will my body be like in 10, 20 years time. So I try not to think about it.

Hi Trish!

You have the fastest diagnosis I have ever heard of, it took me 7 years, which they say is average, didn't make me feel any better, and surely you finding out right away, didn't make you feel any better either!

You may not always be able to move as well, or feel as normal, unfortunately.

Maybe it is because I made it such a 'quest', that it took me feeling so terribly bad so long, crashed out in bed for 6 months at a time, not able to lift a tea cup, pick up my new born grandbabies, couldn't ride in a car without sobbing, but I didn't give up, had I not found the Rheumy I did, when I did we were going to sell stuff, pack up go to the Mayo clinic and just stay until they could tell me.

Perhaps all the hell makes me determined to take any med I can get my hands on.

I hope your disease is not fast progressing or painful, and I hope it stays that way, but it is not the nature of this disease.

There are so many truly young people on here with little kids it breaks my heart, and there are kids so sick with Fibro, they can't go to thier freshman High School classes. It breaks my heart!

SK

trishdett said:

hey there

I dont think i am in denial about my PSA just confused by it...... I have had "mild" aches and pains most of my life and have always said its not the years its the miles.....(i am 46) then last Oct i was painting a bedroom ceiling and my neck hurt but it was not a normal hurt i knew something was wrong i just had no idea. So in Feb I was told that I had PsA. I dont deny that i have it... but when i can move and do things it confuses and frustrates me how can i be sick and feel "my normal" or is this just my form of denial??????

Trish

Pet posted this on the Fibro site the evening of the 18th it has 116 responses right now!!!

For fast diagnosis, I felt abnormal hip joint pain in august and it got worse and spread to otther joints and tendons. Saw first doc in mid September and referred to rheumy and saw her end of sept. Only reason did not get diagnosis then was wanted to be careful about costs as new pcip insurance took effect in November. Diagnosed 11-2 on first rheumy visit with insurance, then x-rays and blood and mtx start on 11-9. It all hit so fast, then my hyper busy season hit then slowed in Jan. Just now really coming to grips with long term view and adjustments as it is sinking in I may never be where I was before.

I know Matt, I do. Still on MX? You need to find a 'reaction' to get to the biologics, I feel the Enbrel working after only 7 weeks! It is the way to go. You realize this did just not magically appear, it's been nagging at you for a long time, like the rest of us, you pushed it back, dropped it in the garbage with all your other troubles when you went into work each day, and it finally got your undivided attention! Wham!

It will get your attention again if you aren't on something to stop this, after trying the SZ, MX, and having adverse reactions to both, went to my GP, 5 min. away, always sees me any day I call. He sees how progressively worse I am and he hit the ceiling! Doubled my morphine again, and said why aren't you on Enbrel or Simponi, you have gotten so much WORSE!! He said MX is a cancer drug, why Insurance Cos would make us even try it is ridiculous! He was just furious, and this man is unshakable! I say GP, but he is actually an Internist. He was the first to finally put overlap syndrome together, took forever, I was set off by being rear ended in an auto accident, they were looking in the right place, but took a while for them to stop looking for trauma, and instead for disease, 7 years while it progressed. Fun huh?

Find a way to the biologics, Bud! Really!

I started enbrel in February and still on mtx. Definitely better than I was, but still pain and new joints hurting. I see new rheumy in about 2 weeks to see what else might be done.

Hey Matt,

I have heard of 3, 4, up to 6 months for them to kick in, was actually surprised it went beyond 4 months if not a good result, but perhaps it is good, but you want to go for great, hey, don't blame you a bit! Did you ever have the procedure Lainee talked about where they drain them to release pressure?

SK

I have to thank my Physical Therapists for my "fast" diagnoses i went to them for the neck was to go 3 times a week however every time i went in the pain was in a different area. So my PT talked to his "boss" who asked me to tell my story..... so they suggested strongly that I get some Rheumatology blood work done so that's how it began i hit in two areas in my blood work then off to the Rheumatologist I went and got he full work up and diagnosed.

Trish



SK said:

Hi Trish!

You have the fastest diagnosis I have ever heard of, it took me 7 years, which they say is average, didn't make me feel any better, and surely you finding out right away, didn't make you feel any better either!

You may not always be able to move as well, or feel as normal, unfortunately.

Maybe it is because I made it such a 'quest', that it took me feeling so terribly bad so long, crashed out in bed for 6 months at a time, not able to lift a tea cup, pick up my new born grandbabies, couldn't ride in a car without sobbing, but I didn't give up, had I not found the Rheumy I did, when I did we were going to sell stuff, pack up go to the Mayo clinic and just stay until they could tell me.

Perhaps all the hell makes me determined to take any med I can get my hands on.

I hope your disease is not fast progressing or painful, and I hope it stays that way, but it is not the nature of this disease.

There are so many truly young people on here with little kids it breaks my heart, and there are kids so sick with Fibro, they can't go to thier freshman High School classes. It breaks my heart!

SK

trishdett said:

hey there

I dont think i am in denial about my PSA just confused by it...... I have had "mild" aches and pains most of my life and have always said its not the years its the miles.....(i am 46) then last Oct i was painting a bedroom ceiling and my neck hurt but it was not a normal hurt i knew something was wrong i just had no idea. So in Feb I was told that I had PsA. I dont deny that i have it... but when i can move and do things it confuses and frustrates me how can i be sick and feel "my normal" or is this just my form of denial??????

Trish

Hi Trish,

You are fortunate to have such wise PTs, of all the stories out here of our year after year quest for a diagnosis, there is no one better to eliminate the possiblity of an Autoimmune than a Rheumatologist, sometimes that is also where their value is.

May I ask if you have Psoriasis, see I do not, and it made diagnosis a very long time coming.

Hi SK:

Yes I do have Psoriasis. (however that was not what prompted my PT's to send me to the docs) I may have had a fast diagnosis but that dosent mean that i havent has years on top of years of "explainable Pain" i look back and realize that all the situations i found myself in with pain i either muddled thru them or the doc would be able to get me thru them... so i never had to go thru trying to figure out what was wrong as i learn more and more about this disease I can really see that i have had this since I was a very YOUNG child I am talking back to 5 or 6 years of age. hind sight is a blessing and a curse at times. Obviously this disease waited until now to become full blown and stick around.

Trish

Hi Trish,

I am very sure that you have suffered long and hard, and am talking to more and more who actually were diagnosed as children. That is heartbreaking! It is terrible suffering at any age, and please never, ever think that I believe you got off easy. Please.

I too can look back at least to my 20's or 30's and even wonder about being diagnosed at 5 with Rheumatic fever. It was never treated with antibiotics, I do remember how I was treated at home when this came down, how I was made to rest, when I wasn't tired, and kept in and calm. Finally, was told I 'out grew it', but have to wonder. It may be totally ridiculous for me to wonder about it in connection to this.

I know, as strong as I have always been, that it has taken me longer to recover than anyone, else or any Dr ever expected, from just about anything and everything.

I was just talking to someone telling them that I worry about my grandkids, they all have Psoriasis, the 9 year old sometimes tells me his back hurts, that he wants the heating pad. I tell my son, he rolls his eyes...

Yes, a blessing and a curse!

I hope that you are having a good day Trish!

I was thinking about denial today, and specifically my denial of this disease, and it feels so therapeutic to post. I’m in my mid-thirthies, and generally healthy. I had chest pain for SIX MONTHS (before diagnosis) and somehow managed to convince myself that was normal. I told myself I was breathing wrong (not sure that’s even possible???) or had mild anxiety and that was somehow causing the pain, anything but ‘there’s something seriously wrong here’.

Amazing the ability of the mind to deny what’s right in front of it…

Petunia Girl, I sooooo know what you mean, I still find myself blaming my finger pain on the computer, even though I know better!

I don't think it's ridiculous to wonder if Rheumatic Fever is somehow related to the PsA. Chronic Rheumatic Fever is catagorized as an autoimmune disease. So perhaps your autoimmune diseases started way back when you were a child.

SK said:

Hi Trish,

I am very sure that you have suffered long and hard, and am talking to more and more who actually were diagnosed as children. That is heartbreaking! It is terrible suffering at any age, and please never, ever think that I believe you got off easy. Please.

I too can look back at least to my 20's or 30's and even wonder about being diagnosed at 5 with Rheumatic fever. It was never treated with antibiotics, I do remember how I was treated at home when this came down, how I was made to rest, when I wasn't tired, and kept in and calm. Finally, was told I 'out grew it', but have to wonder. It may be totally ridiculous for me to wonder about it in connection to this.

I know, as strong as I have always been, that it has taken me longer to recover than anyone, else or any Dr ever expected, from just about anything and everything.

I was just talking to someone telling them that I worry about my grandkids, they all have Psoriasis, the 9 year old sometimes tells me his back hurts, that he wants the heating pad. I tell my son, he rolls his eyes...

Yes, a blessing and a curse!

I hope that you are having a good day Trish!

Yes, how we manage to slough off these terrible pains and "justify" them to ourselves is amazing. I mean, the pain we suffer is incredible but we try to keep on keeping on at work, ignoring it until it just gets the best of us. And it does.

Mamma said:

I was thinking about denial today, and specifically my denial of this disease, and it feels so therapeutic to post. I'm in my mid-thirthies, and generally healthy. I had chest pain for SIX MONTHS (before diagnosis) and somehow managed to convince myself that was normal. I told myself I was breathing wrong (not sure that's even possible???) or had mild anxiety and that was somehow causing the pain, anything but 'there's something seriously wrong here'.

Amazing the ability of the mind to deny what's right in front of it...

Petunia Girl, I sooooo know what you mean, I still find myself blaming my finger pain on the computer, even though I know better!

Oh Petunia Girl, how I know what you’re talking about! For me it’s a balance between facing reality and not getting totally overwhelmed/depressed.

Hmmm...denial...I think I am past that stage now, my new stage is how will I...

My husband is 16 years my senior and has a really bad heart. So it is up to me to do the heavy things and the things that cause exertion. I am getting to the point in my disease where I can not do those things with ease any longer. I also have OA in my back and Fibro. The PsA is in my hands/wrists/hips/feet/neck. Spondylolisthesis of the L5-S1 and C5-C6. What worries me is how am I going to take care of my husband when that time comes. I have had to stop the denial and accept the fact that I have to do what I can to slow the progress of this disease. SK I too do not have psoriasis as such and am seronegative, however, I do have skin issues with the vitiligo and my nails are a dead giveaway. I worked for 28 years in medical office management and gave that up this past Feb. I have applied for SSDI and am awaiting a date to appear before a judge. SSDI has determined that I can still sit 8 hours a day and be a receptionist. Now I don't know why they think this except evidently they have not read everything that has been sent to them...So they are the ones in denial about my disease now...