For the most part today was a really good day . . . and then. Sigh, how do you make people (your family - mom, husband, daughters) understand how you really feel? I think that this is my real problem. They don't get that I have good days and bad days. And while most of today was great, the past few hours have sucked. My husband and I have just had a huge fight because I can't do what needs to be done, I need a break. Several members of my family have RA and the rest of them offer them so much support but to me it's just like get up and move on Mary Anne you don't have RA so it can't be as bad, not realizing that I need some TLC too. Sorry, I am whinning again, I will stop. Thanks for letting me vent and thanks again for your support, it does mean a lot!
You just whine. We all whine, not all the time, but we all have our days. The difference between us and the rest of the world is that we “get it”!
OK, my whine for the day. We were going to go on a road trip, but this morning I had to admit that I wasn’t up to it. Once again, we are staying home on my account. It happens too much, and I hate it.
On a brighter note, while at the supermarket (on my scooter) I met an acquaintance who is badly affected by many years of RA. She gasped “What happened to YOU?”. My answer was “Same thing that happened to you, except mine is psoriatic.” Her reaction? She made a wincey face and said “Oh hell, psoriatic is really awful.” I could have hugged her. Hey wait, I DID hug her! She got it.
Seenie
For the purposes of a non-doctor/non-patient, psoriatic arthritis is rheumatoid arthritis. It's inflammatory arthritis. When people ask me what I have I tell them I have "PA, it's a form of RA". I'd love to find a chart of how all the IA diseases are classified, but I think it starts with symmetrical versus asymmetrical. But then, PA can be symmetrical and RA can probably be asymmetrical. So really, it's a judgement call which you call it. Tell your family that you have RA, just like your other relatives and that the symptoms can be horrendous or quite mild. We get too caught up on this rather fine distinction. Arthritis is either osteo or inflammatory an TBH I think OA has an inflammatory component sometimes! My point is, just say you have an RA that tends to go along with psoriasis.
Or, simply say: I wish it were RA, I'd be better off, But its not. . .
Here's a comparison of PA vs RA.
http://rawarrior.com/psoriatic-arthritis-rheumatoid-arthritis/
So let's see, PA is RA except that:
- Rheumatoid factor is negative 95% of the time with PA
- Psoriatic Arthritis affects genders more equally than RA
- Most RA patients eventually get rheumatoid nodules; Most PA patients get painful rashes and 80% of the time that includes nail damage
- Rheumatoid Arthritis rarely affects the DIP joints close to the fingernail, but Psoriatic Arthritis does more frequently.
Like oh goody, we get RA which can also hit the end of our fingers an toes and we usually get skin issues to go with it. The difference isn't like Mac vs. PC, this is more like a Dell PC versus HP PC.
Thanks Andrew. I did tell my daughter tonight to just think that I have a different type of RA than our aunt and cousins have, it is just called PsA and here is what I suffer from. I think she gets it, now to work on the others! I just find that if I say I have Ps arthritis that everyone has a remedy, something that their 90 year old aunt has and here is what works. I have so many good days that when I have bad ones nobody gets it. I guess that I am just having having what everyone calls a flare right now and I am miserable. I am so new to the meds that I just thought they were the magical drugs and I would be perfect! Thinking on the positive side, they will work, they will make me better! I can see a difference in my hands, now just waiting for the same results on hip/back/let/foot. Like you, my cup is half full!
With PsA, people around us will treat us like we are normal people. without any disabilities because they have seen us in our good days. But on our bad days, it's kinda hard to make them understand that we are sick. Especially when you are only in your twenties and thirties..People tend to make faces coz we have a disease that usually experience by the elderly...But keep a positive mind..this can keep your mind of the stresses..;)
I have no one in my family that understands.. or to be honest cares to understand.. I would say my children (13 & 8) are more sympathetic than my husband, mother, father or siblings.. My husband completely ignores it and acts like there is absolutely nothing wrong (even on my bad days).. Before starting Remicade I could barely walk.. could barely go up and down stairs.. he acts like it never happened.... I feel the exact same way that you do!
When I had my bad flair, I went to work with a cane. My co-workers "got it'. It freakin hurt!
I'm like Andrew. I just tell people it's RA, and if they notice the P, I say that's a bonus. My PsA has always been as severe as RA, so it's really not an issue. Only if someone knows me well do I bother to explain the difference. Some people SORT OF understand the severity of RA now. PsA seems to not be on the radar as a severe degenerative disease.
My father had polymyositis. Now you're thinking, some weird rare disease. You don't know how to classify it or even what to think about it.
So instead I'll say that my father had a form of muscular dystrophy. Now you know exactly what I'm talking about. You're thinking wasting muscles, wheelchair, no strength, the whole package.
It's the same with saying RA versus PA. I like Marietta's response that the P is a "bonus" lol.
I've grappled with explaining the differences between ra/psa/oa myself ...http://rannygahoots.blogspot.com/2012/10/not-just-arthritis.html
I LOVE this chart:
Hi there. I cope with all that most days like you but somedays it all just gets too much. Always trying to be patient and coping with pain and difformity as nicely as possible, not to mention judgement from family and strangers. Considering what we go through I think having a bad day sometimes is completely normal. My main problem is I don’t complain or whine about how I feel so people forget and become complacent. Perhaps this is where your husband and family are at. Our disease is very debilitating chronic and life changing but unfortunately not widely known like ra. Hang in there and don’t forget we are all here for you and understand how you feel.
Nym, thank you for posting that table. Someone who isn't directly involved with arthritis might understand inflammatory versus non-inflammatory. The rest is rather technical. To the casual observer, we have an inflammatory arthritis (of which RA is the best known example) with psoriasis as a bonus.
Is RA really better to have?
tntlamb said:
Or, simply say: I wish it were RA, I’d be better off, But its not. . .
You can have mild RA or severe RA. You can have mild PA or severe PA. You want neither, but whichever you have, you want it to be mild and you want it to respond to treatment. It's easier to explain and get help for a more common disease, so in that sense RA is better.
There is no question that having a more well-known disease makes life much easier. My Rheumy refused to Dx me with PsA, he said because he couldn’t see visible dactylitits.
His notes say seronegative polyarticular spondylarthropy. We put seronegative Rhuematoid on my application for biologics (could be fair - my involvement is almost symmetric, so we can ignore some other CASPAR criteria). Not only is it easier in Aus to get treatment, but for example RA has five biologics approved; PsA has only three.
When he originally refused to Dx PsA, I was angry, but only for the few days it took me to do the research and realize it was an accidental blessing for treatment (and I guess it’s possible that I’ve misinterpreted all the symptoms that are classic PsA…
In the groups I mix in, I’d argue that inflammatory arthritis of any kind is so rare, I usually go with autoimmune and a few select symptoms. Everyone thinks Arthritis is OA, so unless I am attempting to minimize the issue, for work for example, I don’t even use the word arthritis.
I try really hard not to whinge to my family, but I’m very lucky to have great support in my immediate family. Whilst I don’t whinge, my husband asks for me to factually let him know if I’m having a bad day - he finds it hard to tell until I push myself so hard that I crack, and then he feels unprepared to deal with it.
Sometimes it can be easier if there is an early warning that you’ll need a rest (in the same way my toddler needs to have the “almost time to pack up now, then we’ll have a bath, ok, last play before bath, pack up now, then we’ll have a bath … Etc… Etc”)
I doubt this will adequately deal with an unsupportive family, but sometimes, giving people a bit of notice that superwoman / man is about to be vulnerable 
can give them the opportunity to respond more gracefully.
While I hate that we are having to experience this whole PSA thing, I think it is as bad or worse than RA, there is no way a healthy person could begin to understand what we are going through on a daily basis while trying to just live our lives. Some days it is just tough. As I type, my eyes are very blurry and that is a new something that is starting to concern me. I got told that I wasn't "sick", I just had a "metabolic disease". Ughhh... I'm sick and tired....it suxxxxx.. Sorry for the rant, what I meant to say was that while we are living through this it is of great comfort to know that someone else does get it and that we aren't alone. I do what I can, on a good day I can accomplish a few things, some days...I can't, it is alot to accept when you are used to working hard and now it hurts to get to the bathroom. I have almost given up driving because my hips hurt and my low back. My sons are grown and in the Army, my youngest has a new bride. My mom does alot for and with me and I feel guilty because I should be taking care of her, wish I had gotten more of her genes, most were blessed with good health and longevity. I guess what I'm trying to say is we just have to get to our own place of acceptance, and no furthrer explanation needed
I never use the term inflammatory arthritis. I use the term autoimmune arthritis. I think it is more accurate, and for many people it sounds more serious. Most people understand at a basic level what autoimmune means (the body attacking itself). If you go to the iaam website http://www.iaamovement.org/ it explains why using these terms are important for raising awareness.
Hi Tootall, best get yourself to an optometrist for a check ASAP. There’s a number of things those blurry eyes could be, including some pretty serious things associated both with PsA and the meds we take that can cause permanent damage to your sight.
Hopefully you’ll be lucky like I am - its just connective tissue swelling around the eye for me that pushes on my cornea and makes it blurry when I’m in flare. Who would have thought? Arthritis of the eyes!