I usually open with "I have PsA", and only if asked something like, "Why are you limping?" If pressed further, I say it is an incurable, inflammatory auto-immune disease that is a somewhat milder cousin to RA, or Lupus. I never say it is RA because 2 non-blood relatives of mine died from complications of RA, and I know that PsA is not as bad as that. I'm used to the lame responses because I've dealt with such for 6 years since my older son became a type-1 diabetic. You'd be surprised how similar the responses are: "I have a cousin who...., have you tried...., should he exercise more...., did he eat too many sweets...., I know someone who died from diabetes...there's an article about a root from a South American tree.... , at least it's not cancer!" People can be clueless, and less than sympathetic to be sure. Some wish to be schooled, some do not. I don't waste time with those who don't want to know, but this is difficult when they are your close friends or relatives! It's over a full year since my first flare, which has only diminished for about 8 weeks, and then has come back. My husband is only now starting to understand.
I wrote this poem a few years ago, when I realised I was starting to avoid people!
They mean well.
by Oswalde.
Consider how wretched the plight is
Of a person who’s bent with arthritis;
For when nosey folk say:- “Why d’you hobble that way?”
What a struggle remaining polite is.
You want to be friendly and nice,
But courtesy comes at a price,
If some crashing old bore has you pinned to a door,
While he spews out unwanted advice.
These folk you don’t want to be rude to
Know your business better than you do.
Only just introduced, what a lot they’ve deduced
By witchcraft, clairvoyance or voodoo!
They bombard you with fatuous notions
You’ll be cured by imbibing some potions;
Though your hips start to ache, your knees wobble and shake,
You go through the ‘listening’ motions.
They claim that the pain in your back
Can be cured by applying a pack
Filled with extracts of plants from a mountain in France,
Supplied by their favourite quack.
Though the joints in your neck are unstable,
They insist if you climb on the table
Of their latest masseuse, with those fingers of hers
She will cure you----well, that’s a fine fable.
“How could I afford it?” you say,
“When I’m on incapacity pay?
“And my regular bills, without potions and pills
“Mean my savings are melting away?”
But don’t think that they’ve come to a halt,
For they tell you that “dairy” and salt
Should be banned from your diet, and, if you won’t try it,
Your illness is all your own fault.
When you finally wriggle away,
You feel worse than in many a day.
So avoid all this meddling, advice, and pill-peddling----
At home, you can keep it at bay.
For a long time I was lost at explaining this disease between those that don’t get it and those that glaze over during an explanation of symptoms and meds I was given some good advice from another member on here to sorta explain without explaning …the spoon theory … I recommend you look it up and maybe next time make a version of that for your situation. I usually use the spoon theory along with w short list of my personal symptoms and treatments and I found that suddenly those that didn’t get it were actually very understanding and a few others actually got online afterwards and looked for information it seemed to peek their interest more when it was no longer a list of complaints and medications and more of a this is how I have to change my entire life so that I have enough energy to get through each day. I hope for all of us one day they give those disease a better term because it is so much more than arthritis …
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
This is my pet peeve...people who take it is a personal affront when we are NOT better. Just because I look great today and am moving fine does not mean I'm better. I'm never going to "get better". Most people just can't cope with that concept of "never getting better". Chronic disease that doesn't kill is a really hard one for healthy-ish people to wrap their minds around. They get all awkward when the answer is "actually, I'm the same".
GrumpyCat, I think it is sad this doc (a dr.!) was so uninformed.
GrumpyCat said:
There is a doctor at work who told me yesterday that i was looking really well (it's my 3rd week back after being out for 6 weeks) and asked how it was going. I told him I was pretty much the same. He then said something like "your better though, right." I told him that I really wasn't, but that I was tired of rotting at home and felt like work would help me get better. He gave me a funny look and walked away.
Love it!!!!!!!!
I hope you don't mind, but I sent it (crediting you) to friends and family.
I hear ya!!! On Christmas Eve, because of going on steroids temporarily, I was able to move around better, not without a limp. but not in the severe pain I mostly am in. (waiting on an ankle fusion then a total knee replacement). My brother who rarely comes over, says, you don't look that bad, you seem to be doing fine! It's a losing battle to try to explain, my knees are shot, all of my toes are crippled and some with no joints left in them, my ankle has turned into the ground and my toes sit up higher and don't touch the ground when i walk. They ALWAYS hurt-always :( A friend looked at them one day when i was teary eyed about them and said, "they dont' look that bad" What do people have to "see"? good grief! My little granddaughter, bless her little heart, was waiting to play as I washed the dishes she sat down next to me and noticed my feet, (she was 3 at the time) she said, "Nanny, you have monster feet" I burst into tears, out of the mouth of babes, i turned it into a laugh so she wouldn't see me cry. Most of the time I'm strong about it, but here and there you just break. I get so tired of my OWN family at times, saying, 'you seem fine' now. Like it's just shrugged off to nothing. This disease is awful, what you said as a response is perfect! only I would say it like this....."I have an inflammatory disease, which is a systemic auto-immune disease. It WILL & DOES do a lot of damage to my joints a little at a time, the flares are unbearable & over time it will make me have fusions and joint replacements, it changes the structure of your bones which causes more pain, fatigue, distress to other areas,there is NO reversing this or stopping it, there is NO cure. the meds I take are pretty nasty and cause other problems, when I am sick my immune system is already lowered so I am sick a lot longer than most. I know cancer is a horrible disease that is true, but so is arthritis it takes the quality of life away a little at a time and it hurts so much, pain is an everyday thing with me. Fatigue takes good times away. I wish they'd find a cure) It's amazing how little compassion people have and undermining a disease to another. I too wish I could educate them as much as I have tried they never seem to get it. It's always, well you look fine today...grrrr lol I've written things and quoted things in trying to let them know what I go through, but it always seems to be "it won't happen to you like that" well IT WILL & it has there is no stopping this! It's frustrating!!! Sorry to everyone that goes through this daily/weekly. It's another battle we get to deal with, having this disease.
My mom, who is a great help financially and with the children, really does not get it. She has a chronic illness, sjorgens disease which she has managed very well for over twenty years. She just got back from visiting her aunt who is 88 years old and she has RA and has never been on medicine. (You have to understand that this aunt lives in a rural town in the midwest and there is only one doctor that treat everyone.) After visiting with her, my mom came back and informed me of all her aunts deformaties and how she keeps on going she has no choice for she lives alone and has to survive. I asked her if she was ever in any pain and she said yes but she had to deal with it and move on for she had to make a living when she was younger or else her family would have starved. My mom proceeded to inform me that this is the card that you were dealt and you can make the most of it. You can either wither way or you can fight and keep going for your family. Maybe my mom and other people in my family do not understand this disease and maybe they do and they are in denial for they hate to see me suffer. But if I have learned one thing from my mom story and looking at the pictures of my great aunt is that if she can continue living in spite of her limitations then I can too. I have to remember that this is the year of 2013 and medicine has came a long way since the 40's.
And for the people I meet at the store, at my children's ballgames, or at church and get the old saying oh you look so good, I am glad to see you out. I thank them and smile and go my slow merrily way. They know I am not the same person I was a year ago for I move slower, I cannot stand as long but hey I look good!
lol that poem is awesome, I'm going to copy and paste this to my fb wall LOL
oswalde said:
I wrote this poem a few years ago, when I realised I was starting to avoid people!
They mean well.
by Oswalde.
Consider how wretched the plight is
Of a person who’s bent with arthritis;
For when nosey folk say:- “Why d’you hobble that way?”
What a struggle remaining polite is.
You want to be friendly and nice,
But courtesy comes at a price,
If some crashing old bore has you pinned to a door,
While he spews out unwanted advice.
These folk you don’t want to be rude to
Know your business better than you do.
Only just introduced, what a lot they’ve deduced
By witchcraft, clairvoyance or voodoo!
They bombard you with fatuous notions
You’ll be cured by imbibing some potions;
Though your hips start to ache, your knees wobble and shake,
You go through the ‘listening’ motions.
They claim that the pain in your back
Can be cured by applying a pack
Filled with extracts of plants from a mountain in France,
Supplied by their favourite quack.
Though the joints in your neck are unstable,
They insist if you climb on the table
Of their latest masseuse, with those fingers of hers
She will cure you----well, that’s a fine fable.
“How could I afford it?” you say,
“When I’m on incapacity pay?
“And my regular bills, without potions and pills
“Mean my savings are melting away?”
But don’t think that they’ve come to a halt,
For they tell you that “dairy” and salt
Should be banned from your diet, and, if you won’t try it,
Your illness is all your own fault.
When you finally wriggle away,
You feel worse than in many a day.
So avoid all this meddling, advice, and pill-peddling----
At home, you can keep it at bay.
One of the advantages of being an adult, is you can pick you play groups.. (don't get me started on "play dates" but that's a different story) You don't have to play with anyone you don't want (and that includes family) There are far more ignorant people in the world than not. It nevers to amaze me when folks are disappointed to come across one of them and surprised that they exist in their own family. So instead of trying to come up with a way to say it that they understand, forget about it, they are ignorant. (That being said I rarley use the Arthritis word, and I don't mean to split hairs BUT PsA is NOT a milder form of RA (there are some milder forms just as their is with RA) until very recently it was thought to be RA other than rheumatoid factor was negative AND there were a number of rather horrible things that happen to PsA folk that don't happen to RA folks) Its important for US to understand our disease too. Nym has a pretty good chart posted (If I can find it.)
The prissy old ladies from the American South have come up with a perfect way to handle the ignorant who proceed to open their mouths and remove all doubt. When referring to them always state their name followed by a very sweet "bless their heart" as in cousin Bess,bless her heart was telling me how good I look" When they say some something to you your respose is "well, cousin Bess, bless your heart" unless you are really PO'd in which case its well cousin Bess bless your little ol' heart)
They will get it and everyone around will get it. (Granted it me a couple time's but I don't speak southern)
Hunh! As someone who had Hashimoto's thyroid disease before they got Psa, TRUST me! I have often longed to return to the days of just thyroid disease, and had I the option to choose between them, I would NEVER choose Psa! None of it is good, obviously, and Hashi's has it's own challenges which I managed pretty well. But the pain and disability that comes from autoimmune arthralgias is misery beyond compare and I never had any disability with thyroid. In fact, before this stuff, I could work out for hours, work in the yard all day, work 13 hour shifts and feel pleasantly tired. I was a marvel of human engineering and could bench press 125 lbs. This crap has destroyed my entire body, and I never know from day to day if I can even function, even get out of bed.
Sorry you had to deal with that. I have a bunch of surgery scars and in the summer when they're on display ppl seem much nicer than when they can't see them. No one knows until they have to go thru it, I guess. I too call it RA in casual inquiry. Ppl do seem to understand better then.
tntlamb, when you find it, please post the chart you mention (though I'm not sure I really want to see it) as I've been kind of hanging on the premise as a result of casual research that PsA is non-life threatening and does not shorten life span. Am I wrong?
tntlamb said:
One of the advantages of being an adult, is you can pick you play groups.. (don't get me started on "play dates" but that's a different story) You don't have to play with anyone you don't want (and that includes family) There are far more ignorant people in the world than not. It nevers to amaze me when folks are disappointed to come across one of them and surprised that they exist in their own family. So instead of trying to come up with a way to say it that they understand, forget about it, they are ignorant. (That being said I rarley use the Arthritis word, and I don't mean to split hairs BUT PsA is NOT a milder form of RA (there are some milder forms just as their is with RA) until very recently it was thought to be RA other than rheumatoid factor was negative AND there were a number of rather horrible things that happen to PsA folk that don't happen to RA folks) Its important for US to understand our disease too. Nym has a pretty good chart posted (If I can find it.)
The prissy old ladies from the American South have come up with a perfect way to handle the ignorant who proceed to open their mouths and remove all doubt. When referring to them always state their name followed by a very sweet "bless their heart" as in cousin Bess,bless her heart was telling me how good I look" When they say some something to you your respose is "well, cousin Bess, bless your heart" unless you are really PO'd in which case its well cousin Bess bless your little ol' heart)
They will get it and everyone around will get it. (Granted it me a couple time's but I don't speak southern)
I hear you Stony, it can be very frustrating - my family just want to see me 'healthy. So each 'good day' they comment wow you must be getting better, then a 'bad day' comes and they say "I thought you were getting better, what happened?".
I found this link - http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ - check it out, I sent a copy to all my family and friends - some have since said "Wow, I had no idea" as for the most... well they've since been 'very quiet' haha.
All the best, love and light to you - you're in my thoughts :)
HERE IT IS!!!!! and as special bonus for looking at it today it includes at NO EXTRA CHARGE a comparison to OA!!!
http://www.musculoskeletalnetwork.com/image/image_gallery?img_id=1815199&t=1299505561706
From Anne Marie: "I sent a copy to all my family and friends - some have since said "Wow, I had no idea" as for the most... well they've since been 'very quiet' haha." All I can say is "Bless their hearts....."
tntlamb, do I get a special bonus if I call now, for only three easy payments of $4.99?? lol
HERE IT IS!!!!! and as special bonus for looking at it today it includes at NO EXTRA CHARGE a comparison to OA!!!
@tntlamb, Thanks for posting this. The chart does show that PsA has more potentially more effects on muscular-skeletal systems, but I am referring to the issue of RA causing internal organ failures, such as with the lungs, and causing vasculitis, and actually resulting in death in more severe cases. I've not heard tell of anyone's death certificate stating PsA as the cause of death, whereas, RA and Lupus have been. This is what I mean when I say PsA is a "milder" cousin of RA and Lupus. It is not to indicate that it is less debilitating by any stretch, or less painful, or less life affecting. However, outsiders to the illness usually want to know in terms of mortality, not how much we hurt, or even if we end up in wheelchairs, or are permanently disabled. They want to know if it will kill us. This is just my perspective and humble opinion. The chart was enlightening though.
tntlamb said:
HERE IT IS!!!!! and as special bonus for looking at it today it includes at NO EXTRA CHARGE a comparison to OA!!!
http://www.musculoskeletalnetwork.com/image/image_gallery?img_id=18...
From Anne Marie: "I sent a copy to all my family and friends - some have since said "Wow, I had no idea" as for the most... well they've since been 'very quiet' haha." All I can say is "Bless their hearts....."
Interesting. I don't fit in either the RA or Psa catagory cleanly. The lyme damaged lungs and heart, but I have (so far) no hand bone damage. Just swelling. Do any of you guys have lot's of bone spurs everywhere? I have them in all my large joints. Is that a big part of Psa? Did anyone else have the ankle achilles things?
Annemarie, isn't that the most frustrating thing? Another thing that my dad does, and I think he honestly thinks it's funny, is that he'll hunch over and limp and pull his arms up and act like he's imitating me and make moaning noises. I guess he thinks that's a way to cheer me up or make light of a very painful episode. hunh. Boy, did HE whine and moan for 4 solid months after heart surgery. Guess HIS pain is real, and mine is comedy...
D'Mara neither disease "kills" complications from each do. (death certificates are pretty imprecise, in my two years living and working in a mortuary I saw hundreds even thousands. never saw that RA killed anyone, the leading cause was Respiratory arrest. In fact I have buried three Daughters in Law and One son. None had the real cause of death.( Car accident, Diabetes, melanoma and KIA) Two bled to death, one kidney failure and one quit breathing) same with my dad (Alzheimers but he died of Pnemonia, mom and sis died of complications of PsA. Both of their death certificates were different, one was liver failure the other was "respiratory distress.
All that aside it is common literature for both diseases to on average have a shortened life span of 10 -15 years. That is a very significant number. BUT its inflammation that does it, Controlled inflamation does not.
Red, you need only score a couple points to Have PsA on any of the scales. Basically the only difference is ONE blood test.....
tntlamb.
Ah, thanks. Haven't had the first appt. with rheumy yet, that's on the 30th. I have crepitous neck and shoulders, lower back seizes up, elbows full of spurs and really limited ROM, as well as visible joint degradation, aching hips, Tkr in one knee, synovectomies in both knees, bone spur removal as well, both achilles required surgery to deal with huge bone spurs and damaged joints. I have odd toenails that lift from the beds, lot's of dry skin around them, more than normal. A lot of dry skin around fingernails as well as lines across them, some little pit things and occasional black splinter lines. I had big red crater type bumps on my knuckles as well. Hair loss, severe fatigue.
I think the fatigue pisses me off the most, sometimes. Ppl can't see that (in keeping with the original thread) nor can they see inside me to all the damage. My hands and general appearance is not indicative of illness, esp as I have really good habits and work way harder than anyone I know to look nice. It takes tons of effort with this illness, and some days I can't even wash my hair for hours after I wake, thanks to the elbows. I don't know if any of this sounds like others with this illness? Has anyone taken care of it with just natural stuff? Do we have to take the meds to stay level?
Stoney, how does your family deal with the meds and side effects, are they understanding of that? I'm terrified that I'll have to go on them and my husband will struggle as well...
Heres the assorted criterias red,:
The "natural stuff" controls triggers. It does not control the disease. There are three parts to this thing The disease, the symptoms and the pain. Even if the last two are controlled the disease may not be. Never confuse the last two with the first.
I'm sure somebody will pipe up with a different story BUT the disease is 100% likley to effect your family. I haven't heard too many stories about side effects doing so. And hope I'm not missing the point but You and your husband will find a way to maintain your relationship and intimacy. In fact it can be become a real adventure. (Think of the possibilities getting some help washing your hair....) It's a new normal, with a sense of Humor and a sense of adventure everything will be just fine. The fatigue isn't real BTW (Its sure seems that way) Its a hormone shortage which can be overcome with "exercise" or tricyclic antidepressants.
My kids are young, 10 and 6, so they just know that mommy hurts and is tired. My husband has been incredibly supportive. He gets very concerned about side effects and possible risks, but gets it when I have explained the risks of the disease. My parents are awesome. . . My mom has her own health issues, with diabetes and severe back problems.
Now my husband's family I try to tune out as much as humanly possible. His mother goes on and on about the dangers of the drugs, and likes to think that I am not capable of handling things, that daily life is just too much for me. I try not to take advantage of that assumption too much, by claiming that I don't feel well when it's time for a family event LOL.
Redhedgurl63 said:
tntlamb.
Ah, thanks. Haven't had the first appt. with rheumy yet, that's on the 30th. I have crepitous neck and shoulders, lower back seizes up, elbows full of spurs and really limited ROM, as well as visible joint degradation, aching hips, Tkr in one knee, synovectomies in both knees, bone spur removal as well, both achilles required surgery to deal with huge bone spurs and damaged joints. I have odd toenails that lift from the beds, lot's of dry skin around them, more than normal. A lot of dry skin around fingernails as well as lines across them, some little pit things and occasional black splinter lines. I had big red crater type bumps on my knuckles as well. Hair loss, severe fatigue.
I think the fatigue pisses me off the most, sometimes. Ppl can't see that (in keeping with the original thread) nor can they see inside me to all the damage. My hands and general appearance is not indicative of illness, esp as I have really good habits and work way harder than anyone I know to look nice. It takes tons of effort with this illness, and some days I can't even wash my hair for hours after I wake, thanks to the elbows. I don't know if any of this sounds like others with this illness? Has anyone taken care of it with just natural stuff? Do we have to take the meds to stay level?Stoney, how does your family deal with the meds and side effects, are they understanding of that? I'm terrified that I'll have to go on them and my husband will struggle as well...