Yesterday I had an appointment with my rheumatologist to fill out paperwork for SSI and left feeling almost defeated. I am in so much pain all of the time (she did call in a new pain med but I forgot what it is called) I had the silly notion that the meds I am on would "fix" me and she explained that the damage done is permenant and her goal is to stop or slow down the disease to try to prevent further damage. I probably should have realized this but it still came as kind of a shock.
I hate to compalain so I usually don't, but just keeping up with the house work is a challenge. It has been over a year since the DR took me out of work and I am frustrated to no end. I feel my body has betrayed me. I am angry and tired and feel so guilty when it comes to my 9 year old because I can't run and play with her like I did the older kids. I hate not being able to work and earn an income. I do not like having someone else support me (although I know he doesn't mind). It's a bad and very early morning and I would love a good sleep!! I am usually a very positive person (not that it sounds it this morning) and hate the way I feel right now. I hate having to wear a leg brace ( to keep my knee from giving out) I hate using a cane or a walker I am still young yet feel so old!
Geesh does anyone ever have a day when they just feel so angry at it all?
I know exactly how you feel. I have been going thru the very same thing for a while now. I received ssdi approval 4 months after applying. It was difficult for a while to accept not working, playing with my 10 yr old the way I use to. But you will make adjustments and look for different ways to play with your kids. Boards games, video games, etc…be creative. Right now it’s difficult but you can get there in time. My kids have all made huge adjustments with me, so we are able to interact the way we use too.
I’m not big on complaining either but sometimes you just got to do it! As far as sleeping, I take clonezpam to help me sleep now. It worked well for me but not everyone. I can relate to your having to use a cane. I use mine everyday. Wheelchair/scooter if I go anywhere where I need to walk a short distance or further. Everyone stares but I have learned to ignore them. I am 41 driving a scooter built for a much older person it seems. But I don’t care what anyone thinks anymore, if it helps me conserve energy to interact with my family!
My husband sent me the link below concerning methotrexate and its failure to help psoriatic arthritis. I took it for months before switching to 4 other drugs. This is a must read. The more educated we are about the chemicals we put into our bodies, may help us from taking unneccessary drugs. Keep positive and strong.Sue
I'm sorry to hear about all the pain you're in and the fact that you're feeling angry about it. Believe me, you're not alone. Sometimes you need to vent and it's okay to do that. I'm not on any meds at all. Scared of the side effects of mthtrx & others, just taking ibuprofen for the pain, which is practically useless. My fingers are getting more & more deformed and I seriously don't know what I'm going to do about it. I'm retiring in August because the pain after a day of work is unbearable. I hope you have better days ahead. We're all in this together if that could be some small consolation. Take care, Christa
Hi Ali, I used to feel that way a lot and I do still have the occasional meltdown but you know, your family understands that yo can't do as much as you used to. I have had two knee replacements and am waiting on a shoulder replacement so my housework capabilities are practicaly nil. I am on a study drug and am feeling quite a bit better, a lot less inflamation and pain, but I can't overdo things because then I am in a lot of pain. This studyis a five yr study and is in its second phase It should help a lot of people with PSA and also psoriasis on its own. Please feel free to comunicate with me.By the way I live on Salt Spring Isl. British Columbia, there are aprox. 156 peoplein this study world wide.I am a young 66 yrs old. I am also injecting methotrexate once a week. Hope to get off mtx soon.
Ali, honey, we all have days where we just want to beat something! I am 35, and while my diagnosis and symptoms are newer than some of yours, I can really relate! The other day, I had to ask a coworker to take the plastic cover off a dish for me. Talk about humiliating! There's days where you're just so tired, in pain, and you can't do the things you think you should, and it all becomes too much to bear. If venting to us, listening to us, helps you, gives you what you need to pull it together, then do it! That's what this support group is for, so we know we're not alone in this! Vent all you need to!
And yes, I feel anger, a lot... I'm a former cheerleader, dancer and runner... and when I get up from the couch or chair I have to shuffle bent over until my ligaments adjust to the new position. My kids are 7 & 4, and they just don't understand why mommy is tired and sore all the time. I'm angry that this hand has been dealt me, that I did nothing to bring it on, and that there's no cure. That there's no money in a cure. I'm angry that I have to sit on the couch instead of run after my kids; sit because I'm so tired or sore; have to take time off of my jewelry business because my hands just won't perform for me.
Ali, you're not alone, none of us here are, and I'm thankful every day that I found this place!
I just HAD to reply to your post, Ali. I too am chasing a 9 year old boy and my PsA makes it near impossible to keep up with him!
I just started with a new rheumy six weeks ago, and I am so blessed that the meds this dr chose worked wonders for me. I too had just about given up hope, having Ps since the age of 5 and PsA for much of the past ten years at least. I was with a dr that just threw whatever meds he could think of, never addressing the real root of the problem. the massive inflammation my body was experiencing. I was almost wheelchair-bound when I met my new rheumy, six weeks later I am walking almost pain free. The trick was to get a medpack of steroids for me and start on methotrexate.
It is so easy, I found out, to develop tunnel vision when you feel so miserable. Find what you CAN do and just keep at it. Make it a priority to do ONE thing a day, even if it means clearing off the coffee table. Focus on the CANs, and hope for the days when you can do the CAN'Ts. I know I have an incredibly supportive husband and child, and I wish I could contribute more to the family financially, The bad days will pass...don't beat yourself up. If your daughter allows, on my bad days my son and I have a "movie marathon" just so mom doesn't have to move much that day.
I hope I have helped...just know that we are all here to listen. Sending my prayers for you!
Yes!!! I am sure we all have days like that. I do. In a conference, I heard two doctors say that people with chronic conditions need a psychiatrist and many times an antidepressant. I am on one, have my Dr. and take them regularily. They help me cope. I was hyperactive and workaholic, and spent my days crying because I wanted to be the same I had always been. I am not working now (SSD) and my life is way much slower. Yet, I have learned to enjoy life from a different perspective. (That's the antidepressant for you, Baby)
PsA will always be there. Pain, I have learned to live with, my constant companion. Medicines, they come and go. They help and make me worse at times. It is the way I face life what has changed in me.
You have a beautiful daughter that not only needs you, but will help you forget at times what PsA is. You may not run with her, but can enjoy many other activities together. Think about what you can still do together.
And, don't feel bad. I do feel like that at times. It's nice to vent it out with people who understand. You are not facing it alone.
I am from the UK and I have been on Methro for 20 yrs at first I was sick all the time and very ill but eventually got used to it and now take sickness pills with it so feel better
I have a new consuloatant as was disappointed with my old ones care
anyway I have had problems with my blood levels and liver tests so have been taken off meth for thoses resaons and then put on it again when things settled down
I didnt notice much difference whilst off the meth as when I was on the meth I told my old dr this and he said I would really miss it long term
but from reading your article this seems not correct that infact it doesnt work for us and we are better off with a different drug
I also take Enbrel but dont feel its doing much for me as I dont feel any better on it
the only thing that really helps me is good pain control I have morphine patches and they help as the pain is bearable
I find it very difficult to sleep at night as the pain is so much worse I was on sleeping tabs for years but came off as I take so many tablets
I just take extra pain killers if I cant sleep and that seems to help
I am now at a lost at what to take as I have to decide about the embrel and if its working if I came off it thats it as its the second drug I have taken and tests show the first one wasnt working
I cant take any other drugs as I had Ulcerative colitis for years and also asthmatic so not sure what I can do now
especailly after this article about the metho ots sp doffoci;t isnt it
what is SSI ?
thanks for all the info keep it up
sue
Diz254 said:
Hello all,
My husband sent me the link below concerning methotrexate and its failure to help psoriatic arthritis. I took it for months before switching to 4 other drugs. This is a must read. The more educated we are about the chemicals we put into our bodies, may help us from taking unneccessary drugs. Keep positive and strong.Sue
SSI is a government benefit in the United States. It's for people who are unable to work due to a disability.
I think that all your diseases are tied in together due to the inflammation in body's tissues. I've had asthma for almost 30 yrs and we've never been able to figure out what triggers an attack. There's no rhyme or reason for when I have breathing issues. Once I was diagnosed with PsA last year I did a ton of research and found an article that mentioned inflammation linking PsA with other diseases. Kind of makes me wonder if it's all tied in together.
Yep I do. I have three children, 18 years, 14 years, and 10 years. The younger two do not understand. I cannot file for SSI or disability for I quit my jobs when I had my oldest and have not worked since. I am not able to do any house work because of my wrist and shoulder issues. My right knee is inflamed and my ankles are swollen from gout. I ended up hiring household help to help with the cleaning and possible someone for the laundry. I do not know how we are going to pay for this. I did buy a motorized scooter to help me get around so I do not miss my kids activities. I cry all the and miss the old days. I spoke with my dr. yesterday and he too changed my pain med to some type of patch and I start this today. I haven't tried any of the new meds for PsA or RA because I have not seen a rhuemy till August 15th and the interest did not want to tweek anything so I would not mess up anything for the rhumey. I am hoping once I start the bio meds amd I will find one that works and I can get some relief. My oldest plays college football and I do not want to miss many games. My 15 year olds plays as well and my 10 year old is just starting her sports.
I am angry all the time!! My dr. said this is normal and it will pass once I start to feel better. Know their are others likes you here and we can vent her because we all understand!!!
Anger is a natural part of the grieving process - and we all need to grieve the loss of life as we know it. I started a blog soon after I was diagnosed to in part help me process my PsA diagnosis and the dramatic changes living with PsA has made in my life (rannygahoots.blogspot.com).
I have five homeschooled kids, ages 13, 12, 10, 6, and 4 ... and have another 4 year old, a 2 year old, and an 11 month old in my care 2-5 days a week. It can be challenging, but we are all learning great life lessons. We're learning how to enjoy more doing less. We're learning the joys of wheelchair races and seated volleyball (with a beach ball - it can get absolutely hysterical). We're learning to do things differently, but we can still do things. And best of all, having a parent with a disability is teaching my kids compassion, that people with disabilities are PEOPLE, and that when life gives you lemons, you can not only make lemonade, but all varieties of lemon delicacies! I'm perhaps a more mindful and present parent now than I was before PsA slowed me down.
I have days when I get angry, but I try not to let the anger last long. Life is too good to stay angry, even on the days I can barely function.
Best I can tell, PsA and RA can strike anywhere in your body, anytime and do anything it wants. Frankly, for the hypochondriac it's the perfect disease. For those of us who don't enjoy being sick: it sucks. That being said, I am in awe of many the the correspondents to this site: youse guys know a lot about this disease and the meds; a lot more than I do. I just know what it's doing to my body: nothing good that I can tell.
In re methotrexate: I believe it helped me for years but it takes it's toll, especially on the liver, and I can't take it anymore. Phil loves Enbrel (one supposes he gets his for free) but for the uninsured I understand the retail cost is about $1500 a month, which is costly. Fortunately I can't take that either: TB risk. I have been told by my new Orthopedist that the "folk remedy" glucosimine chrondriton.(..whatever) works for joints over time. He says studies have been done in Scandanavia, I typically avoid meds that are not sanctioned by some science so I was surprised and encouraged about his endorsement. I am going to try it, looking for subtle benefits but it's great to take something, anything, that doesn't do harm to some organ in my body.
So, other than the occasional aleve or some such, what is one left with? Not much really. Except maybe some relief from the glucosamine (sp.?)
I move as much as I can every day; I am starting a new regime with a new physical therapist to exercise more purposefully. For psoriasis, which frankly I fear more than pain, I am trying to use the steroid cream as sparingly as I can--skin thinning. I am encouraged by the seeming benefit of a thrice a week dip in the ocean. [I live at the beach in VA.] I think it really helps my inverse psoriasis but I got no science to back that up--just my own anecdotal but we all should know that with our personal PsA we will likely find relief in a wide variety of ways (or not).
In short, metho worked for me until it helped destroy my liver [Free advice (worth what you are paying for it, I suppose): Don't drink while taking metho (or other liver and stomach damaging diseases. It's bad.]
Milo's my dog said:
SSI is a government benefit in the United States. It's for people who are unable to work due to a disability.
I think that all your diseases are tied in together due to the inflammation in body's tissues. I've had asthma for almost 30 yrs and we've never been able to figure out what triggers an attack. There's no rhyme or reason for when I have breathing issues. Once I was diagnosed with PsA last year I did a ton of research and found an article that mentioned inflammation linking PsA with other diseases. Kind of makes me wonder if it's all tied in together.
Hi! I feel the same as all of you. It is so frustrating. The other day I had a staff meeting, and afterwards, all of my co workers were going to go to lunch and then to a casino for fun. Well I couldn't even get the strength to get up and out of bed to go. I feel so helpless, and of course they don't understand what your going through. Good luck and God bless!
I know. There are days when it takes me up to 4 hours to find the strength to get up. Other days find me with so little strength to even reach the bathroom. But, the thought of tomorrow being a different day with enough strength to go about makes those days bearable. This past Wednesday was one of those days.
I learned from my son that so for as long as I know, who cares if the world does not understand? We do, and that is all that matters.
Its very surprising to hear how you feel, it's almost a mirror image of how I feel. Some days the anger just consumes me and I feel like putting a hole in the wall. I found it's best to just talk to someone, have someone tell you that you aren't being irrational and that you have every right to be angry. Also just distractions to help take your mind off of it. I also had to quit my job when I was diagnosed, it was too much for me. And keeping up with house work is expected from me because I don't work. I'm sorry that you feel the same way I do, I wish you the best luck in the world that you can find a medication or remedy that will ease your pain, as I'm trying to do now.
