Sometimes it's hard to find Success Stories, Positive Discussions or groups that are uplifting on the site. We want to make it easier for you to find them....
So if you leave a link to a positive Success Story or a Blog Discussion post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!
Well, time I posted here.
I’ve been a member of this site for a little less than two years; it was just over two years ago that I had sudden and vicious onset of PsA.
It was in so many joints, and so bad, that within weeks I wasn’t sure I’d be able to walk two blocks (and in fact on a number of occasions had to rest half way). By week 4, I was having a bad flare in my lower back and my feet and legs went numb. I had to be helped up the stairs to a restaurant, and later to get out of the chair to go to the toilet.
I was 36 with a two year old daughter, wonderful husband, and executive career.
I had some very difficult and even dark times, but there are other parts of the board for that!
I’m currently in a remote gold exploration camp in Burkina Faso, West Africa, my Humira with me, not having to even consider how far the walk is… Or if I have enough energy for… And looking forward to getting home and being an engaged and loving mum for my gorgeous little girl, who is almost four, and a glass of wine at sunset with my husband.
I know the success is most likely temporary; I had to go off the Humira for a few weeks due to possible chicken pox exposure, and started to get quite ill by the end ( IBD as well as PsA).
I have had such an amazing chance at a second life, and I wish the same to you
I have enjoyed watching our friend Phil winning golf tournaments.
You inspire us all, Jen!
Well, time I posted here.
I've been a member of this site for a little less than two years; it was just over two years ago that I had sudden and vicious onset of PsA.
It was in so many joints, and so bad, that within weeks I wasn't sure I'd be able to walk two blocks (and in fact on a number of occasions had to rest half way). By week 4, I was having a bad flare in my lower back and my feet and legs went numb. I had to be helped up the stairs to a restaurant, and later to get out of the chair to go to the toilet.
I was 36 with a two year old daughter, wonderful husband, and executive career.
I had some very difficult and even dark times, but there are other parts of the board for that!
I'm currently in a remote gold exploration camp in Burkina Faso, West Africa, my Humira with me, not having to even consider how far the walk is.... Or if I have enough energy for.... And looking forward to getting home and being an engaged and loving mum for my gorgeous little girl, who is almost four, and a glass of wine at sunset with my husband.
I know the success is most likely temporary; I had to go off the Humira for a few weeks due to possible chicken pox exposure, and started to get quite ill by the end ( IBD as well as PsA).
I have had such an amazing chance at a second life, and I wish the same to you
Well, there are not too many success stories here. That is unfortunate. I tried Methotrexate and it was wonderful. My skin lesions were gone, my joint pain was gone, all withing a week and a half, but then the leg cramps became so severe I had to quit taking it. So now lesions are coming back, pain in joints is returning. I would rather have the leg cramps. So, the medication was successful against the disease. :)
Hello there, Jest! You’ve noticed something really interesting about this board – lack of success stories. Here’s what happens. People are very active here when they are newly diagnosed and when they are having problems. It kind of gives the impression that everybody with PsA is sick and in pain. The ones who are coping well, they’re … well, they’re off doing other things! A few of us “copers” are still here, though!
Wonderful story! Thanks for sharing it with us Jen !
Jen said:
Well, time I posted here.
I've been a member of this site for a little less than two years; it was just over two years ago that I had sudden and vicious onset of PsA.
It was in so many joints, and so bad, that within weeks I wasn't sure I'd be able to walk two blocks (and in fact on a number of occasions had to rest half way). By week 4, I was having a bad flare in my lower back and my feet and legs went numb. I had to be helped up the stairs to a restaurant, and later to get out of the chair to go to the toilet.
I was 36 with a two year old daughter, wonderful husband, and executive career.
I had some very difficult and even dark times, but there are other parts of the board for that!
I'm currently in a remote gold exploration camp in Burkina Faso, West Africa, my Humira with me, not having to even consider how far the walk is.... Or if I have enough energy for.... And looking forward to getting home and being an engaged and loving mum for my gorgeous little girl, who is almost four, and a glass of wine at sunset with my husband.
I know the success is most likely temporary; I had to go off the Humira for a few weeks due to possible chicken pox exposure, and started to get quite ill by the end ( IBD as well as PsA).
I have had such an amazing chance at a second life, and I wish the same to you
My lowest point was in my first flare after falling when trying to get my knickers up ( really did get a bruised eye because I hit the door on my way down)…upshot was the only way was up…meds kicked in, re- ordered my life and I now have balance, lead a productive life and I’m happy.
Never give up hope, and do something everyday to bring you joy x
Seenie said:
Hello there, Jest! You've noticed something really interesting about this board -- lack of success stories. Here's what happens. People are very active here when they are newly diagnosed and when they are having problems. It kind of gives the impression that everybody with PsA is sick and in pain. The ones who are coping well, they're ... well, they're off doing other things! A few of us "copers" are still here, though!
I think successes come in many forms. Here's my success story:
I've had joint issues all my life. I was told for years that there was nothing wrong with me, it must be in my mind, etc. Or that I was faking or seeking attention. I finally found a doctor who believed my swelling, pain, and exhaustion were real and had a battery of tests done. And then I got pregnant with my first child. I felt better than I ever had during pregnancy. I ended up having five kids in nine years and my symptoms disappeared during four of the five pregnancies. After having my fifth child, my health steadily went downhill. In February of 2011 I woke up with incredibly swollen ankles. I went to the doctor and was referred to a rheumatologist. I finally had my rheumy appointment in April 2011, and he couldn't believe I was able to walk. By then, my ankles and knees were huge and I was in a ton of pain. I had the standard tests done, and long story short, ended up not going on Enbrel until December (I think?) because of further testing, a celiac diagnosis, and liver issues. The Enbrel greatly improved my arms and legs, but my back and neck were still incredibly painful. It wasn't touching my ankylosing spondylitis. I started Remicade, and it worked wonders. I then was taken off of Remi for liver testing and was diagnosed with autoimmune hepatitis. Back on Remicade, I went from spending a great deal of time in a wheelchair to hiking the White Mountains of New Hampshire. I definitely call that a success.
Since going on Remicade (for the second time), I've had ups and downs with my health, but overall I'm vastly improved. My quality of life - from the ability to do things to my perspective on what's truly important - is more than I could have ever expected, especially when I was at my lowest points with PsA.
You’re right, Nym, success takes many forms. Your post got me thinking about my biggest PsA success, and here’s my conclusion: the high point was getting the correct diagnosis! After years and years of problems attributed to this, that and (often) myself, I was finally able to point to the source of the problems and start treatment. The Gap (the period between diagnosis and successful treatment) was long for me – pushing 18 months. That was a tough time, during which I depended heavily on my friends here. I guess making new friends here should be considered a success story as well!
very well said Seenie!
Okay, I am new on here. Newly diagnosed (but I have dealt with PsA issues for years and just didn't know what is all meant). Doesn't that sound familiar? For so long I was in the dark and just thought I was always having "issues". I am learning a lot right now and I think of that as a success.
I am in "the Gap" as many of you have called it. We are trying meloxicam. It hasn't helped yet, but just knowing that my doctor is working on finding what will work for me and that many of you have tried different meds lets me not feel alone in this. That lifts my spirits and I think that is a success.
Finding this site....really big success!
My husband, though he is concerned for me, is happy we now know what we are dealing with. His attitude is giving me more optimism and I think that is a success.
Every day I wake up with different pains (knees, elbow, hands, swollen fingers, neck, hips) but when I take a hot shower and get moving I feel a little better. If I sit too long I hurt more, so I force myself to move and usually I find I can accomplish things. Sometime the things are small like gathering the trash, or going through the junk mail but also sometimes they are big. I also find that by staying busy, I realize I have had a few moments in the day that I could actually say I forgot about it. That is a HUGE success.
I own a business and after my diagnosis, I was told to limit my stress...I laughed, seriously, a good laugh. Easy to say - hard to do. But - it forced me to think of my priorities. So, I put some time on my calendar to take a hiatus for a few months to relax and travel. Stop and smell the roses so to say...but I am going to Hawaii to smell the plumeria. Warm breezes, salt water to float in, and naps. When I get back I will only take clients when it fits my schedule. This will limit stress. Another success.
There is a big stress in my life but I love it. I am also a theatrical director for a community theater. It is demanding but it brings great joy. I will do this as long as I can. The planning I can do at home which helps. The on-site rehearsals are exhausting but the adrenaline push during them helps me get past the pain. During this current production I had to sit more and bring on someone else who could choreograph the big numbers. But I am growing a team committed to the vision so that it continues when I can't do it anymore. Right now I am directing "Fiddler on the Roof" and the song "L'chaim, To Life" has great meaning. Life...grasp it while you can. Keeping my optimism while this disease is progressing is the biggest success yet.
Thanks for listening and sharing....if you are in the Seattle area and want to come to the show, I will be happy to give you the info.
Stress, I knew stress well. But, then I learned how much is just enough and problem solved. We will never ever not have stress, so we learn to live with it.
I have a success story for you...I still have a job! No joke. I really do. Before I was diagnosed and while I was in that trial and error period before Enbrel and then before Humira I was absolutely certain I was going to get fired for missing work. But the meds work. And once the pain is lowered, the stiffness abated and the fatigue taken care of there was no stopping me.
I went from investigating where the closest handicapped parking space was around my building to exercising five times a week. From worrying about getting fired to taking a new job with responsibility for educational programs for over 36,000 undergraduates. From worrying that if my partner learned how to work the washing machine that she would have no further use for me to marrying her.
With PsA the small victories are victories nonetheless and each small success should be celebrated. So come on, people. Let's celebrate ourselves! Who's ready to party? And yes, we'll keep the music at a reasonable level, serve gluten free food and end at a reasonable hour so we can all get plenty of rest... Oh and no booze if you're currently on MTX. ;)
I love that! Indeed a success :)
janeatiu said:
I have a success story for you...I still have a job! No joke. I really do. Before I was diagnosed and while I was in that trial and error period before Enbrel and then before Humira I was absolutely certain I was going to get fired for missing work. But the meds work. And once the pain is lowered, the stiffness abated and the fatigue taken care of there was no stopping me.
I went from investigating where the closest handicapped parking space was around my building to exercising five times a week. From worrying about getting fired to taking a new job with responsibility for educational programs for over 36,000 undergraduates. From worrying that if my partner learned how to work the washing machine that she would have no further use for me to marrying her.
With PsA the small victories are victories nonetheless and each small success should be celebrated. So come on, people. Let's celebrate ourselves! Who's ready to party? And yes, we'll keep the music at a reasonable level, serve gluten free food and end at a reasonable hour so we can all get plenty of rest... Oh and no booze if you're currently on MTX. ;)
Well Sybil, it is the success stories thread, so whilst you may feel like the rock hard calves are boasting, most of us just find it inspirational 
so glad to hear!
sybil said:
I was reluctant to post here and I suppose that’s because I think of myself as waiting for success … on reflection that should read ‘even more success’!
So I’m joining the party janeautiu, I’ll be in the kitchen resisting the booze, then I’ll gulp down a couple of sneaky glasses, then I’ll empty the kitchen by banging on about existentialism.
I’ll probably go outside for a cigarette too. I can’t quite quit totally … not at parties anyway. That is a teeny bit relevant because 2 years ago PsA hit so hard that I could barely move due to stiffness, pain & hideous fatigue. There came a point where I couldn’t smoke anymore - I didn’t have the energy. I often reflect on that - an addicted smoker, too weak to smoke - rock bottom.
These days, by contrast, I walk up the steep hill behind our house most days and it is a big 'un. Yes, my knees are dodgy, but I have rock hard calves! I went on holiday to Morocco a month ago, I paint for 5 or 6 hours a day. I could go on but I feel like I’m boasting now, especially the ‘calves’ bit!
I have some wobbly days physically and emotionally but I’m now pretty sure that PsA is not going to get the better of me. In fact it has been a bit of a wake up call & I’m more feisty all round than I used to be and have a sense of direction that used to be lacking. There’s plenty more success to come I’m sure.
Impressive outdoor activities, Anna--and what a superb photo!!
Anna said:
Just last week I hiked a mile uphill and of course back down through a cave in Pinnacles National Park.
I am starting to feel human again! Over the past couple of weeks, after being on methotrexate since January 21st of this year, I have started to be able to use my hands and walk on my feet without infuriating my joints and tendons! I learned through having a MRI that my hip pain is due to large cysts in my spine, which means that I may need to have surgery to remove the cysts at some point, but I don't need to be on biologics for PsA, yet. The methotrexate is kicking the PsA in my hands & feet to the curb, and I am finally coming out of the dreaded Gap!
Now, I am more aware of my potential limitations and have a drastically changed perspective on how busy I want to be... having these months in which I was forced to do less and be home more gave me opportunity to be present for my son and family in a way I haven't been for years. I am so grateful for my rheumatologist, for the support here (mainly just my reading up on others' experiences), for my awesome family and for how capable my body is of healing! Methotrexate treatment scared me, but it has given me freedom and relief from pain. I am so incredibly grateful!
Woohoo, rosen! So happy to read this post. I know you were having quite a rough time of it. Sorry to hear about the cysts, but great news about the mtx working and starting to feel human again!