I am in my late twenties, was diagnosed this January with PsA, mainly in hands and feet. It very quickly made my life very difficult, starting in early December, and is just beginning to be controlled after seven ish weeks of MTX and meloxicam. I was working, attending school full-time, and parenting. I now am working less for the time being, taking a break from school and parenting in a much more meaningful and much less physically active manner. I am very interested in learning about the subjective experience of others, and have so appreciated being able to read this forum when I was feeling as if no one understood what I was going through with this odd and painful disease.
Welcome to the group! There is a wide range of experiences, but I feel the same. It's been really helpful hearing how others are experiencing this, and how they are dealing with it.
I was diagnosed when my second child was just under 1yr old. At this point, he's 7, I've gotten to the point where I just keep telling him that he needs to be careful with me. He's a pretty active little boy.
Hello Rosen! Sorry you have to be here, but glad you found us! This is a great group. Many of us on here are parents and balance PsA with doing the best for our kids. If you have any questions or concerns about that sort of thing, ask away!
As for me, I've had PsA since age 10 (I'm 42 now), and have 2 boys, a 16yo whom I homeschool (he is on the autistic spectrum) and a 13 year old. I live in the Seattle area, have been married for 20 years this fall, and have a bunch of pets whom I enjoy: 2 cats and 2 rabbits at the moment. I have been unable to work outside the home once my son was born, due to a combination of the PsA and having a special needs child. My husband is a software engineer, so we are still able to live comfortably without my income, thankfully, which is rare nowadays.
Thanks for reaching out to me. I recently had to start taking anti anxiety meds because I was really thinking about taking my own life. The only thing that stopped me was not wanting to hurt my family. I almost admitted myself into a phych ward because no understood what was going on and there was no diagnosis. It started out with some knee aches. Shortly afterward I found out that my knees were shot and bone on bone. Quickly following I developed back pain with tingling feet. Then my ankle started acting up which insomnia was quick to follow. I went from dr to dr and was treated like some type of hypochondriac, and I hate meds I would never take them for the heck of it. It has been a very long road for me and I don’t go back to the rhem. until Monday,so as of now I have no treatment plan
Welcome… This is a great place to hear from others about their experiences, and what works or doesn’t work in dealing with this disease. I am new here myself. Personally, I struggled for many years with painful symptoms, but would deal with each symptom by seeing various doctors who specialized in that body part… Once I was given a diagnosis it all made sense. I am married and have a teen daughter, and two rescued dogs. I work as a school nurse, which possibly might not be the best place for person with a compromised immune system.
Thanks for listening, it’s is really hard to talk to people that have no idea what you are going through. I really appreciate. Thanks I will call that hotline if I start feeling like that again. This disease makes me feel isolated and very alone at times.
Hi Strugglin',
I think you meant to post this is another comment thread. This is the welcome thread for new member Rosen.
Strugglinwitit said:
Thanks for listening, it's is really hard to talk to people that have no idea what you are going through. I really appreciate. Thanks I will call that hotline if I start feeling like that again. This disease makes me feel isolated and very alone at times.
Strugglinwitit said:
Thanks for reaching out to me. I recently had to start taking anti anxiety meds because I was really thinking about taking my own life. The only thing that stopped me was not wanting to hurt my family. I almost admitted myself into a phych ward because no understood what was going on and there was no diagnosis. It started out with some knee aches. Shortly afterward I found out that my knees were shot and bone on bone. Quickly following I developed back pain with tingling feet. Then my ankle started acting up which insomnia was quick to follow. I went from dr to dr and was treated like some type of hypochondriac, and I hate meds I would never take them for the heck of it. It has been a very long road for me and I don't go back to the rhem. until Monday,so as of now I have no treatment plan
I struggle with coming to terms with having it. Every time I think I'm starting to feel "normal", it sends me reeling again. Being young makes it that much more difficult. I'm not real young at 39, but I still have people saying, "Just wait until you're my age". No, I'd rather not because I know how I feel now and the thought of living another year and getting a little worse is scary for me. Believe me, everyone of us understands!
I was so happy to have found this site.... I am still too tired to really get up the energy to post much but it is so helpful to read and learn that there are others who understand....
This has been such a difficult illness....thank you all for being here and sharing......
I certainly learned more from you guys than I learned from my Doctor... I think she is great but I don't feel that she truly understands the full effect this has on a person's life....
I guess unfortunately you can't understand how it can be until you live with it
I don't post very often but I know how you feel. I sat here and cried with every post I read. Realizing this wasn't in my head and that I wasn't alone.
Best of luck to you
Hi Rosen. Welcome. I am sorry you have this diagnoses but I am glad you found us. This is a great place to get information, ask questions and make some friends. I have found the people here to be really kind and supportive. Come talk to me any time.
Welcome, you have found a place where people get it. I feel you are in an important stage of the disease, coming to terms. Many of us struggled for years to accept the disease and the limitations it causes. Be prepared, many friends and family will think you are exaggerating or even making things up. I know this sounds crazy but trust me, it will happen. Have your husband learn about the disease and it will make it easier for him to understand when lifestyle changes have to be made, and they will. Be aware that many people struggle with depression and anxiety while coming to terms with the disease, they can cause a downward spiral that is pretty much unstoppable. Mostly remember that the disease does not define you, your kids will still love you, even if you can't do gymnastics with them. I have been 16 years since my diagnosis, I have had many ups and downs, and the support you will get from this sight is something that we all need. Once again welcome, educate yourself, keep a fighting spirit and don't be afraid to come here and vent, we all do at some point.
I am having treatment after a diagnosis several years ago, and I am still working to come to terms with what happens with this disease, along with the effects of aging. It has changed my life a lot, and my husband is good natured about it. He runs marathons for fun, and will be running in Boston for the 4th time this spring. I don't go with him anymore, it is just too hard to travel and no fun when I get there. I can barely make it across the street, hardly drive at all anymore, and quit my job years ago, so I am a bit isolated. I could go on, but suffice it to say, my life has changed a lot, and my main goal now is self acceptance.
I haven't posted much lately because I have too many irons in the fire, but I do want to share how much support I feel every time I do! When I was diagnosed 2 years ago I went straight to the internet and found Ben's Friends. I have been so impressed with the information but equally by how supported I feel. The next time I went into my Rheumy I told her about the site and she as thrilled. The next visit I brought business card size with the website and a personal statement, she and her mentor now hand them out with all new patients and leave some out in the lobby. Helping someone always makes feel stronger and better able to handle the pain. Last year I was diagnosed with Sjogrens and neuropathy and have found support here for those 2 additional conditions. What I am having major problems with is how difficult is to qualify for Disability, just so discouraged.
Welcome! I so agree with all the above! I found this group a few months back and they have been a God Send! I have found that what little self-esteem/pride I've had has taken another hit because, as garmstro67 mentioned, even friends/family don't understand. I've learned to educate them.....having my husband read some of the posts on here has been a huge help!
This is a GREAT support group to have! :)
What a GREAT idea!! I have found a wonderful new Rheumy and know they will like that idea of sharing the support! :)
Michelle said:
I haven't posted much lately because I have too many irons in the fire, but I do want to share how much support I feel every time I do! When I was diagnosed 2 years ago I went straight to the internet and found Ben's Friends. I have been so impressed with the information but equally by how supported I feel. The next time I went into my Rheumy I told her about the site and she as thrilled. The next visit I brought business card size with the website and a personal statement, she and her mentor now hand them out with all new patients and leave some out in the lobby. Helping someone always makes feel stronger and better able to handle the pain. Last year I was diagnosed with Sjogrens and neuropathy and have found support here for those 2 additional conditions. What I am having major problems with is how difficult is to qualify for Disability, just so discouraged.
Welcome Rosen ! I'm glad you are getting your PsA under control. I think it is smart of you to work less now and focus on your health. Many of us have had significant improvements after the first year of being diagnosed. I hope you find this forum useful and will share your experiences with us. We all learn from each other.
warmly,
Frances
That's great to hear that this forum is helping your husband understand about PsA and what how you feel. That's wonderful !
sunshine said:
Welcome! I so agree with all the above! I found this group a few months back and they have been a God Send! I have found that what little self-esteem/pride I've had has taken another hit because, as garmstro67 mentioned, even friends/family don't understand. I've learned to educate them.....having my husband read some of the posts on here has been a huge help!
This is a GREAT support group to have! :)