Hello all my name is Mel, I live in Seattle and I am currently a student working on my masters in counseling psychology. I was diagnosed with PsA about a year and a half ago after years of suffering, and doctors not taking me seriously. I ran every day, competed in triathlon, was training for marathon, and was an avid mountain climber. It has been a huge change in my body, and in the activities that I love. It felt so defeating when I had to apply for disability. I have tried many different medications, and complementary therapies, and have have yet to find a lot of relief.
I joined this community because I do not know anyone else that has Psa. I have great friends that try so hard to understand. My husband and I were dating when I was first diagnosed, and he has been incredible in his support for me both physically and emotionally. I find myself wanting to connect with others so that I can hear and learn about other people's experiences.
Hello Mel,
Its great to have people here who understand PsA, its a great comfort to me. I hope you find some relief soon, all I can say is keep trying to find that combo that works for you.
Its good to hear your husband and friends are supportive…we all need a support network when times are tough x
You have come to the right place to make connections. I have found this community to be of great assistance both in emotional support and the wealth of information & experiences shared. I know it is a big adjustment, especially for someone as active as yourself. It is a process. Part of that process is finding effective treatment to best manage our symptoms and curb the progression of this illness. Unfortunately, it takes time to the assess efficacy of each option. The good news is there are multiple options available and new options emerging. So hang in there.
I too am now on disability. I understand your feelings of defeat. But realize that disability insurance is nothing more than insurance to provide for you when are facing challenges like these. It is an earned and deserved benefit. Too often today our society seems to so narrowly define our value as human beings only in terms of our immediate contributions to a market economy. Yet we are so much more. Clearly your husband sees this in you.
This illness is challenging enough. So I have had to learn to let go of self critical narratives such as equating disability with defeat. Disability insurance is merely a tool to help us move forward. And being declared 'disabled' is merely an acknowledgement that our situation has undergone a significant change. These changes require developing new strategies, learning new skills, and finding a way to thrive. There is much discussion in this forum and community as to how best accomplish such things. Our journeys with this illness are unique. Folks more often seek refuge here in their most difficult of times. As such there is a disproportion amount of discussion of struggles/problems. So please bear that in mind as you read through the forums. I know that on my good days, I am out trying to best live my life, not typically posting here. I hope you find some relief soon! Again ... welcome ;)
I am going to the Dr. on Tues. to see if he will help me... and send a letter to SSA.... regarding disability.. I already have a lawyer waiting for that determination... it has to be the dr.. or work saying that i cannot perform my job...it is very close to that now.. i have been reprimanded twice in just a few months..my cognitive function is deteriorating gradually.. i think it is to due to the lack of sleep and/or my medication. Before that i was an exemplary employee for 16 years.. so you know that with the disease and/or the medication is taking a toll on me. I cry alot... my husband is supportive.. he tries to understand.. but just doesn/t get it.... I think guys... want to be able to fix things.... and cant.. so they just want to keep thing going the way they used to be.... I just recently had surgery on my big toe... and it is taking 3 times as long to recover - so frustrated.. and during my recovery - I found out I broke my middle toe.. I didn't even know how or when i did it.. (pause - taking a breath) Enough ranting for now.. I can add more later....
Your days of not knowing anybody with PsA are SO over! You’ve probably already gorged on the many stories (some of them horror stories) which we share here. But all’s not grim: there are also a lot of people here who are coping well, and living relatively normal lives. (I’m not quite there yet.) They just aren’t quite as visible!
So tell, what’s your rheumatologist’s plan, and what medications are you on at the moment?
Karen, you really are going through a rough patch. Did you ever start Enbrel, like you were planning to last fall?
Seenie, yes I did.. but due to toe surgery in November, 2013 I was off it for a week.. dont know if it changed anything.. hope not.. I started Enbrel in December of 2012
I have so many questions for Dr. I will... make a huge list on everything - I bet it may be several pages long.. I feel sorry for him.. lol... he is the most caring Dr,. I just love him.. he takes the time to really listen.... to everything.... and I have a lot..
I will post again .. after my appt.
love all of you.... hold me up once again....
Karen Seenie said:
Welcome, Melissa
Your days of not knowing anybody with PsA are SO over! You've probably already gorged on the many stories (some of them horror stories) which we share here. But all's not grim: there are also a lot of people here who are coping well, and living relatively normal lives. (I'm not quite there yet.) They just aren't quite as visible! So tell, what's your rheumatologist's plan, and what medications are you on at the moment?
Karen, you really are going through a rough patch. Did you ever start Enbrel, like you were planning to last fall?