Hey, no fair!

Hey guys,

My name is CP and I was just diagnosed with PsA last year (exactly a year ago March). I’m twenty six, and though I’ve never been a super active person, I still loved to walk, and my mom could always count on me to be able to lift, open, push, pull, or untie things that she couldn’t (she has Fibromayalgia and Lupus and god knows what else).

She and I have spent the last year watching my range of motion and level of activity go steadily down: I used to be able to put a fifty-pound horse feed bag on each shoulder and carry them to the barn with her. December of last year I could just about lift one, and these days I can’t lift them at all and have to stand sheepishly to one side while one of the men carries it for me, which is just the worst.

I also can’t lift my arms over my head any more, and yesterday I walked a mile and a half with the horses and paid for it in full today by not being able to get out of bed all day (crawling to the bathroom is fun! not). I’m trying to lose weight, but it’s hard to get into an exercise routine when my body rewards me by locking and swelling up the next day.

Summer is coming up, and as usual I’ll be sweating in jeans and t-shirts because I have breakouts all down my legs and upper arms. I used to go to a gym pool for water aerobics, until an older woman pulled me aside and asked me tersely if my “rash” was contagious. Little kids stare. Adults try NOT to stare. My psoriasis doesn’t form in large plaques like it used to, but in little round silver and red spots, none bigger than a nickel, so a lot of people don’t recognize it, or think it’s scabies, ringworm, leprosy, or whatever. Even if I explain it to them and they say they understand, I still get the feeling that they think it’s gross. Honestly, I don’t want to be in the same water as me and my spots, but I don’t really have a choice.

Today I laid on the couch, and in bed, for most of the day, staring at the television even though I wanted to get up and do something, and thinking, “I’m not seventy years old. I’m in my mid twenties. This is not fair. Not fair, not fair, not fair!”

I’m trying to be positive, but the PsA and the spots and everything else is just building up and making me feel really sorry for myself. I’m currently only receiving insurance from the county, so it’s difficult for me to even get an appointment, let alone proper and regular treatment (I have some clobetasol left over from when I DID have good insurance, but since it’s so expensive out of pocket it’s only for emergencies). Does anyone have any advice to combat the blues that come with the rest of the symptoms?

Hi CP - Sorry to hear that things are pretty bad right now.

I was also diagnosed when I was 26 - I am 33now and I have found that the best thing to beat the blues is haring how you feel. I have found this site and other peoples experiences have been invaluable. To feel lke I am not alone in suffering with this disease.It helps to share, off-load and vent. This is a frustrating disease to have to deal with.

I hate feeling like I am 100 years old.

I try to list the things I have done, rather than dwell on the things I want to do and am unable to do. Cos this thing is a life changer.

Sorry I cannot be of more help. I feel like I am rambling. :)

Hugs - hope you get the help you need soon.

Louise

CP, I agree, it's so not fair. We hear you. I'm laid up today too ... long story, don't want to talk about it. The body that I fed well and dressed pretty is failing me.

I'm sorry you are struggling with this. I wish I knew what to do, but like Louise says, it does help to off-load and vent.

More big hugs for you

Seenie

CP, Yes - It is not fair! Like you my Mon had Lupus, RA and who knows what else. I'm the youngest and seem to be the one who ended up with the worst problems from her genes. I'm so sorry that this is hitting you so young. Although I started having symptoms in my teenage years, I have not had really debilitating problems until after I turned 40, and the progression of the disease has been very slow with me. Hang in there - hopefully some of today's medications will work for you.

Seenie said:

CP, I agree, it's so not fair. We hear you. I'm laid up today too ... long story, don't want to talk about it. The body that I fed well and dressed pretty is failing me.

I'm sorry you are struggling with this. I wish I knew what to do, but like Louise says, it does help to off-load and vent.

More big hugs for you

Seenie

Just a little advice, contact:

Community Clinic, Auburn Annex
11584 B Ave
DeWitt Center
Auburn, CA 95603
(530) ■■■■■■■■
1 (800) ■■■■■■■■, ext. 7215


There are 4 other clinics in the area if this one isn't convenient


Called them this morning. They can and will provide care. they also have a chronic pain program. What they are not able to take care of there, they will refer out and maintain the sliding fee scale. The simple fact is these kind of medical facilities are often better able to take care of chronic illnesses as that is what they see most. When things are rocking and rolling the Rheumys still only take care of "inflammation" everything else is up to PCP.


They have a pharmacy attached which provides meds on a sliding fee scale. If you have a script from a physician outside the clinic they need only sign off on it. For the big ones (Biologics especially) the drug companies have an assistance program. No one else is going to advocate for you, except you. its just a sad fact life.


BTW one of the biggest aggravtors of this thing is self induced. Stress/depression is obviously a part of this., but fighting the disease and seeking treatment will go along ways towards reducing some of that. The first lesson you need to learn is that you are not defined by the disease. It gets better after that - really.

Hi CP, sorry you having such a bad time and you are still so young> i was feeling sorry for myself as I have only turned 40 and thought Ive been robbed of my life. I also usd to love dancing and taking walks and can no longer do that. Been suffering from depression as well for the last 5 years. its not easy and I dont have much advise to give but I just take each day as it comes and when i feel low i just remind myself that there are so many others out there that are less fortunate than me and live in poverty and so forth... i hope you get the help that you need. God Bless

Louise,

You all are helping a lot just by reminding me that not only am I not alone, but that I can still do a lot of things :) Thank you for supporting me.

Louise said:

Hi CP - Sorry to hear that things are pretty bad right now.

I was also diagnosed when I was 26 - I am 33now and I have found that the best thing to beat the blues is haring how you feel. I have found this site and other peoples experiences have been invaluable. To feel lke I am not alone in suffering with this disease.It helps to share, off-load and vent. This is a frustrating disease to have to deal with.

I hate feeling like I am 100 years old.

I try to list the things I have done, rather than dwell on the things I want to do and am unable to do. Cos this thing is a life changer.

Sorry I cannot be of more help. I feel like I am rambling. :)

Hugs - hope you get the help you need soon.

Louise

omg tntlamb, you are the best!!

I have an appointment with the auburn clinic on friday, but I was so afraid they wouldn't be able to help me. That you went out of your way to help a stranger (and somehow got through their wacky phone system) was so amazing and kind, you're great!

tntlamb said:

Just a little advice, contact:

Community Clinic, Auburn Annex
11584 B Ave
DeWitt Center
Auburn, CA 95603
(530) ■■■■■■■■
1 (800) ■■■■■■■■, ext. 7215


There are 4 other clinics in the area if this one isn't convenient


Called them this morning. They can and will provide care. they also have a chronic pain program. What they are not able to take care of there, they will refer out and maintain the sliding fee scale. The simple fact is these kind of medical facilities are often better able to take care of chronic illnesses as that is what they see most. When things are rocking and rolling the Rheumys still only take care of "inflammation" everything else is up to PCP.


They have a pharmacy attached which provides meds on a sliding fee scale. If you have a script from a physician outside the clinic they need only sign off on it. For the big ones (Biologics especially) the drug companies have an assistance program. No one else is going to advocate for you, except you. its just a sad fact life.


BTW one of the biggest aggravtors of this thing is self induced. Stress/depression is obviously a part of this., but fighting the disease and seeking treatment will go along ways towards reducing some of that. The first lesson you need to learn is that you are not defined by the disease. It gets better after that - really.

Thanks Seenie, it means a lot :)

Seenie said:

CP, I agree, it's so not fair. We hear you. I'm laid up today too ... long story, don't want to talk about it. The body that I fed well and dressed pretty is failing me.

I'm sorry you are struggling with this. I wish I knew what to do, but like Louise says, it does help to off-load and vent.

More big hugs for you

Seenie

The Humira worked okay when I was taking it, but I was always worried about someone sneezing on me and then making me die of the flu or something, haha. On the one hand, I'm bitter that this happened to me and not anybody else, but on the other hand I wouldn't wish this on anybody else...

susan r said:

CP, Yes - It is not fair! Like you my Mon had Lupus, RA and who knows what else. I'm the youngest and seem to be the one who ended up with the worst problems from her genes. I'm so sorry that this is hitting you so young. Although I started having symptoms in my teenage years, I have not had really debilitating problems until after I turned 40, and the progression of the disease has been very slow with me. Hang in there - hopefully some of today's medications will work for you.

I always take care to remember that although some bad things have happened, I'm still very fortunate in the long run. The depression makes this hard to deal with, but at least I'd developed coping skills for that before the PsA came along. I'll keep walking until I don't have legs anymore, haha.

JoJo said:

Hi CP, sorry you having such a bad time and you are still so young> i was feeling sorry for myself as I have only turned 40 and thought Ive been robbed of my life. I also usd to love dancing and taking walks and can no longer do that. Been suffering from depression as well for the last 5 years. its not easy and I dont have much advise to give but I just take each day as it comes and when i feel low i just remind myself that there are so many others out there that are less fortunate than me and live in poverty and so forth... i hope you get the help that you need. God Bless

Cyberphuk ...

I found Living with PsA and amazing source of support. Depression can make you feel much worse - finding a local support group can be a huge help. I find blogging about my PsA and life in general to be very helpful and to put things in perspective (rannygahoots.blogspot.com). I can't do many things I used to be able to do, but I've made friends with my canes and wheelchair and have found that if I use them when I need them - or when I know I'm going to need a break early in the day to do something later in the day - they can be a huge help and enable me to do more.

Hugs to you. This site is the first best way to get some emotional support. I am so happy to have found it. I am trying to be graceful in my sense of loss of the person I used to be, but am working on learning to live live a little differently...slowly...thoughtfully, which is amazing. I notice things now in life and nature that I would not have paid much heed to in my previous type-A, non stop self. Yes, I still get really down, and sometimes you just have to go have a good cry. Then I go hug my kids and dogs.

Cyberphuk...

I'm new to this forum, but I can already see that it will be a great source of emotional support! I agree with you....none of this is fair. I was 34 when I was diagnosed, and I thought that was young, but there are younger cases out there (like yours). It's only been a year, but I've already forgotten what it feels like to do some of the things I used to do. In the last year or so, I have had remission of about 8 days....I can still remember each and every thing I did during those days. I am the type of person who can rationalize and solve any problem....except this one. I don't know what I would do without insurance....and although my work environment is making my disease a lot worse, I have to stay for the benefits. I can't believe in a little over a year I went from being an active, high energy, happy and upbeat woman to this lazy and depressed shell of a person. I'm striving to have a better outlook on my situation, but some days it's really hard!

I know exactly what you mean. Exactly.

Alexa35 said:

I can't believe in a little over a year I went from being an active, high energy, happy and upbeat woman to this lazy and depressed shell of a person. I'm striving to have a better outlook on my situation, but some days it's really hard!

CP, I know exactly what you mean about your decreased capacities, as I worked in horses as well, and years ago have been known to pick up 90 lb bags of feed... not gracefully, not for any distance, but to get them up into a feedbin at least.. I can now do so little in comparison.

Very very important to you and me, is moderation. I found that being a couch potato was a bad thing to do. Gentle steady activity is the key. It will also keep you feeling valuable. So... probably you are able to groom, or at least most of the grooming chores are do-able. Even if for instance, you can't bend to pick out hooves, do what you can on the days you can. I say this because I know how important it is to you to be able to do these things. Don't be hard on yourself.

Sometimes I think it would be a really good idea to wear a t-shirt which says. " Don't fear me ....I am NOT contagious, I have psoriasis."

You should feel free to swim, to wear shorts and feel comfortable as you can.... damn it!

I was also diagnosed a year ago march, but have apparently had PsA for decades. This is such a supportive website for us, I'm glad you're here.

Nancy