Thank you guys for the posts. I thought it was just me.It is so nice to know that you guys are reading and understanding. I had my 4th Humira shot today and my 8th dose of Metho this afternoon. I am trhinking that this will work and that I will be better soon! I know my past posts have been a whiney bitch but I am not really like that. Want to be poitive, want to be the best I am better today, I am not going to let this diesase beat me. I told my son in law today, I am woman, I am strong and I believee it!
Good on you mat. But it’s ok to have bad days just as long as we don’t wallow in them.
Thanks Robyn. I am going to move forward and think of the best days ahead!
After spending the day with a sweet man who has terminal cancer and watching him enjoy life reminds me “we may have this disease but the disease does not have us.”. Knowing we are all in pain and frustrated remember we are alive and living the best we can. Remember Life is an opportunity so make make the best of it anyway we can.
My eyes have been blurry as well... I went a lot of years without being diagnoised and ended up losing ALL vision in my Right eye for about 1 solid year.. I went from 20/20 vision to 2200 vision (legally blind).. It was called anterior UV itis.. It was explained to me as swelling or inflammation of the iris. With all the swelling in my knees and etc.. I would have NEVER thought they would be connected.. But when I met with my Rheumy for the 1st time, he asked me if I had ever had problems with my eyes.. when I told him about my history he said that goes along with PsA.. AMAzING isn't it?!?!!? Even now, I can tell when I'm having a flare my vision gets blurry and of course I get stiff and swell.. Ready for my REMICADE again!!!! :)
Tootall 62 said:
While I hate that we are having to experience this whole PSA thing, I think it is as bad or worse than RA, there is no way a healthy person could begin to understand what we are going through on a daily basis while trying to just live our lives. Some days it is just tough. As I type, my eyes are very blurry and that is a new something that is starting to concern me. I got told that I wasn't "sick", I just had a "metabolic disease". Ughhh... I'm sick and tired....it suxxxxx.. Sorry for the rant, what I meant to say was that while we are living through this it is of great comfort to know that someone else does get it and that we aren't alone. I do what I can, on a good day I can accomplish a few things, some days...I can't, it is alot to accept when you are used to working hard and now it hurts to get to the bathroom. I have almost given up driving because my hips hurt and my low back. My sons are grown and in the Army, my youngest has a new bride. My mom does alot for and with me and I feel guilty because I should be taking care of her, wish I had gotten more of her genes, most were blessed with good health and longevity. I guess what I'm trying to say is we just have to get to our own place of acceptance, and no furthrer explanation needed
I understand exactly where you are coming from! Here is a little story I came across one day and actually have told it to a few friends/family and I think it actually helped them understand alittle bit (or at least not make me feel like I am just being a baby, they just dont understand!)
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Praying you are feeling better and here's to a great year for all of us!
I don't get it. There are people with severe arthritis and "mild" arthritis, but you can't compare one person to the other. Even if one person has far more joint damage than another, the overall pain level and fatigue may be perceived to be less than another. As to comparing RA to PsA, they can both be any level of severity. I know one woman with RA who takes ibuprofen as needed, and has continued her career as a professional artist.
I often need to take a break. What would happen if you gave warning? For example, there are plenty of times that I tell my family that I'm having a rough day, and will likely need to lay down for a while in the afternoon. Mind you, I may make this announcement by 10am. Do you think that might be helpful?
Everything you just said is understood about RA. but as far as PsA, not so much.
FWIW even though PsA had been known since the early 1900's, it was not seperated from RA until the late 1960's. The reason it was seperated was because of the addidtional and more severe symptoms (many in Nyms chart) Far different from RA is, thew high level of chronic exhaustion, enthesesisitis, organ involvement and eye innolvement among other things and of course the skin....
Tntlamb, you always amaze me with what you're able to find!
Thanks guys, just knowing i have new friends here makes it better! Your support means a lot!
Those who know me well have seen me slow down a lot in the past few months and know I've always been a very energetic and busy person. If they think I've just become terminally lazy and disinterested that's their prerogative! lol I more have to come to grips with it myself I guess... realizing that sometimes I have to allow myself to flop in the the lazy boy for the day in a Netflix coma!
Try not to let their lack of understanding get under your skin... and know that we're out there with you each day trying our best to overcome the same situations...
A good 2013 to ya Marry Anne!
Hi there. I completely get it! And I know how it feels to feel fine for a while and then crash. One day I just can't go to work due to the fatigue and then the next day I feel fine. I've had to go to short contract jobs because my good/bad days are so unpredictable. You don't' "look" any different so it's really hard for folks to understand how bad you feel.
Your husband is probably frustrated too because he wants to be able to "fix" you and this is definitely something he can't "fix". My husband was that way. He wouldn't even read anything about PsA because he felt so helpless in that regard. I finally asked him to please read about it and learn as much as he could so he would understand better. He did and that has been very helpful.
When you have the bad times...try to remember that you will feel good again. I wish you the best! :)
Thank you AnnaMcF. My husband so wants to "fix" me and he doesn't realize he can't. I don't mean to whine, it is just so nice to be able to find a place that somewhere, someone understands how I feel. Some days great, some days not so much. My husband has a back issue and more times than not it is his issue not mine that we need to deal with. Problem is, his can be fixed with surgery, but he won't get it, so he thinks I can do the same - oh wait, not fix it for me. I have had a really great few days and some not so good. Told my husband and our (mine and his) 6 girls tonight mom is strong, I am woman, I am grandmommy to twin boys, I am woman! My bad times will not define me, but my good times will. So, taking bets, name the date/time my babies will be born and if you get it I will make a $50 donation to the chaitity of your choice. Due date is April 4th. If anyone is paying attention to this post her original due date was April 18th but it has now changed to the 4th.