I've been noodling around on the site and thought I should introduce myself. I've recently been diagnosed with PSA and am still trying to connect all the dots. I'm in my 5th week of MTX--now my injection due to nausea from oral meds. I am on a pretty good regimen of vitamins and supplements and I've switched to gluten free since the end of the summer. I'm still on a decent dose 20mg of prednisone until the MTX starts to offer some relief (tried one taper and had a horrible P and PSA flare).
This week has been bad as I've had a flare in my joints and I am trying hard to fight off a sinus infection. I have antibiotics ready if I get a fever or if the infection takes a hold.
It is really hard to come to terms with this disease. I find myself irritated by those who--although they mean well--give me the "hope you feel better soon" line. Now I'm not meaning to be ungrateful, and often people mean well but just don't know what to say, but I haven't felt well for quite some time and some days I can't even summon the strength to do the dishes or a load of laundry. But I look just fine on the outside so people assume I can't be _that_ sick.
And as for work? Well it has been a while since I've done a full 40 from the office. I'm grateful to be able to work from home some. And of course my colleagues don't see me with medicine on my scalp and heating pads on my feet. Rather they see me gussied up with my game face on. So I suppose I don't look sick to them either.
So why am I telling you all this? I don't think it is for sympathy--rather I think it is for your empathy. You all know to some extent what I mean and what I'm coming to terms with. I'm barely 2 months into my diagnosis and 5 weeks into my second treatment plan. This is still new for me--and I know I don't like it. I still don't know my limits, when I've done enough, when I should rest. I feel sluggish and judged and some days I even convince myself there's nothing wrong with me and this illness is all in my head. Then I get a flare...back to square one.
So, that's me right now. Is the therapist in? I might need a session!
It is like you writing my autobiography.. I have been treated for a few years now for psoriasis only.. it has helped substantially, but at the same time.. i ache all the time and get tired soooo easily.
I thought it was just me ... for awhile.. feeling sorry for myself.. then beating myself up for feeling this way.. my poor husband.. doesnt know whether he is coming or going with my moods... lol....
I have recently been diagnosed with PsA... and am probably going to go on Enbrel.. I am in the denial stage right now.. lol... u know.. I cant get this... it cant happen to me... having sooo many questions... I want to get them all answered first.. do you know what I mean?
Im going to my PCP next week .. and going to ask her.. all the questions I will probably ask the Rheumatologist too... cover my bases... If you would like me to go into more detail.. as to the type of questions Im asking.. just let me know..
So glad to hear that they are being pretty aggressive with your treatment. That's important to getting a jump on things. That's good that you've been able to work from home. The comfort and flexibility that it offers can make a big difference. It's not all in your head, and knowing how to recognize your limits will come with time.
I agree with you Jane, we are given what we need to learn. I am learning patience and modeling it for others too! I would onlu caution you to cut yourself some slack. I would beat myself up terribly on the days I was flaring for doing too much. On the days I felt good I felt I could have gotten more done. I have recently learned that because my PsA is not under good control yet and I have tried multiple meds I do not know my limits as it keeps changing. This disease is hard enough without putting so much judgement on our activity levels. I am going to try using minimal goals each day ( shower, at least 2 meals. slight housework/ or picking up at least, one hour of paper work......you get the idea). I will also have a goal of one fun thing and swim/ hot tub 3X week. I really believe others will treat us as we treat ourselves so if I treat myself well and respect my limits so will others. At least that is what I am thinking about right now!
You are not alone in anything you just said. There are times that my coworkers ask "what is it you have again, ARTHRITIS???" Words cannot explain what we have so I just say its PsA and I think most of the time I lost them at P... Keep the faith, it does get better. I was diagnosed 5 years ago and I really didn't think my doctor would find the right combo. But she did and now I can work 12-15 hour days and survive. It's a matter of having a really good doctor and you being ready to try anything. Good luck and I am just as glad as you are that we have someone that understands whats going on in our head ...lol
I recognize your words, they are like old buddies in my head, esp., the part of " am I amking this Up' you will get sued to it... You won't like it but you will get strong......... My daughter is Jillian but her nickname for fun is Jane and every Jane I know is fab.....
thanks! I'm trying to get on with getting on. Some days are really hard and this is very new. I'm so glad that there are people like you out there who DO understand. My partner also has a chronic autoimmune disorder so I'm in good company (misery?). Best to you both and see you around the site. ~ Jane
Just recently I have had a problem with HUMIRA and I go tomorrow to see what can be done. I am getting alot of blister like lesions, psoriasis in the eyebrows, in and on the scalp and everywhere I have not had it. I will find out what will happen, but I think the last injection prompted this reaction. Soon I will know.... so tired...
Oh, BOOP! I'm so sorry to hear you're suffering. I hope you get an answer soon. Are you on Humira only or are there any other things that could be causing your reactions? Sounds terrible for you. BUG hugs to you.
Hopefully it will work out, it has to be the humira, as I was allergic to methotrexate and has sychosis..... Lots of fun that was ! Yes a nervous brakdown, lockdown and all....... seeing things, oh it was awfu.... But that was almost 3 years ago, so onward soldier...... sorry if its to much info..... I just cant stand the lesions on my face, vanity you know.......