My third Stelara shot is a few days from now. So far, the past two shots haven't helped. I know it can take a few weeks after the third shot to work at full force, so I am hopeful. In the meantime I am on an anti inflammatory for my back, something to help me sleep, and 1/2 tab of tramadol for my knee pain. The pain meds do help a lot. I feel much better and happier. No pain, I can smile and laugh.
The problem, I hate taking medication. I hate not being in control. I hate the way pain meds and sleeping pills make me feel. I want a way to fix all my problems without medication, but after 27 years of problems I know I should give in. But I am new here. I lived so long with a problem that had no answers. It's hard to accept those answers or treatments. Tell me I'm not crazy, is this normal? To have someone hand you relief but want to fight it anyway? I guess I am just scared. Plus the fatigue and pain have been so bad lately. It seems it got worse after my diagnosis!
You are not crazy. This is normal. You are scared. This is normal.
I'm so glad you are on the PsA site. It is exactly where you need to be right now. You are going through what we all have gone through and continue to deal with. The more information you get the more there is to process. Sometimes you feel like you have no control. Sometimes you feel like you have lots of control (like having meds to take but wondering if you should take them).
Give the meds time to work--some work more slowly than others. And above all else give yourself some time to process all of this. You have a chronic illness. Chronic. It will not go away. You cannot wish it away. You need to learn how to allow it to have room in your life without taking over your existence. That all takes time.
For now, be gentle and kind to yourself. Have a cup of (decaffeinated) tea. Ice your knee. Rest. Take your medications. Then rest some more. And keep coming here and yelling for help. Good luck and be kind to yourself.
Thank you janeatiu. I shall try. I am trying to find a motto. So far I have "Embrace the medication, don't be a martyr."
janeatiu said:
Amielynn,
You are not crazy. This is normal. You are scared. This is normal.
I'm so glad you are on the PsA site. It is exactly where you need to be right now. You are going through what we all have gone through and continue to deal with. The more information you get the more there is to process. Sometimes you feel like you have no control. Sometimes you feel like you have lots of control (like having meds to take but wondering if you should take them).
Give the meds time to work--some work more slowly than others. And above all else give yourself some time to process all of this. You have a chronic illness. Chronic. It will not go away. You cannot wish it away. You need to learn how to allow it to have room in your life without taking over your existence. That all takes time.
For now, be gentle and kind to yourself. Have a cup of (decaffeinated) tea. Ice your knee. Rest. Take your medications. Then rest some more. And keep coming here and yelling for help. Good luck and be kind to yourself.
I hear you Amielynn38. I have trouble with the loss of control too. I have had to learn to let it go. Not easy for us A Type personalities. I think some people may accept it more easily. But I have fought it every step of the way. I suffered a post partum depression 20 years ago and had to take medication to get over it. I have tried twice to stop the SSRI ( with the supervision of a physician) but have slid back into depression when I did, no matter how slow a taper off of it we did. So I did learn then that I needed my medication enough to live my life. The medication made it possible for me to do the hard work to get my life turned around. I divorced my husband and raised my son as a single mom. But I could not have done the hard work needed without the medication helping my brain to process stuff. Similar to PsA. I need the meds to help me have a life. Without it I would get stuck, literally! Though it is similar, for me to accepting I needed an anti-depressant. I am the nurse! I give this stuff out I don't take it! But I became a better nurse and mom when I was able to admit I needed help. David (my son) has learned so much on taking care of himself by watching my struggle. Though it is so hard to be vulnerable to kids but teaches them so much. He just turned 20 and it easier now tha he is older.
Remember fear the disease not the drugs. It has become my mantra! Though I like your mantra too. I was more able to do stuff once I accepted my illness. While I was fighting to not have the disease I wasted a lot of time and energy. Now it is different: I accept every day will have some pain and stiffness but it is up to me what else it will have.
Your frustration is normal. We have all been there. We get it.
Sybil, You are right. There was a time when I saw a therapist after the loss of a baby. She told me that I AM in control. I made the appointment and I was there talking to her. That's taking control. She is still right. I know I need the medications, I guess needing them changes something about me. About who I am. I am afraid of that change. The loss of my youth. The loss of something that made me, me! I feel so very old. I know I have many more years to come where I will feel older, but I don't feel 32.
I saw a picture of myself from 6 years ago. I look so young and happy. My skin looked amazing. What happened? Life and this disease as worn me down.
Amielynn, I can relate! You are not alone, as you can see by the responses.
Having this disease is the pits-having any disease is, and I often have to remind myself there are worse things.
But it's still not easy accepting having to deal with day in and day out pain, and now having to inject meds to feel good. And, in your case, since the Stelara isn't working yet, hope to feel good soon!!!
Why can't we just be like everyone else who's healthy? My boss is 75 and healthy as a horse, and my other coworkers are all healthy. Nobody else in my family or relation has this crap. But, a cousin does have sclerdema, and I wouldn't want her life!
Thanks Grandma J. Yes, "the pits" is a good term for this. My grandmother also has a similar medical problem. So we swap stories. It's nice knowing she understands.
Yep, I recognize the "I want it fixed, and I want it fixed now" feeling. It's actually what we're used to. Broken bones heal, the flu eventually goes away, the surgeon yanks the infected appendix and it's all just a memory before too many moons. This ain't that. Chronic illness is a drag.
You do have control in some areas, though. If you hate pain and sleep meds, see if you're happier without them. It may not be a great set of choices, but you do have some options. After 27 years (took me about that long to get any sort of diagnosis also) I hope you are finding some ease of mind in knowing what is wrong, and knowing that you can do something about it. If Stelara isn't the answer, there is a whole slew of other biologics to try.
I have more choice words for it, but I might offend some people if I use them! That’s nice your grandma understands…although if she’s like me, her heart was heavy when she found out you, her granddaughter, got it!
Louise, yes. If Stelara isn't the med for me, I will switch. True, after diagnosis (finally) I thought, now I can be fixed. Ha! No. It was justification that I had been right all these years but now the game begins. I'll play the game until something works. And no, I don't feel better without the medications. I need them.
Grandma J, she was heartbroken. She cried. I would hate this for my son as well. I fear it. Worry about it. He already has eczema.
I know it will take time for me to adjust and instead of being able to do it all I will have to pick a few things. I'll have to limit myself to be able to enjoy the things I do choose.
I have seldom worn makeup, but these days I find myself thinking about wearing some. Just to have my face look youthful. Cover some of my rashes. I'm not incline to wear dressy clothes, mostly hiking type clothes. Nature-ish. But maybe if I dressed up just a bit, it might help? Probably not. I'll feel like an old lady in a smart outfit.
I wouldn't be dressing up or wearing make up for anyone but myself. Only to feel a little better about the way a I see myself in the mirror. I think that is a healthy level of vanity. Now how about some fishnets and a gogo dress? :)
Hi, I'm new to this site. I was just diagnosed with PSA by default, and am on Plaquenil and Methotrexate. I'm on my 8th week of Meth..and the side effects are getting a bit better. I have to say my pain level right now is good. I'm just battling with fatigue. I don't know how to tell the difference between the PSA fatigue and med. fatigue. Any suggestions?
I can relate to amielynn..I HATE taking medications. I can't remember what I feel like without them now..and having no control is horrible.
Hello waterbug100, and welcome. I am not currently on Methotrexate nor have I ever been. So I am no help talking to you about meth fatigue. I know I don't have much medication fatigue, that I know of. Mine is mostly pain fatigue. Just pain all day and by noon I am wiped out. I also stay home with a 4 year old, so I am always on the go. My energy is good from 8am until 12 or 1, then I am zonked.
I'm just finding out about PSA - was a shock to be diagnosed with something I hadn't remotely thought I would have.
I'm sorry you have so much fatigue, especially with a 4 year old. That must be really difficult at times.
I find I'm just generally fatigued, but especially so after the meth day, sometimes takes up to 3 days after to start wanting to do anything, I used to be very active - running, biking, hiking..and still try to do those things, but find it sets me way back if I push it.
What meds are you on, if that's not a rude question to ask? Have not been on a chat before, so apologize if I am breaking protocol!
Haha! I don't know if you are breaking chat protocol or not, but I am fine with the question. I am currently taking Stelara, Tramadol, and Elavil. I have a strong anti inflammatory for back pain and many creams and ointments for psoriasis.
I just took my 3 rd shot of Stelara and then landed in the hospital with a cellulitis. I am a nurse and there is only one hospital here so talk about feeling totally out of control. I was on the wrong side of the bed. I am still trying to accept what all this means. Job Chang, medication, mobility aids, pain meds etc… The unknown… I did in hospital have good chat with a Dr friend who said plainly " chronic diesase sucks and pain sucks more but, you are still you and you can drive this journey". At first I thought ‘yeah, yeah…’ And then I thought about it. Ok I have PsA, I take meds, I need help with things I didn’t before. If I was my own patient what would I say to me. I think that chronic disease is a chronic mind shift battle and we may never truly be finished it but it may lessen. I think we (I know I am) are hardest on our selves and do struggle with the search for the fix. Maybe we (I) just need to stop thinking of myself as broken but as just more complex? Or a different word, I do not know. I need to stop saying hate taking meds and start saying I like that I can live more as I want to with them.
Pain and fatigue are aweful and really knock me for a loop every time I think I am moving forward. I am actually going to do myself up a schedule like I had in university to look at managing energy better to try to help with fatigue. Even with that I know there are going to be bad times. I am going to try very hard to focus up not down. Who knows what we can accomplish with a change in perspective.
Know that I am right there with you and many are, so you are definitely not crazy. We just need to figure out how to look at this disease and associated factors in a way that will support our lives I think.
Ok enough rambling time for meds, again. ( see hard to do even after writing this). Hang in there
Thanks Kirsten. Just had my third shot yesterday. Feeling pretty run down and in pain. My son has a birthday party to attend today and I am not looking forward to it. Besides having a chronic illness I am also an introvert. Social situations can be tricky. I am going to smile and make the most of it. Hopefully we can duck out a little early.
