I just want to feel good again. In early November I ran a 15k, and I was feeling great. I’ve been on steroids since March and a variety of biologics. Now I’m on Remicade and I’m hoping it will work. I have got to get off these steroids. I’m a first grade teacher, so the risk of getting sick is high. I got sick in the beginning of December, and I think it triggered a flare up. It’s finally subsiding, but I have this terrible nagging pain in my SI joints and hips. It’s restricting my ability to workout which is kind if who I am. My rheumatologist is having me begin a very slow taper of the steroids, and I’m so afraid that I will flare up again. I just am so tired of hurting. I keep telling myself that it will pass, and I will be back to running and working out, because as we all know, PSA is a roller coaster ride that you never wanted to get on. It’s just hard to not get down about it. My husband and I have also been trying to get pregnant, which brings on a whole other set of stressors. I’m so afraid that PSA is going to mess it up. Argh. Sometimes it’s just so much to handle and staying positive seems sooo hard!
I’m so sorry you are dealing with this at your age. I was undiagnosed at your age and though I could have been better now, less damage if treated, for knowing, I am glad I didn’t know. I just kept plugging and hopeful because I didn’t know I wasn’t getting better.
Now the good news, I had so many good days, there were many stretches of less pain, better alertness.
I am hopeful for you to get some breaks along the way. Pamper yourself and don’t give in to feel like it’s laziness. We have enough trouble than to worry about ignorant people who don’t know how good they have it.
Sybil and Dot,
Thank you so much for your support. I’ve just joined this group, and it is so great knowing that I’m not experiencing this alone. I have very supportive family and friends, but they don’t really understand. They feel bad for me. Plus I don’t want to seem like a whiner.
I’m usually feeling okay mentally, but sometimes it’s just too much and I get so down. I’m feeling a lot better today though. Thank you for your support and advice. I will take all I can get!
I hope you are both feeling happy and healthy. Happy new year!
Teachgirl, if you need to vent, this is the place! We all have those days that PsA just gets the best of us. I've had a couple days where I had to have a good cry--and then came here looking for support. Usually, the very next day I'm feeling pretty good.
I know what you mean by being around kids and their germs. I've been dodging germs since I started Enbrel. Before today, the ONLY thing I caught (haha) was a 5-week cough. Unfortunately, I'm pretty sure this past hour I started coming down with something and it's coming on fast. A couple of co-workers have had the flu. Our granddaughter (3) had a febrile seizure yesterday when she came down with apparently the flu in a matter of minutes. She was still sick today, but I couldn't resist spending some time with her this afternoon. I had a flu shot in October, but not sure that's been too effective this year. The aches and pains, sore throat and stuffy nose are coming on fast. Yuck! I hope you do better than me avoiding getting sick!
Grandma J,
Venting is so cathartic!! It’s so true that a meltdown does help you move past feeling depressed. After I got diagnosed I was really depressed and saw a therapist for awhile. She told me to stop holding it all in, and if I felt like crying to let it go. I’ve learned that it really does help.
I hope your granddaughter is doing okay. Seizures are really scary. Especially when it’s a little one having one. I’ve been getting a lot of sinus and upper respiratory infections. I think it’s the combo of steroids and biologic. Hopefully when I’m off the steroids (should be by the end of the month), it will stop happening.
Take care of yourself and rest. With a compromised immune system you can go from feeling slightly sick to really sick within a day!
Gentle hugs! Figuring out who we are living with PsA is one of the most difficult things about having PsA. Coming to terms with the roller coaster ride is difficult. It has definitely taught me to absorb every second I can of feeling good and being able (for me, hiking, kayaking, etc), and to appreciate slowing down and enjoying other things life has to offer when I'm not doing well (these days... homeschool projects with my kids, cuddling in bed watching movies, reading some awesome books, and doing fun things with my family (movies, plays, painting pottery, museums, etc.).
Thanks, Teachgirl. I hope once you get off the steroids you have less trouble with upper respiratory infections. I’m delaying my enbrel shot, and so far I’m not stiff so it’s fine. Just coughing as hard as I can to keep clearing out my lungs so this doesn’t turn into pneumonia. Our little granddaughter is doing ok now–unfortunately, I probably caught this from one of the grandkids. I’m seriously considering wearing a mask when I’m around them if they’re sick. I’ve never caught two viruses back to back in my life–and have always had a really strong immune system. So this is very unusual for me. Take care!
Teachgirl21 said:
Grandma J, Venting is so cathartic!! It’s so true that a meltdown does help you move past feeling depressed. After I got diagnosed I was really depressed and saw a therapist for awhile. She told me to stop holding it all in, and if I felt like crying to let it go. I’ve learned that it really does help.
I hope your granddaughter is doing okay. Seizures are really scary. Especially when it’s a little one having one. I’ve been getting a lot of sinus and upper respiratory infections. I think it’s the combo of steroids and biologic. Hopefully when I’m off the steroids (should be by the end of the month), it will stop happening.
Take care of yourself and rest. With a compromised immune system you can go from feeling slightly sick to really sick within a day!
