Hello all! Hope everyone is doing well overall, and managing their struggles. This sure is a day to day journey...
I keep reading over and over the "Mind the Gap" blog post in the Newbies Guide to PSA. It's helping to get me through, because man oh man am I ever in the gap right now! I've been on Sulfasalazine for 3.5 weeks now, and have been upping the dose slowly. I finally make it to the max dose on Saturday, but for the last week little things have been starting to pop up that may or may not be a reaction to the Sulfa. And I hate it. I don't know what's going on in my body, and not only am I not feeling better physically, but emotionally and mentally I am a wreck. Went to a walk in earlier this week because the glands in my neck were slightly swollen but at the time no other symptoms. Doc looked me over and said they weren't overly swollen and I looked good otherwise so that I was maybe just fighting something off. Then two days later I started to get a low grade fever...never over 100, but hovering in the 99's and I just feel warm. Again...could be completely unrelated and I'm just fearing the meds too much, but it's making me crazy and I'm starting to get frustrated! I have an appt with my doc on Tuesday and will go to a walk in again if I need to. At this point I just have no idea if I'm getting myself worked up for nothing, or if my body is negatively reacting to the Sulfa. But I would imagine more would be going on than just a low grade fever? ARGH! It really drives me nuts not totally knowing what is happening with my body. Can anyone tell that I'm a bit of a control freak? LOL.
Anyway, I'm just really hoping to get through this gap...but I'm having a really hard time at the moment. Anyone have any similar experiences/frustrations to share?
Yes, Kit_Kat, I’m a bit of a control freak myself, and I can relate. I’m glad that “Mind the Gap” is helping a bit while you’re struggling with this. It’s a really difficult time.
You will get through the gap. But wouldn’t it be nice to know how long it’s going to be before you start to get better? Wouldn’t it be wonderful if your rheum could say someting like “You’re going to feel worse for about a month, then gradually better for three months. After six months you’ll be 80% normal.” You could deal with that and plan your life around it. But alas, it doesn’t work that way. Honestly, I don’t know how rheumatologists do the work they do. Everyone’s in pain, and you have no idea what or how long it’s going to take to get them better. I once asked a nice young rheumatology resident why she chose this specialty, with all its mysteries and uncertainties. You know what she said? “The patients are nice.” Is that a consolation? No, I didn’t think so, but I hope it made you smile.
Sorry to hear you’re having a rough stretch. I ran this type of low grade fever before I got the disease under control and it definitely can still happen if I’m flaring. That particular issue is not a med side effect. The swollen glands . . . Good idea to get them checked out.
Thanks Stoney! I did get my glands checked earlier in the week and the doc said I was likely just fighting something off. They have since returned to normal size. It's a relief to hear that the fever could actually be from the disease itself and nothing to do with the meds. Just taking this all day by day...
Stoney said:
Sorry to hear you're having a rough stretch. I ran this type of low grade fever before I got the disease under control and it definitely can still happen if I'm flaring. That particular issue is not a med side effect. The swollen glands . . . Good idea to get them checked out.
Thank you for the reply Seenie! Wow, the things you write in both the Mind the Gap post, and the post you linked to below...it's like I could have written them. There is such a great amount of comfort knowing that I'm not going completely crazy, and that others have gone through what I'm going through now. I wonder if there is a certain amount of the grieving process that one must go through after being diagnosed. If the stages are in fact the same, then I'm hovering somewhere around anger and depression...hopefully someday soon I'll hit acceptance, but I'm not there yet. Just need to give myself a break and let myself feel what I need to feel. In the meantime, thank you for being so supportive :)
Seenie said:
Yes, Kit_Kat, I'm a bit of a control freak myself, and I can relate. I'm glad that "Mind the Gap" is helping a bit while you're struggling with this. It's a really difficult time.
You will get through the gap. But wouldn't it be nice to know how long it's going to be before you start to get better? Wouldn't it be wonderful if your rheum could say someting like "You're going to feel worse for about a month, then gradually better for three months. After six months you'll be 80% normal." You could deal with that and plan your life around it. But alas, it doesn't work that way. Honestly, I don't know how rheumatologists do the work they do. Everyone's in pain, and you have no idea what or how long it's going to take to get them better. I once asked a nice young rheumatology resident why she chose this specialty, with all its mysteries and uncertainties. You know what she said? "The patients are nice." Is that a consolation? No, I didn't think so, but I hope it made you smile.
Kit Kat, Yes I think there is a lot of grieving and depression that the newly diagnosed go through. I know I did! I finally had the diagnoses I was chasing for years and years..... but..... I was so deeply depressed. I had my answers but what did that mean for my life? My hubs life, our son? The sadder I became the worse my symptoms became. I felt like nothing would ever change. I couldn't walk very far and and a hard time playing with my son. I felt useless and afraid. It comes and goes. It really depends on my pain levels and the amount of sunshine outside!
I know this beginning process is hard, very hard. I'm only a year ahead of you. Hope you find some piece of mind and relief soon.
