Another Bump in the Road

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I’m not in a good mood today. I’m not sure when it went bad, but I think it was when I received a letter from the endocrinologist saying that the male factor hormones that they tested were all in the normal range. Elevated androgens are a sign of polycystic ovarian syndrome (PCOS). I still have every symptom of the disease, including the most important one of the highly cystic ovaries.

I suppose I could have had a normal result because I’m on the birth control pill and that could be helping to regulate those hormones, but it doesn’t change the rest of my symptoms. So what’s really bothering me? I’m afraid to walk into that office next Tuesday and hear that there is nothing wrong, and that they just don’t have a reason for the weight gain and other symptoms.

I gave up hope that I was going to hear that I don’t have rheumatoid arthritis weeks ago. When I self-diagnosed hypothyroid, I thought the muscle and joint pain might be caused by that. The endo was clear when he shot that theory down. I suppose the newest plan is to hear what he has to say on Tuesday, and then going back to the rheumatologist to start plaquenil again before it gets really cold and my joints get worse.

In the past week my hip, legs and feet have been stiff and painful. My hands have been experiences the neuropathy symptoms with the painful pins and needless and numbness. Who knew numbness would be painful? Believe me, it is! The colder weather also brings out my Raynaud’s, which just adds to the pain.

I’m frustrated tonight because I am still here with no answers and now I’ve already decided that the endo is going to say there is nothing wrong and to exercise more. I haven’t really been hungry at all lately. I’ve hardly had a snack and my meals have all been healthy. In my depression today, I opened the damn bag of Halloween candy and had 4 KitKats. Do I regret it? No! They were delicious.

The highlight of my day was at a clinic meeting for my son at school. They set up monthly clinics to stay on top of his progress after they fucked up on his IEP (Individualized Education Program) last year. He receives special education services for dyslexia and comprehension issues. My son can be a big pain in the ass when it comes to getting his services, mostly because he’s so afraid of looking different or standing out. I do understand that, but I’m trying to explain the harder he works now with comprehension and reading strategies, the less time overall he’ll need to go to resource.

Anyway, what a wonderful meeting. Each of his teachers wrote up really nice things about what a good student, and hard worker he is. Both is science teacher and his literacy teacher noted that he does struggle with writing, but both said he is working really hard and seeing them during his free periods for extra help. It was one of those meetings that you just can’t help but smile. I know school isn’t easy for my son, but at one point this semester he had straight As. He now has a B in Spanish, and that’s completely fine. He’s working his butt off, and I think (I hope) he’s also proud of himself.

I have a lot to be happy about, but I’m just not tonight. I’m blue and sad. Not sad enough to cry about anything, but with the exception of my kids, this just isn’t the life I thought I’d have. And, I don’t know whether it’s best to accept that I now have limitations, or try and find help to work through them.

I don’t talk about it with friends. I used to talk about it and my insecurities about it with my friend (the one who is no longer a friend). He was actually a good listener for a long time. The thing is, it went both ways as I was always a good listener to him…and he had no shortage of drama. When he told me that he didn’t want to hear that I didn’t feel well or was in pain anymore, it really hit me. Even my friends don’t get it. Of course, I have way more polite friends than him–many of whom ask how I’m doing and really want to know. Ok, maybe not many, but definitely a few. That one conversation though, made me re-examine how much I was talking about it.

I never thought that I was talking about it 24/7, but when he asked, I would tell him if I was in pain, etc. But, because someone pointed out that I was talking about it too much, I think I shut down. I don’t want to be Debbie Downer. I love to laugh and have fun. I smile and laugh more with my kids than I do anywhere else. I truly enjoy them (even when they are beasts). I thought there was a balance, and now I’m not so sure. I don’t bring it up unless people ask, except on this blog, of course. This is my place to vent and talk about my autoimmune issues and if anyone is annoyed they can simply stop reading.

I just wondered if anyone else has had a friend or family member tell them they are too focused on their illness. I always joke that I’m a hermit and not a people-person, and things like that are the reason why. I don’t want to open up and be shut down by someone.

I hope you all are having a pain free night!

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