I know that it’s been a long time since I’ve written, so I figured a quick update was in order.
Let’s see…first of all, I FINALLY got my car back. The first time it went to the shop with a busted radiator and warped head (gasket? The top part of the motor, anyway). I got the car back and the very next day I was stranded on the side of the road again. This time, it was a broken crank shaft. When I got the car back earlier this month I was scared to death that it was going to break down again. I was even scared to go above 60 mph. The other day, however, I had a lot of running around to do, and was all over this city. Now I have a renewed faith that my car really is fixed. I still have to take it to my sister’s house (she lives an hour away) and if I make it back and forth then I’ll know that it’s really fixed. The only thing it needs now is a new battery and I should be getting that tomorrow 🙂 .
Health-wise, things are a little better. My GP started me on a new medication that is supposed to help with my fatigue. So far, it has helped some with my pain (which is really good!) but no so much with the fatigue. The day I had so much running around to do, my “spoons” did last longer than usual, but the fatigue is still keeping me from being able to clean my house. I was really looking forward to that part, because my house needs a good cleaning. I am able to do the basics…wash dishes and wash clothes, but that is about it. I would love to have the energy to de-clutter and give the place a good once over i.e. sweep, mop, dust, ect. I’m just not there yet. The doctor said it might take a couple of weeks for the medicine to get into my bloodstream, and it’s been two weeks, so I think I’m going to call and see if there is any way we can increase the dose. Luckily this medicine is not an amphetamine. I was (am) afraid of that kind of medicine. The one I’m taking is supposed to work the same way as the amphetamines, but without being one. I don’t know the science behind that, but right now I’m just going with it. Like I said, it has helped some with the pain so I think a little tinkering with the dose and it just might work!
Also, the GP was concerned with the fact that I broke my foot from a simple fall, so he ordered a DEXA scan (bone density test). Luckily I don’t have osteoporosis, but I do have bone loss which is called osteopenia. It means that I am at a high risk for fractures and have to be careful not to fall. I am now taking calcium citrate in addition to the high levels of vitamin D, so hopefully I can keep from losing anymore bone mass.
I have had some trouble with brain fog lately. Not severe, but bothersome. My mood has been ok and my anxiety level is down, which is always good. Now that I have my car back I am looking forward to going back to the physical therapist because she was really starting to help. I am having difficulties with my new psychologist. If you remember, the one I was seeing moved out of town and I was refered to a new one. She and I just aren’t hitting it off very well. I have been to two sessions with her and I have left feeling worse than when I arrived. I just received an email back from my previous therapist with the names of two other ones that I can try. I have already checked with insurance to make sure that they are covered and will be making an appointment with one of them soon. I hope that she will be better than the current one.
So, that is about all of my new news. I will try to write more frequently. There are days that as long as I am able to wake up and breathe, that is good enough for me. Hopefully as the medicine begins to work its “magic” and my fatigue wears off a little, I will be more inclined to write a post or two. Maybe even do a little research and write an informative one like I did in the past. If not, well then I hope you don’t mind simply reading about my life with fibromyalgia and adhesions. After all, that is what this blog is all about…letting you see what life is like for me with my diseases.
Keep the good fight going Belle!
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It’s great to hear from you and to know you have been working hard to improve things! It inspires all of us to keep working at it as you do.
Thank you for continuing to share, support, and re-blog us even when you aren’t up to typing- you have stayed supportive in the blogging Spoonie community. Appreciations ❤ ❤
I hope things calm down for you and your life regains some balance and confidence that you are striving toward.
Big soft lavender Spoonie hugs.
abodyofhope
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Thank you for the words of encouragement. Sometimes I feel like I’m writing for no reason, then I remember that if just one person reads and gets some encouragement or feels less lonely in their own battles then I’ve done what I set out to do. Big spoonie hugs right back! 🙂
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Joy, I hope you find a therapist who will be helpful soon. Good for you for trying! May I ask what meds you are taking for pain? I am getting worse and worse- going to see a new neurologist next week. The last one didn’t help much.
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I hope so too. I really miss my old therapist. I know that she will be hard to replace, but I’m trying to stay open minded. For pain, I use the fentanyl pain patch for the round-the-clock pain and I take Percocet for the breakthrough pain. I hope that you like your new neurologist and that everything goes well. I know how hard it is to find a doctor that you can work with as a team. Good luck!
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Glad to hear that things are going pretty good! 🙂
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They are. I talked to my GP’s nurse today and she said that the doctor agreed to increase the dose on the Strattera. So hopefully things will be better very soon!
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Have you ever had and ANA test?
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Probably. I couldn’t tell you for sure because I haven’t yet requested my lab results from my rheumatologist’s office. I do know that the first two times that I went to him, he did bloodworm that tested positive for inflammation, but not for any specific autoimmune disease. He does think that I have an autoimmune issue, just not one that can be tested for yet.
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Blood work*
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Not fun eh? I’ve tested ANA positive but they haven’t found why yet. So far lupus hasn’t shown up and now I’m awaiting a result for Sjögren’s syndrome. Fibro is also autoimmne
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No, not fun at all! This last time they tested they said that if the inflammation levels were still high they were going to start me on a round of low dose chemo. Luckily, when the results came back the inflammation had gone down. God really answered my prayers on that one! I go back to my rheumy next week, so we’ll see what he has to say then, but so far none of the usual markers (for common autoimmune diseases like lupus, etc.) have come back positive.
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Oh wow. I’m glad they haven’t come back positive. My doc has not got me in a “wait and see” I’m a little frustrated…actually can I email you? If so what’s your email again?
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joynpain2blog@gmail.com
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Ty. 🙂
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I emailed you.
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Do you have to have had rheumatic fever in order to have rheumatoid arthritis? Did you have it, Joy?
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I don’t know. I don’t have rheumatoid arthritis nor have I ever had rheumatic fever. I did have scarlet fever when I was a little girl. I don’t know if that affected me in anyway or not.
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When it rains, it pours, as they say. Hang in there.
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I’m hanging! 🙂
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Keep the Faith and I am praying for you.
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Thank you. I appreciate that.
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Hope the meds are helping more and more! Good to hear from you. 🙂
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Oh, OK. So what prompted you to see a rheumatologist? Maybe the scarlet fever did have that effect on you, but my brother had it and he’s OK. Hmmm.
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I was referred to the rheumatologist because of the fibromyalgia.
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I; have SO many questions! 🙂 Just trying to figure out what’s wrong with me.How did you find out you had fibromyalgia? I’m so sorry you’re going through all this.
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When I started writing this blog a year ago, I met many other people who suffer from chronic pain. Some of their stories seemed so similar to my own that it was hard to believe that they had a different illness than I did. That’s when the thought came to me that maybe I had 2 illnesses. So I researched fibromyalgia (since that’s what the majority of them had) and the symptoms were too close to ignore. I asked my GP what he thought about it and he did the tender point test and said that he believed that I did have it, but he never officially diagnosed me with it. Since it is believed to be an autoimmune disorder, I got a referral to the rheumatologist. I told him all of my symptoms (even the things that sounded like they didn’t quite fit in with anything) and he also did the tender point test. He said that based on my symptoms and the results of the tender point test that he thought that I definitely had fibromyalgia and diagnosed me with it (officially). Since then, he has been the doctor in charge of my fibro care and also for the other immune disorder (which we haven’t identified yet). My blood levels kept coming back with high levels of inflammation which indicate an autoimmune disorder, but the tests for specific diagnostic markers have come back negative. The good news is that the inflammation is being controlled for the time being with medication. I hope that I’ve been able to answer some of your questions. You can always email me if you have more questions, or feel free to continue the conversation here.
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Thank you so much, Joy! that’s why I started my blog- to see if I could connect with and learn from others. I’m seeing a new neurologist next week,- the other one did nothing for me! Hope he has some answers.
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I hope so too! Good luck with your appointment. Keep us updated 🙂
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