Archive for the Fibromyalgia category
January 9th, 2007
Since the beginning of December, I’ve been going twice a week to physical therapy in this warm water pool to treat my fibromyalgia. This week I’m switching to once a week on land and once a week in the water. I’m going to miss the comfort of not sweating during my aerobic workout. 
However, an hour in warm water always makes me a little “rushed” afterward…just saying.
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Tags: project365, photoaday, oneaday, photo blogging, pxn8, physical therapy, water therapy, fibromyalgia
December 27th, 2006
I like today’s Fibromyalgia Tip of the Day : Making Lists:
Make a list of things that you enjoy doing. Days when you are out of sorts and bored, this list can come in handy. It sounds silly to think that you might forget what you enjoy, but bad days can be heavy with “fibrofog” and so reminder lists are always helpful.
I think everyone, not just fibro sufferers could stand to put this tip into use. When you’re out of sorts and having a bad day, even
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Tags: fibromyalgia, depression
December 25th, 2006
So, the nutritionists say the poultry is a bad thing for me because it’s pro-inflammatory. They told me to eat more soy and seafood. Seafood didn’t seem right for Christmas dinner, but there’s something in the health food stores called “Tofurky.” It’s kind of fun to say but I was a little wary of trying it. Feaux vegetarian meats have been a kind of scary thing, though they’ve been getting better the last 15 years as “vegetarianism” has hit the modern grocery store instead of just in hidden health food stores.
Anyway, so this Christmas, I decided to go for the whole Tofurky affair. I found a whole dinner at Wild Oats. According to the box:
A Delicious Vegetarian Feast
Feast Includes a Tender, Juicy Stuffed Tofu Roast, 8 Delicious Cranberry-Apple, Potato Dumplings, Rich Tofurky “Giblet” & Mushroom Gravy, and Our Signature Tofurky Jurky Wishstix
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Tags: Tofurky, vegetarian, Christmas, dinner, nutrition, fibromyalgia, cooking
December 20th, 2006
One of the big things I’ve had to try to cope with in the last year in coming to terms with whether or not I had fibromyalgia was the fact that I simply wasn’t capable of doing everything I wanted to do. I felt like I was “talking big” and not getting anything done and I’ve felt as though people, some people in particular (N2 for one and maybe even PW) were judging me. I’ve wondered how many people have considered me just plain lazy. My father, I think. He’s even commented that he thinks
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Tags: fibromyalgia, goal setting
November 29th, 2006
Real heroes are men who fall and fail and are flawed, but win out in the end because they’ve stayed true to their ideals and beliefs and commitments.
– Kevin Costner
Tags: Quote of the Day
November 29th, 2006
I spent Monday focusing on my stomach.
Well, sort of.
Monday morning, I met with two GPs, who specialize in alternative medicine, specifically nutrition. Rather, I was referred to them to get counsellings on what changes to make to my nutritional diet to decrease inflammation in my body since I can no longer take anti-inflammatory drugs due to my kidney disease. I guess I kind of expected to get a list of foods to avoid and a list of foods to eat and a sample diet and have that be it, but that’s not really how it went.
First, I’m being referred to
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Tags: Wellness, alternative medicine, nutrition, acupuncture, IgAN, fibromyalgia, anti-inflammatory diet
November 15th, 2006
Well, I saw my GP on Monday. You know, to follow up on all of those new diagnoses and to get my ambien dosage increased per the Rhuemy and get the water PT referral, etc. She and I discussed my concern with not being able to take anti-inflammatory meds anymore what with the whole kidney disease thing and especially since I was still in pain with the whole fibromyalgia thing. In particular, my left elbow, right knee and lower back have been really bothersome and are only getting worse with the packing and the move.
Well, of course she asked me
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Tags: alternative medicine, anti-inflammatory diet, wellness, fibromyalgia
November 14th, 2006
No, seriously.
So, the Rheumy wants me into one of those water aerobic exercise classes and I got the GP to get me a referral for a water PT thing, but it’s not at my hospital so probably my insurance won’t pay for the whole thing. The catch is that the water PT has to be done in a heated pool and there are only so many of those around.
The real catch is that I don’t own a bathing suit and I swore I wouldn’t buy another after moving up here to Maine. Now it’s mid- to late November. Where the
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Tags: bathing suit, fibromyalgia
November 2nd, 2006
It’s official. It’s a relief to know that I have two diagnoses and two treatment plans now.
The kidney biopsy results apparently led to both diagnoses.
IgA Nephropathy
It’s an autoimmune kidney disease, as I said. The Nephrologist said the prognosis is very good. We have caught it very early — though probably I had it 4 years ago when I saw that Nephrologist who didn’t really run any tests and just dismissed me so I could have caught it even sooner. My kidney functions are still excellent and don’t appear to be damaged yet. She is changing
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Tags: IgAN, fibromyalgia, GI specialist, kidney biopsy, SED rate, rheumatologist, nephrologist, blood pressure, wellness
October 11th, 2006
I have that on the best authority. Honest.
The Rheumy’s nurse called and said the MRI came back that my brain looks to be functioning normal. – So, no, BJ, no “Brain Cloud”. :P (Kudo’s to anyone who gets the movie reference and posts it in the comments.)
That doesn’t explain the “brainfog” of course, but it does at least eliminate things like tumors and brain injuries and big brain malfunctions.
In the meantime, today is a particularly difficult day for me. I woke up with my legs hurting like I’d been running all night. My arms ached too. As the day has
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Tags: MRI of the brain, fatigue, muscle pain
October 6th, 2006
Okie…I feel like I’ve been through the ringer the last 36 hours, but I at least have a final-ish schedule for all of those tests and procedures that seemed jumbled up into one week or as my boss put it — “Looks like your taking a full sampling of all that [our hospital] has to offer…” (I’m going to be visiting all three of the big complexes.)
Anyway, for those who are keeping track (and I hope someone is for me :P), the brain MRI is on Monday morning, the CT of the lung/chest is next Friday afternoon, and they
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Tags: wellness, kidney biopsy, CT Scan of the Lung w/ contrast, MRI of the brain, Nag, personal assistant, diagnosis
October 2nd, 2006
I have just spent 10 days with family, which means that pretty much except when I was asleep, I was interacting with people without a break.
What that really means is that there were witnesses to my increasing “brainfog” as I call it.
It’s been kind of easy to hide it at work by simply staying mostly in my cubicle and since I don’t actually have a social life, I haven’t really had to face it outside of work.
But the final straw for me came yesterday when I nearly started crying in frustration when it took me a few minutes to describe
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Tags: MRI of the brain, brainfog, wellness
September 8th, 2006
Well, my latest lab work came back still showing something abnormal with my kidneys. I’m going back over to the hospital this afternoon to get stuck some more; all of these tests have to do with autoimmune illnesses related to the kidneys apparently and most of these results won’t be back for a few weeks.
The Rheumy wants me to see a Kidney specialist and I’ve asked him to consult with my GP as she was also discussing this — I’d like to have one Kidney specialist and not two in the mix. Since he’s not in today, that
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Tags: wellness, autoimmune kidney disease, rheumatologist, CT Scan, lung cancer
August 31st, 2006
So, I saw my GP yesterday afternoon. We went over the concerns of the Rheumy with the blood in the urine; plus I got a copy of the results of some of my lab work that the Rheumy did at his office. I don’t understand much of it, but I have a copy of it now. (By the way, it says I have 16 of 18 of the trigger points for myalgia but my alarming Sed rate is what keeps me from the fibromyalgia diagnosis…that’s what’s written on the paperwork.)
Anyway, one of the things that the Rheumy
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Tags: wellness, Takayasu's Arteritis, fibromyalgia, autoimmune kidney disease, IgA Nephropathy, chest cold
August 23rd, 2006
I just got back from the rheumatologist follow up visit (after having had to sit through 2 hours of a budget meeting this morning).
Apparently, the Lupus blood test came back negative, but my Sed rate is still high at 90. He also doesn’t think it’s Sjögren’s Syndrome based on the blood work and my tear generation test.
So, now he wants to do some studies of my blood vessels to see if I have Takayasu’s Arthritis, which is a really rare disease where your blood vessels shrink. Apparently normally it shows up in Asian women, but he
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Tags: Takayasu's Arteritis, rheumatologist, CAT Scan, Lupus, Sjögren's Syndrome, ESR, cancer, emphysema
August 2nd, 2006
I saw the Rheumatologist yesterday finally. Very nice guy. I feel comfortable with him and I think he’ll get to the root of the matter, whatever it is. He’s not one to jump to a diagnosis, which I like, and he doesn’t ignore what I’m telling him either.
I had to do some extra tests while I was there.
There was one for people who complain about dry eyes to see how much natural tears you do produce which was very weird and irritating. They actually put paper strips in your eyes and you close your eyes for five minutes and then
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Tags: Rheumatology, Takayasu's Arteritis, Sjögren's Syndrome, Lupus, Lupus, ESR, CRP, fibromyalgia
July 17th, 2006
Just wanted to follow up from Friday. The Endoscopy went well. The doctor said I have no ulcers. Didn’t look like there was anything to be concerned about in my innerds. Basically I don’t think he saw anything that could be causing the acid reflux at the level I’ve been having it.
The drugs have made me a little loopy. My experience has been that it takes me a bit for them to get completely out of my system. I’ll be slipping up with words and forgetting what I was saying and all sorts of
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Tags: endoscopy
July 12th, 2006
Thanks to my GP’s office, I’m now persona non grata in a number of doctors offices and clinics about town. Unfortunately, they’re doctors and clinics I need to see and visit.
When I left, my GP had left instructions with her staff to set up referral appointments with a Rhematoid Physician and an Imaging Clinic — one for a consultation and one for an ultrasound. The note on the paperwork said that all appointments should be made after July 11th. (You know, because I’d be out of the country.)
So, they made them all for before July 11th.
I
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Tags: wellness, FUBAR
July 12th, 2006
Well, I’m home. I feel changed in some way by the experience. Someone asked me to pick one thing from my trip that I liked best but I can’t really pick just one thing in England or Edinburgh that I felt was more inspiring than anything else. I think I expected when I left to be most touched by Stonehenge but I was awestruck by the simple beauty of the seemingly unmarred landscape and the ancient architecture intermingling with hints of something seventies retro but rarely anything more harshly modern.
Anyway, more on that as I finish sorting
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Tags: UK, Keen Venice H2, Crocs, Stonehenge, shoes
