Showing posts with label MCTD. Show all posts
Showing posts with label MCTD. Show all posts
Saturday, February 26, 2022
Wednesday, January 2, 2019
Article - Things You Should NOT Say To Someone With MCTD
I laughed, I cried, I hated that so many of these were said to me by my own doctors!
Read the article Things You Should NOT Say To Someone With MCTD on the Cook for Me Baby web site. The photos that accompany the article are great.
Ignore the recipe section, though. Unfortunately, that's the diet most recommended by doctors, especially rheumatologists, for people with auto-immune issues like mine.
Read the article Things You Should NOT Say To Someone With MCTD on the Cook for Me Baby web site. The photos that accompany the article are great.
Ignore the recipe section, though. Unfortunately, that's the diet most recommended by doctors, especially rheumatologists, for people with auto-immune issues like mine.
Wednesday, March 1, 2017
March Is Auto-Immune Disease Awareness Month
In honor of Auto-Immune Disease Awareness Month I'll once again post the link to the Mixed Connective Tissue Disease Foundation site.
This is the crap disease I have to live with daily.
I refuse to take the chemotherapy or steroid drugs that are usually handed out like jellybeans by rheumatologists, so I stick to the WFPB no added SOS food plan and eliminate foods that cause me pain, like gluten and (sob) potatoes in all forms. At least I'm not reacting too badly to nightshades right now so I can still have tomatoes a few times a week.
I know eventually, as my disease progresses, I'll have to go on some of those strong medications, chemical concoctions whose side effects are worse than the disease(s) it tries to control, but if doing without my beloved spuds not only lets me sleep at night with a little less pain but keeps me one more day away from that poison, so be it. Once again let me say, maybe Dr. Fuhrman was right.
Tuesday, February 28, 2017
Thursday, March 24, 2016
March is Auto-Immune Disease Awareness Month
What is autoimmune disease? What is connective tissue disease?
March is autoimmune disease awareness month. So what does that mean? Watch my video to find out!
Posted by For Prevention's Sake, Barbara Grubbs, NP on Thursday, March 24, 2016
Wednesday, November 4, 2015
Brain Fog Strikes Again!
It's been 32 years since I felt well. Many tests, and a handful of doctors, over the decades finally came up with diagnoses of not only hypothyroid (untreated at least 10 years after the first abnormal TSH) and Degenerative Disc Disease, but a fairly rare auto-immune disorder called Mixed Connective Tissue Disease. That alone explained all my overwhelming fatigue, the polymyalgia, the debilitating joint and bone pains, maybe even my stress cardiomyopathy/Takotsubo Syndrome from 2009. Heck, even my lack of weight loss during those years I was on near starvation level calorie diets!
But most important to this particular blog post, it explained the brain fog. It all started 32 when I was pregnant, and was self-diagnosed as CFS a few years later, "self" because my primary care doctors "didn't believe in it" as a real disease. They were of the generation that referred to it as "Yuppie Flu" and dismissed my symptoms because 1) I had a baby at home and 2) I was fat. I was glad to get the diagnosis of MCTD because it took over 30 years, but I showed them I really *was* sick!
Anyway, brain fog, for those of you who haven't had the pleasure of experiencing it, makes you lose time, makes it hard to string a coherent sentence together, can cause you to space out during conversations, and at times, makes you look like a dog who suddenly sees a squirrel. I can be driving around with my husband carrying on a real conversation and in the middle of a sentence, sometimes in the middle of a word, break away with another thought on a completely different subject. I'm sure some of you noticed that in my writings, too.Anyway (See what I mean?), the other day I decided to go off-menu and instead of making what I had planned, I wanted to treat my husband to one of his favorite meals, Chef AJ's Red Lentil Chili, because he was having a rough day at the home office. I always have the ingredients for it on hand so it would be a snap to make up. I was extremely tired that day, so figured getting all this in the Instant Pot and setting the timer would give me time to take a little nap before dinner.
Potatoes got washed, poked, and popped into the microwave, timer set to start cooking them a half hour before dinner time so they would have a chance to cool a little before we sat down to eat them.
Gathered the chili ingredients and started blending all the wet ones. Got the lentils rinsed and into the pot. Turned off the blender. Added all the spices. Put the lid on, set the IP.
Headed into the bedroom to grab a book. Hubby joined me after he finished up his work and we watched another episode of our favorite Brit-Com, Waiting for God. My husband tells me so often I'm just like Diana, one of the main characters. It's not a compliment! LOL
Dinner time. I open the IP and immediately notice something is "off." The chili takes up only half the amount of room it normally does, and it's brownish, not the usual pinkish-red. It also smells different than usual. Not bad, just different.
We decide to try it, so serve and break up the baked potatoes and ladle the chili over it. Tastes great. Hubby has seconds.
Dinner is over. I start putting leftovers away - potatoes into a zipbag for waffle potatoes in the future and the chili into a glass Pyrex. I walk over to the refrigerator to put them in and then I see it.
I spy the Ninja blender with the blended tomatoes, peppers, onions and garlic.
Darn!! OK, not the exact word I used, but this is a PG rated blog.
I told my husband I'll just put it away and make a new batch of chili for the weekend. I turn to get a container to put it in and when I turned back, saw him pouring about 2 cups of it into his bowl and then grab some bread to dunk!
Now the expletives really start flying, because now I don't have enough of the sauce for another batch of chili! All I get out of him was "Oops."
"I JUST SAID I was going to use the sauce, WHY the **** did you DO that?!?!!"
His reply was: "Well, it just tastes so good I didn't want it to go to waste."
I repeated the above line, adding a few more WHY's and possibly a few more ****'s, too.
At least I can salvage what's left and use it over the weekend on our weekly pasta meal.
At least my fatigue and brain fog went away for a while. Now I was WIDE awake and mentally alert.
Thursday, October 17, 2013
Back to Doctor Bashing
Those who followed my VeganMoFo posts for the first half of the month might remember the day I mentioned my doctor's appointment to get some lab results. I wrote a long post about being overwhelmed when I finally got all the results.
Well, I did have some blood drawn to repeat some of those labs and got the results last Thursday.
The good news is that the ESR and CRP were well within normal limits, so no excessive inflammation that would indicate lupus, many other auto-immune diseases, or rampaging cardiovascular disease.
My total cholesterol was down to 176 - much better but still not in the heart-attack proof range. VLDL was up a little, but took me just one point over the normal reference range.
My triglycerides level is what shocked me - 237! They went UP even after eating from the 2 heart-healthy books for the 2 weeks prior to the blood draw and strict McDougall/Esselstyn since July 8th when my husband first told me of his chest pains! WTF?!?!?!
Then I looked back over my journal entries to see exactly what I was eating, and saw that for more than half of the entries in the first half of the month I had flour products, and what wasn't mentioned in those entries were the (whole wheat, unsalted) pretzels I was eating most nights. One day I had a load of fruit as a night time snack, and most mornings I had raisins or dried dates in my oatmeal. Most days I was also having a few ounces of POM juice, as recommended by Dr. Fuhrman in his autoimmune protocols, and once or twice some fruit-based salad dressing.
Between the flour and fruits I can see why the trigs were up.
My doc doesn't believe too much fruit has anything to do with triglycerides, that it's only saturated fats that raise it, "anything you can buy in a bakery, including whole wheat bread" is bad, everything else is fine, (here it comes) in moderation." (sigh)
My doctor went into immediate pill-pusher mode and had the student doc start looking up meds to lower triglycerides and wrote a prescription for Lovaza, a purified fish oil pill to raise Omega-3's, even though I told him I'm not going to take it, especially when the web site say it's for trigs over 500, and mine are less than half that. I can take more crushed flax seed and chia seeds to raise Omega 3's, like Dr. Esselstyn says to do.
He told me I'm eating too many carbs on my food plan, to switch to the "heart healthy" Mediterranean diet, to replace all those carbs with protein foods.
I looked him right in the eye and said: "You want me to stop eating my whole food plant based, no sugar-oil-salt food plan and start taking fish oil, eat fish, chicken and beef, and start pouring olive oil over everything so my triglycerides go down? What do you think my total cholesterol is going to do if I do that?" He and the student just shrugged.
I also reminded him that many people with MCTD eventually wind up with kidney failure and on dialysis, and he wants me to load up on kidney-killing animal protein? He shrugged again.
He told me if I don't want to take the Lovaza, at least take fish oil pills from another source, but make sure they're fresh. I shrugged. Now I know he's just not listening.
I told him I'm going to cut the rest of the dried fruit out my diet and stick to only 1 serving a day of either blueberries or apples, and he shrugged.
I told him I'll cut out the processed carbs - the whole wheat flour and cornmeal - and he shrugged again, telling me I should also cut out the beans and potatoes, so I shrugged again.
He didn't even ask if I saw the rheumatologist yet to start treatment for my MCTD, the one thing my husband was most concerned about. I had to come right out and ask how my ESR and CRP results were. He shrugged and said they're fine, then went back to telling me how horrible my diet is.
So here I am, debating whether or not to shut him up and take Lovaza (probably not), other fish oil pills (ditto), grab a bottle of the EPA-DHA or OmegaPure that Dr. Fuhrman sells, or just go with other comments by Fuhrman and Esselstyn, that as long as one is following the whole foods plant based/plant perfect food plan, don't worry about the trigs, because they're not going to be normal until all the excess weight is off, especially if you already have a lot of belly fat, which I most certainly do.
Dr. McD has a few tips, besides cutting down on fruit and eliminating flour products (meaning, go on MWLP instead of the regular/heart healthy program) that includes increasing exercise and eating an extra quarter cup of oat bran, and a few cloves of garlic every day.
So, no to Lovaza or fish oil, yes to more oat bran, garlic (Yum! Really!) and ground flax (I have to remember to drink more water now), no to flour products (Goodbye, pizza and pasta - sniff) and try increase my aerobic exercise a bit without causing any more pain to my already achy joints and muscles (Now attibutable to MCTD and not my fat and degenerative arthritis).
I'm now 60 years old - time to nip this in the bud so I can live to see 70 and beyond.
Well, I did have some blood drawn to repeat some of those labs and got the results last Thursday.
The good news is that the ESR and CRP were well within normal limits, so no excessive inflammation that would indicate lupus, many other auto-immune diseases, or rampaging cardiovascular disease.
My total cholesterol was down to 176 - much better but still not in the heart-attack proof range. VLDL was up a little, but took me just one point over the normal reference range.
My triglycerides level is what shocked me - 237! They went UP even after eating from the 2 heart-healthy books for the 2 weeks prior to the blood draw and strict McDougall/Esselstyn since July 8th when my husband first told me of his chest pains! WTF?!?!?!
Then I looked back over my journal entries to see exactly what I was eating, and saw that for more than half of the entries in the first half of the month I had flour products, and what wasn't mentioned in those entries were the (whole wheat, unsalted) pretzels I was eating most nights. One day I had a load of fruit as a night time snack, and most mornings I had raisins or dried dates in my oatmeal. Most days I was also having a few ounces of POM juice, as recommended by Dr. Fuhrman in his autoimmune protocols, and once or twice some fruit-based salad dressing.
Between the flour and fruits I can see why the trigs were up.
My doc doesn't believe too much fruit has anything to do with triglycerides, that it's only saturated fats that raise it, "anything you can buy in a bakery, including whole wheat bread" is bad, everything else is fine, (here it comes) in moderation." (sigh)
My doctor went into immediate pill-pusher mode and had the student doc start looking up meds to lower triglycerides and wrote a prescription for Lovaza, a purified fish oil pill to raise Omega-3's, even though I told him I'm not going to take it, especially when the web site say it's for trigs over 500, and mine are less than half that. I can take more crushed flax seed and chia seeds to raise Omega 3's, like Dr. Esselstyn says to do.
He told me I'm eating too many carbs on my food plan, to switch to the "heart healthy" Mediterranean diet, to replace all those carbs with protein foods.
I looked him right in the eye and said: "You want me to stop eating my whole food plant based, no sugar-oil-salt food plan and start taking fish oil, eat fish, chicken and beef, and start pouring olive oil over everything so my triglycerides go down? What do you think my total cholesterol is going to do if I do that?" He and the student just shrugged.
I also reminded him that many people with MCTD eventually wind up with kidney failure and on dialysis, and he wants me to load up on kidney-killing animal protein? He shrugged again.
He told me if I don't want to take the Lovaza, at least take fish oil pills from another source, but make sure they're fresh. I shrugged. Now I know he's just not listening.
I told him I'm going to cut the rest of the dried fruit out my diet and stick to only 1 serving a day of either blueberries or apples, and he shrugged.
I told him I'll cut out the processed carbs - the whole wheat flour and cornmeal - and he shrugged again, telling me I should also cut out the beans and potatoes, so I shrugged again.
He didn't even ask if I saw the rheumatologist yet to start treatment for my MCTD, the one thing my husband was most concerned about. I had to come right out and ask how my ESR and CRP results were. He shrugged and said they're fine, then went back to telling me how horrible my diet is.
So here I am, debating whether or not to shut him up and take Lovaza (probably not), other fish oil pills (ditto), grab a bottle of the EPA-DHA or OmegaPure that Dr. Fuhrman sells, or just go with other comments by Fuhrman and Esselstyn, that as long as one is following the whole foods plant based/plant perfect food plan, don't worry about the trigs, because they're not going to be normal until all the excess weight is off, especially if you already have a lot of belly fat, which I most certainly do.
Dr. McD has a few tips, besides cutting down on fruit and eliminating flour products (meaning, go on MWLP instead of the regular/heart healthy program) that includes increasing exercise and eating an extra quarter cup of oat bran, and a few cloves of garlic every day.
So, no to Lovaza or fish oil, yes to more oat bran, garlic (Yum! Really!) and ground flax (I have to remember to drink more water now), no to flour products (Goodbye, pizza and pasta - sniff) and try increase my aerobic exercise a bit without causing any more pain to my already achy joints and muscles (Now attibutable to MCTD and not my fat and degenerative arthritis).
I'm now 60 years old - time to nip this in the bud so I can live to see 70 and beyond.
Sunday, September 22, 2013
VeganMoFo Day 22 - Overwhelmed
I'm overwhelmed with a refrigerator full of leftovers and fruit, so I'm not cooking today.
I'm overwhelmed having my husband home all day, every day. At least he's starting to do things by himself, getting out of the house alone, giving me a few minutes of blissful peace.
I'm overwhelmed dealing with Explanation of Benefits from the insurance company and bills from doctors, labs, and hospitals, both my husband's and my own.
I'm overwhelmed at how darn hard it is to get lab results from blood work drawn back in July sent to my doctor's office.
I'm overwhelmed at the results of that lab work, showing not only did my cholesterol and triglycerides go up over the spring and early summer, but I now have a diagnosis of Mixed Connective Tissue Disease, a fairly rare autoimmune disorder. I just had even more lab work done, and after I see my primary care doc again in another week I'll have to bring all these lab tests with me to a rheumatologist and find out not only what my disease is but what to do about it.
I'm overwhelmed doing my own research on this disease, on its effect on the body, and especially on the medications used to treat the symptoms (There's no cure). I'm overwhelmed finding out that the majority of my complaints for the past 30 years, the same complaints my PCP blamed on my weight, are actually the results of having this disease, even the rare heart condition I got in 2009. Everything I read about it says it appears when a woman is in her 20's to 30's, and here I am, suffering for 30 years and about to turn 60 in less than a month, and just being diagnosed now. It's one of the hazards of being fat - everything is blamed on weight! I 'm overwhelmed thinking of all the damage that has already been done to my body because of medical prejudice in treating fat patients.
One thing I'm sure of is that I do NOT want to be on things like prednisone and methotrexate for the rest of my life and want to look into dietary treatment, like Dr. McDougall and Dr. Fuhrman suggest but rheumatologists advise against.
We're taking today as a day to decompress, to do nothing except go grocery shopping, reading the Sunday papers, and watching crap on television. We're way behind in our bad movie viewing (SyFy Channel movies, Roger Corman horror movies, the Tremors series, etc.) so we'll do some catching up this afternoon. We may even take a nap, something we haven't had the time to do lately, with all the doctors, lab and lawyer appointments and hubby's rehab schedule. One thing I'm not going to do today is read any medical/dietary books, visit any research sites on the Internet, or, as stated above, cook. Today is a total drop out/turn off day for both of us. See you tomorrow!
I'm overwhelmed having my husband home all day, every day. At least he's starting to do things by himself, getting out of the house alone, giving me a few minutes of blissful peace.
I'm overwhelmed dealing with Explanation of Benefits from the insurance company and bills from doctors, labs, and hospitals, both my husband's and my own.
I'm overwhelmed at how darn hard it is to get lab results from blood work drawn back in July sent to my doctor's office.
I'm overwhelmed at the results of that lab work, showing not only did my cholesterol and triglycerides go up over the spring and early summer, but I now have a diagnosis of Mixed Connective Tissue Disease, a fairly rare autoimmune disorder. I just had even more lab work done, and after I see my primary care doc again in another week I'll have to bring all these lab tests with me to a rheumatologist and find out not only what my disease is but what to do about it.
I'm overwhelmed doing my own research on this disease, on its effect on the body, and especially on the medications used to treat the symptoms (There's no cure). I'm overwhelmed finding out that the majority of my complaints for the past 30 years, the same complaints my PCP blamed on my weight, are actually the results of having this disease, even the rare heart condition I got in 2009. Everything I read about it says it appears when a woman is in her 20's to 30's, and here I am, suffering for 30 years and about to turn 60 in less than a month, and just being diagnosed now. It's one of the hazards of being fat - everything is blamed on weight! I 'm overwhelmed thinking of all the damage that has already been done to my body because of medical prejudice in treating fat patients.
One thing I'm sure of is that I do NOT want to be on things like prednisone and methotrexate for the rest of my life and want to look into dietary treatment, like Dr. McDougall and Dr. Fuhrman suggest but rheumatologists advise against.
We're taking today as a day to decompress, to do nothing except go grocery shopping, reading the Sunday papers, and watching crap on television. We're way behind in our bad movie viewing (SyFy Channel movies, Roger Corman horror movies, the Tremors series, etc.) so we'll do some catching up this afternoon. We may even take a nap, something we haven't had the time to do lately, with all the doctors, lab and lawyer appointments and hubby's rehab schedule. One thing I'm not going to do today is read any medical/dietary books, visit any research sites on the Internet, or, as stated above, cook. Today is a total drop out/turn off day for both of us. See you tomorrow!
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