I feel bad all the time. For years. My knees hurt. My feet hurt. It seems like the pain only increases, it never gets better. And my weight. I can't seem to shake it, no matter what I do. No matter what I try. It feels hopeless. Somedays I wake up and dread putting my feet on the floor. I wince and then stand there for a minute, trying to get my bearings, and then stumble, stiff legged, to the bedroom door, to begin the day. As soon as I can, I find my way back to my chair, my comfortable recliner, with the heated blanket, and every other conceivable comfort around it. I breathe a sigh of relief just to be off my legs. Going to the store has become difficult, unless I can find one of those sit down electric powered carts to roll around in. This girl who used to run for miles, now hates walking. Exercise has become impossible. I feel like I am losing my mobility.
But last week I saw something that gave me pause. I was busy You tube scrolling, as I sometimes do when I'm bored, in my chair, in the middle of the day, when I should be doing other things. It was a video about something called Lipedema.
Lipedema, the video said, is a collagen disorder, in which fat is stored in weird, lumpy ways in the hips, thighs, calves, and sometimes in the upper arms, as well. The face, torso, hands, and feet, are usually spared. Signs and symptoms include, large, out of proportion thighs, and gigantic calves that no boot will ever fit over, lumpy dimples in the thighs and calves, "batwings" under the arms, dry skin on the lower legs, and a "hood" where the ankle and calf meet, the place where the swollen calf meets the normal foot. It looks like you are wearing a cuff over your ankle. The "cuff" can be been seen where the wrist meets the forearm, also, in some people, although fortunately, not in me. Also, an inability to lose weight, no matter how hard you try, and pain, so much pain. They mentioned that small things can cause big hurt. Like your five pound cat jumping on your lap and leaving a bruise. Or a blood pressure cuff. Or a poke. There are nodules under the skin, too. And there is no cure. No matter how much you exercise, it will never, ever go away. You are born with the disease, and you will die with it. It is activated by hormonal changes, such as puberty, pregnancy, and menopause. You can exercise 'til the cows come home. You can lift weights, tone up, run for miles, which incidentally, is quite painful for people with this disease. There are four stages, and as I stared at the screen, I realized I was looking at myself. The swollen legs are caused by inflammation, which invites the fat to come in and take up residence, in weird and lumpy ways. It's ugly. I have been ashamed of my "tree trunk" legs since forever.
Could this be the answer to everything? How could I fix this "incurable" disease without liposuction, which, apparently, is what one of the remedies for this is? Notice I said remedy, and not cure, because even if you get it all removed, and have lovely legs again, it can always return.
I didn't like the other remedies any better. Diet? Yeah, yeah. What else? Compression pants? Say what?
If there is something I hate worse that changing my diet, it's compression pants. I have two or three pairs I wear for the gym, sometimes. I Loathe them.
I clicked off the video and sat in my chair, thinking for awhile.
What if this is true? Have I just stumbled on the answer to everything wrong with me?
I decided to talk to my Dr.
So at my next appointment, I brought it up. Immediately he thought I was talking about Lymphedema, which, while related, is not Lipedema. Lipedema only affects women, while Lymphedema can affect both sexes. Lipedema can turn into Lymphedema, if untreated.
He had no idea what it was. He googled it, and then referred me to another doctor, whom I have yet to see. So as of now I am undiagnosed, but absolutely positive that I have this. Thrown into one of the videos I watched, was a quick reference to EDS, that is Ehler's Danlos Syndrome. I already had suspected I might have this, based on symptoms I have, and also that some of my family members have this. EDS is highly hereditary. When I heard the woman say that many women who have Lipedema also have EDS, I was dumbstruck. I almost fell off my chair.
After I left the Doc's office, I did some more research. And then I decided to do some experiments. Let me try the hated compression pants. Let me try some Keto. For a day. Just a day, no processed foods, And see what happens.
So the next morning I started with cream for my coffee, instead of the usual "sugar free" flavored coffee creamer. Real cream. One piece of "Keto" toast for breakfast. Scrambled eggs, tuna salad for lunch, no bread. Pork chop with salad for dinner. Ranch dressing. I wore the hated compression pants for most of the afternoon, until I could no longer stand them, and ripped them off with relief. I went to bed as normal, that is, in pain. When I woke up, yesterday morning, I opened my eyes, sat up, put my feet on the floor, and stood up. I took a step. It took me a second to realize something was missing. No pain. NO PAIN! I took another step, and another. I walked all the way to the bedroom door with NO PAIN. I couldn't believe it. I ran up and down the stairs. I walked around outside. I smiled all day from ear to ear.
That day, I added some of the store bought cream to my coffee in addition to my homemade stuff. I don't know why I did it. I should have stuck with my own. By evening, the pain had returned. I went to bed hurting and I didn't sleep well. I woke up today in a bad mood. It was not like yesterday. It hurt to walk. I stayed off my feet. I was irritable.
The Mr. took me out to breakfast. I brought my own cream for the coffee, weird as that sounds, because most restaurants don't have sugar free creamer. But when I say "my own" I don't really mean my own, I just grabbed the processed stuff from the fridge because I was in a hurry. Hazelnut. I had two small frittata eggs, with feta and spinach, and a half a piece of white looking toast, and a couple of pieces of fruit. And I hurt all day long. I didn't even get on my new exercise trampoline, which I had enjoyed yesterday. I just didn't feel up to it.
Later in the afternoon, laying lazily around in my recliner, in my "favorite" (Just kidding, there ARE no favorites, I despise them ALL) compression pants, I was "You Tubing" again, and came across a guy reviewing different kinds of keto bread. He mentioned that after eating this "keto" bread, all of which caused glucose spikes, he noticed his knees were hurting. He thought it might be the soybean oil in the breads. They all had it. Say what? Why is there soybean oil in bread? Can that make your knees hurt? Is there soybean oil in the coffee creamer I've been drinking...for YEARS? It so happened that the creamer was right next to my chair, leftover from the Mr.'s last cup of coffee. I grabbed the plastic bottle and grabbed my glasses, and gave the ingredients a read. And there it was. Soy oil in my coffee creamer. Maybe SOY is my problem.
I decided to go to the store. Right now.
I got to the store and went to the oil aisle. Currently at home we have spray canola oil in a can. I thought maybe I would get some olive oil in a can. It's just so convenient. I grabbed the can and looked at the ingredients. And I couldn't believe it! There is soy in canola oil, in the can. I looked at every single oil in a can. All of them have soy. Oh, boy, well then, what do I do? What kind of oil should I use? I remembered one of the videos recommending Avocado oil, and I saw that there. It wasn't cheap. Ugh. I decided not to care about the price. I got home with my groceries, and after putting them away, checked out my pantry to see what else might contain soy. To my shock, I found out, it is in everything. My sugar free bread. My salad dressing. My precious Mayo, that I love so much. My favorite ranch powder that I add to my favorite mayo, to make my favorite ranch dressing. The horseradish for the steak! Literally, the only packaged food I had that had no soy, was the sugar free yogurt I had bought the day before.
Now I was kind of flummoxed, because I had already made myself a salad, and had decided to have a day with no soy, to see if I could get that pain free day back. What was I going to put on it? I perused the fridge, looking for something, anything, that didn't have soy. There was nothing. Every single dressing has soy oil in it. Mayo was out. I was tempted to just use my usual ranch, because salad with no dressing is just....no. But the whole point was zero soy, so I put Satan behind me and carried on.
I remembered that in my youth, I used to make my own mayo. And I had all this avocado oil I had just purchased. So...I made my own mayo. I was going to make my ranch with the new mayo. That was when I discovered that the powdered ranch had soy in it. So I just had some herbed mayo on my salad. It wasn't great, the new oil gave it a weird texture that I just wasn't used to, but it was edible. So we had grilled steak, cooked with butter and avocado oil, salad, The Mr. with store bought Caesar dressing, and me with my homemade mayo, and sugar free yogurt for dessert. I cleaned up the kitchen, and took the dog out, and as I came upstairs and sat down...I realized...I was not in pain. Pain free! By this time last night, I was limping around, shuffling, trying not to bend my knees too much, and so glad for bed time. Tonight, I am going outside to watch the Aurora Borealis, in about 20 minutes, if it comes this far south.
I can't wait to see what tomorrow brings. It's going to be a no soy, no sugar day. I ordered some special extracts to make my own creamer, and tonight I concocted something so delicious, that I can't wait for coffee time tomorrow. I added some brown sugar extract to about a half a large carton of heavy cream, and some cinnamon, vanilla, and some salted caramel coffee syrup (which contains neither sugar, nor soy) , and shook it up good. Not so good that it became whipped cream, but enough to incorporate it all. I didn't add sweetener of any kind. I took a little sip and almost fell over. It is the best I have ever had, hands down, better than anything I have ever bought from the store. I got the idea from a barista I met in New Orleans a couple of weeks ago. I was telling her how much I loved Community Coffee's Mardi Gras King Cake coffee, and she gave me the recipe to make a Mardi Gras coffee syrup. She used real brown sugar, but I knew, as much as I adore brown sugar, I would not be able to use that. Brown sugar, any kind of real sugar, around here, is only used on special occasions. We usually just use Stevia, or Splenda, being that the Mr. is prediabetic.. So I wondered if there was an extract for that, and lo and behold, there is! Turns out, there is an extract for everything! Well, maybe not everything...
So here's hoping tomorrow's coffee will be terrific and that it will be a pain free day.
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