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About ScottS

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    Gardening. Yoga. Music. Art. Browsing eBay for vintage stereo equipment I have no intention of buying.

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  1. I've experienced gastroparesis since day one of when I first experienced POTS symptoms (many, many years ago). Yes, diet - and to some degree exercise - has made all the difference for me. First thing in the morning I drink a cup of home made broth made from soup and marrow beef and/or chicken bones with a full scoop of hydrolyzed collagen added for the extra bit (10 grams worth) of protein. I also drink a cup of warm pineapple juice mixed with lemon and ginger. A few months back I added a slice of toast with butter. (Though note, too much fat nauseates me.) I then see how things are going before eating a breakfast consisting of fresh (not canned) pineapple, a banana and a cup of mandarin oranges or papaya. I'll sometimes add a piece of cheddar cheese or low fat string cheese for the added protein and to help limit the fruit sugar rush. I supplement with a serving of freeze dried bovine (cow) liver capsules. (6 capsules equals one ounce of liver.) I then wait things out and go about my day. If I experience nausea or OI (as sometimes happens), I simply sit down and rest until the feeling passes. For lunch I eat 2 scrambled whole eggs and a slice of toast. I also drink 12 ounces of a mix of pineapple juice and orange juice with a tablespoon of pressed ginger juice added. My other meal consists of soup with one to two ounces of well cooked grass fed beef or free range chicken added for the extra protein. (A favorite is a liverwurst sausage product from US Wellness Meats. It consists of 50% beef trim and 50% beef organ meats and is not only highly nutritious but surprisingly tasty.) On occasion I'll also take in a 4th meal consisting of cooked (steamed) vegetables. (Carrots, beets, spinach are favorites.) For snacks I allow myself a fresh apple or some other fresh fruit. I try to limit my consumption of sugary treats though I will indulge in the occasional Oreo or homemade cookie. Milk and milk related foods are problematic though a half cup of whole milk (again with a cookie or two) is tolerable. I've managed to stay healthy with this diet for the past 12 years. I work full time and also teach yoga and Qi Gung and have a daily yoga and cardio (stationary bike riding) exercise routine. Twice yearly I undergo a full blood workup and I've yet to encounter a single essential nutrient deficiency. (I'm 6'3" tall and weigh 208 pounds, btw.) Now, I'm certainly not saying claiming that my (admittedly quite boring) diet is a cure all. Still, perhaps one small element might help you.
  2. I too have had poor man's tilt table tests and not felt faint while experiencing only a little in the way of either tachycardia or off blood pressure responses. Which is curious as I passed out (hard) half the way through both of my full blown TTTs. Both times, approximately 20 minutes in, my heart rate spiked to the low 150s. I then passed out and within half a minute or so my HR dropped back down to the high 40s, low 50s. So I wouldn't put too much faith into what either of those two doctors who had you tested via the poor man's method said. Stephen Hawking had amyotrophic lateral sclerosis. What you're describing - your symptoms - doesn't match up at all with that disease. My best advice is that you continue researching. Keeping a daily (sometimes hourly) diary noting both how you are feeling and what you are experiencing, and how those feelings (and experiences) have changed (from earlier in the day) can help too. If gastroparesis is still an issue, be sure to note not only what you have eaten but the amounts. Take note of patterns as (at least in my experience) gastro events can be cyclical. Try to stay hydrated. When nauseated or feeling that crap gastro "having the life squeezed out of you" sensation - what, for me, feels like a 500 pound Sumo wrestler sitting on my gut while pressing the bulk of his weight against my diaphragm and then throwing the occasional punch at my heart - a cup of warm salty broth can help. Take care to not become de-conditioned. Stay active while respecting obvious limits. Exercise as is appropriate for you if and when you can. Don't give up or give in. Things will get better.
  3. Ah yes, that seasick (swaying to and fro) feeling is all too familiar to me. I too tend to experience it when OI is having its way. My triggers include having had a bad or rough night's sleep and having done too much (been on my feet) for too long the day before. Deep breathing (via my YQi practice) can help settle things as too can hydrating, especially when combined with a cup of broth.
  4. Allergies, no - and I've been put through all manner of tests. MCAS, yes. Curiously, the mast cell stuff is wholly unpredictable. I'll go weeks and weeks without a single occurrence and then, out of the blue, an otherwise unexplainable rash will show up (primarily on my hands, less frequently on my calves and shins or inner groin) and my throat will thicken and swell and etc. (And blah, blah, blah!) I am also quite sensitive to variations in both temperature and humidity. While I can take some dry heat, heat combined with more than moderate levels of humidity wipes me out and even the least bit of extended exposure to cold can ruin me.
  5. Please see: https://medium.com/cbd-origin/what-is-cbd-bioavailability-and-why-does-it-matter-69d9a2e37e6c I take CBD sublingually via flavorless tinctures. Prior to that I tried taking it orally via gummies, lozenges and capsules. Of the lot, only tinctures made any noticeable difference. Note: I also take the tinctures via the buccal route (where the tincture is applied between the gums and the inner lining of the cheek in the buccal pouch). Of the two methods, buccal is somewhat more effective than sublingual and sublingual is generally easier to do (not to mention more convenient, especially when on the go).
  6. Autumn has long been when I've struggled the most with an excess of flares (and the odd full on attack). Mid September through to November is especially bad. Good to see that I'm not alone. (Well, not really.)
  7. I take CBD (daily) in tincture form sublingually before bed, after exercising and whenever I'm starting to feel like the gastroparesis I often have to deal with is getting out of control. Been there, experienced that. It's a godawful feeling. If I catch things quick enough - before they start to build up and get out of control - CBD can help there too. Beyond that there's Ativan. (Which I hate and only take as an absolute last resort.)
  8. Since I can only be upright for so long at any given time I grow a lot of stuff in fabric pots (and also in easily accessed raised beds). Thank goodness for carpet installers. Without them, I wonder would those heavy duty knee pads they wear (and which I too find so useful) would have ever been invented. Most years I set aside half the total grape production (I have several other vines of a couple of different varieties) for both juicing and wine making. The bugger is I really can't (and shouldn't) drink any of the vino. At least not so long as things stay as they are. Still, I'm ever hopeful that in the future things will change for the better.
  9. I'm on day 5 of the flu. It's been I don't know how long since I last had to deal with one. This latest version hasn't struck at me in any special way. It's been the usual aches, pains, coughing, sneezing, wheezing, head aching, blah, blah, blah. Curiously though, I have noted that my issues with fibro (which can sometimes be just shy of debilitating) have been significantly fewer in both number and intensity. How weird is that that having the flu, in a way, actually makes me feel better??!!
  10. Excellent! And what a funny plant it is with it's red celery like stalks and big elephant leaves (when full on). My eldest daughter has commented that it looks like something from the age of the dinosaurs. Combined with strawberries (des fraises) it makes for an excellent pie though I prefer it with raspberries fruit compote style. Rhubarb is something of an old world fruit. (Actually, it's a vegetable. No matter what that one New York court declared in 1947.) For those who've never eaten it, it has a flavor unto itself. Tart but not altogether sour it tastes like, well, rhubarb. An aside: My next door neighbor has confessed to, on occasion, making off with a stalk or two without my knowing. (I don't mind. I have 5 mature plants and he's a good neighbor.) Curiously, he's never tried cooking it. He just enjoys eating the raw stalks!
  11. ...what plant this is just now popping its head out of a section of my garden's still cold, still winter earth? And don't you just love it when come Springtime all you have to do is scrape away the leftover wintered over muck to reveal what you planted last year (or years before) in all its coming (and tasty flavored, if in a somewhat old-timey way) glory? Hint: what's growing here is not often available at food stores and is sometimes combined with des fraises.)
  12. What will you be tending to in your upcoming spring garden?
  13. Attached are pics of one of my 20 year old grapevines that I recently pruned back in anticipation of the coming spring and summer growing season. (There in the background of pic 2 is my dear friend Sadie, she of the labradoodle persuasion.) The variety of grape is Himrod. Generally thought of as a premium fresh/table, juice and raisin grape, it also makes for a wonderfully, sort of Muscatel style wine that I unfortunately can't drink but can take the occasional sip of. (It's consistently very tasty, dry, moderately fruity and with a hint of warm honey.) The style of pruning is called cane. The layout of these vines is somewhat unusual in that they have three arms. (Or, in grapevine terms, "cordons". The thick stump of wood at the base of the vine is the trunk.) When pruning a grapevine cane style, one cuts back (cuts off) up to 90% of the previous year's growth, leaving just a few canes. The canes are the much thinner, much lighter colored stick looking things growing out of the cordons/arms. Have a closer look and you'll note that every so and so inches there are little bump looking things on the canes. (See pic 4 for a closeup of one.) These bump things are actually buds that come mid-May will start to open up and not long after that begin to develop into entire new (hopefully fruit producing) canes. Pic 3 illustrates what a "renewal spur" looks like. A renewal spur has anywhere from one to five buds that will develop into new canes for next years crop. When pruning grapes one must always plan ahead. I took Pic 5 on the 12th of July last year. As you can see, the berries still had a ways to go (about 2 months) before they were ready for picking. Last year, the two Himrod vines alone produced a grand total of 38 pounds of grapes!
  14. Best as I can figure, there are two advantages in using a commercially available ORS product. (ORS = Oral Rehydration Salts) 1. The World Health Organization (WHO) formula (developed in tandem with UNICEF, primarily for the treatment of persons - especially children under the age of five - afflicted with cholera) has a proven track record as a less invasive alternative to intravenous (IV) fluid replacement. 2. Convenience - which, as you plainly recognize, comes at a price. My ORS product of choice is the "Liquid IV" product in the lemon lime flavor. At $1.35 per "shot" (when purchased in the bulk 64 count size) it's pricey, so I use it only when the wide variety of more affordable alternatives are either not readily available or altogether not practical to consume at the time. Alternatives to an ORS product include a cup of warm soup broth, salted diluted fruit juice, 16 ounces of water following munching on a handful of Cheetos and half a banana. And etc. Addendum: Those just starting out on their life journey with POTS should know that ORS products are in no way cure-alls. With POTS, unfortunately, there are no cure-alls. You just deal with things, symptoms and how your own unique version of POTS affects you via what can sometimes feel like an endless and ever-changing series of life style choices and self well care routines (and adaptations) that may not always work for you.
  15. A wonderfully concise description of the autonomic nervous system, its overall structure and function. Thank you for this.
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