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Sophia3

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Everything posted by Sophia3

  1. red breasted nut hatches!! how fun! I Rarely get those in the yard but i can see better whats passing through, when trees lose their leaves! Ha. We get the white breasted nuthatches regularly..love their nasal voice. They feed a lot.
  2. thank you for the kind words.. Many others take pics better than these! ..I just lose myself the rare times i get out and magical moments happen. 😊
  3. Thanks. Its great watching eagles! And other fun birds.. I use a 2lb Powerzoom Coolpixp950. Not as heavy has a DSLR and big lens that weighs 7 lbs or more! So its doable..i used a small 55-300mm lens for other things. Coolpix zooms to 2000mm max. My upper body has always been weak. Losing myself in nature helps me feel normal for a bit. My luckiest shot..2 winters ago i was at a river's small dam...eagle flew low over me to fish and changed mind..and I got this with Nikon camera and 55-300 lens! no crop.
  4. Thanks. Its great watching eagles! And other fun birds.. I use a 2lb Powerzoom Coolpixp950. Not as heavy has a DSLR and big lens that weighs 7 lbs or more! So its doable..i used a small 55-300mm lens for other things. Coolpix zooms to 2000mm max. My upper body has always been weak. Losing myself in nature helps me feel normal for a bit. from 2 summers ago watching Osprey fish (they dive under water..my reflexes miss some of the action. Eagles fish and if-ten steal from Osprey or they will drop the fish as eagles will win the fight. using DSLR here with only 55-300 lens and then cropped oics..some use 200-500mm or 150-600mm lenses hand held. I am a wimp..but i was down at the rivers edge to get these.
  5. hope you tried some exercises and they helped.
  6. I have fed birds for years but got interested in bald eagles 7 years ago!! then learned about powerzoom camera and was hooked! I used a dslr but my strongest lens is 55-300. Eagles and their nests are often 300 feet away. Need to respect nature ans have learned much! i get out for short walks or drives, but not much in summer hot and wretched muggy dewpoints. some eagles from april 24th..hard to see the one eaglet..so tiny...then 2 still in nest June 9th, almost 1/4 mile away !! June 19th...parents and two newly fledged juveniles just 3 days after leaving the nest❤️ all have left the area now and parents start adding sticks to the nest to do it all over again next season.
  7. I don't know if anybody saw my post about VOR...but I have had POTS since early 90s, dx in 1998 and disabled... Allow me to share my story as I rarely come here anymore or to any support group but this could help somebody.. EDIT if you have Menieres please read this and learn about VOR and gaze stabilization..many are medicated for this but exercises are critical...NOTE if the exercises make you very dizzy, that means you need them and things will get better.. I have had inner ear and balance problems on top of this for over 30 years..(BPPV...everything has long names with what some of us have!)) last August 2021 I got a stomach virus that made me dizzier every time I vomited...and I could not walk to the bathroom....and the dizzy seemed to stay with me...not with just walking or standing but LOOKING at the world..by that I mean I like to photograph birds, especially eagles or osprey..i could not watch birds feed outside my window or the leaves moving on the trees. well it was a busy fishing season for the Osprey and as I tried to follow it through my camera lens I got MOTION sickness feeling, instantly...mild headache mild nausea, felt I might fall over. I was devastated as few people get to witness this bird fishing dives.... Anyway, I saw an "ENT Balance specialist for thi"s...he simply gave me a hearing tests, have some loss in left ear and sent me to Vestibular PT.. told me to take benadryl...sigh....the PT guys got I was dizzy but gave me insane exercises...like sit up 50 times as fast as I can. full blown sit ups..hurt my lower back and I am a small person but also have osteoporosis...not good on my spine. THus I kept reading and NOTHING matched my balance or dizzy surfaces...until I brought it up to a holistic chiropractor (she never crunches bones) she mentioned an eye website where I learned the term "Gaze stabilization exercises" .. then I stumbled onto the VOR system. That was it!! I cancelled the rest of my PT as this woman helped me so very much...for FREE. no email needed, no password she just helps people..I could not believe it. Then there are a few videos online but this woman has 3 exercises... beginners, intermediate and advanced. I started in order..then learned just leaving the house to use my camera and walk was a VOR exercise !! Anyway, read up on it or maybe try this link if I am allowed to post a link..have not been here much in recent years and rules may or may not change..but this is a CRITICAL thing to know for ANYBODY who gets dizzy.. I don't even remember her name but have these links in my email. ha https://www.youtube.com/watch?v=drRwAdjZ644&ab_channel=Movement%26Function
  8. look up VOR and gaze stabilization exercises! I had bad viruse last August.triggered dizziness from vision input...took me forever to figure it out mYSELF when PT did not help. Found videos on youtube! i would get sick from using a camera to zoom in on flying birds.. Ventricular Optic Reflex.
  9. I tested negative for Sjorgren's too but iffy on lupus. I've had dry eye issues for 3 yrs since getting laser surgery to try and "fix narrow angle problem" but that's a long story. After using lots of Tears Naturale Free (no preservatives, and lots of warm compresses for the clogged mebomian glands (sp) I found drinking fresh home made carrot juice to help with dry eye pain and as a bonus dim vision!! I get baby carrots to save standing time and made, first in vitamixer (or you could use strong blender IF you dilute with a cup or 2 of water) I now use a juicer. Please note 1 lb of carrots= a cup straight carrot juice. Due to natural sugar content, I ALWAYS dilute this 2.5 to 3 times. This has helped immensely. I made mistake of wearing water proof mascara on Tgiving and fell asleep without removing well. Eyes bother me ever since. I pitched that type and have not worn eyemakeup since and will not for another month. If you can handle straight carrot juice from juicer with a blood sugar reaction, more power to you. Drink right away or within 12 hrs, Put fresh juice in small mason jar and fill to TOP with no room for air. Put on lid over sink and put in fridge. I have also been told adding a granny smith apple (Tart apples, sweet apples do NOT HELP) helps you to absorb the nutrients in the carrots better. THis also helps my dry mouth a bit. However since I wore nasty mascara and bitter cold, I'm back to using compresses the last 3 days. I also need to make sure to drink a lb of carrot juice a day (Diluted, and divided into 2 or 3 doses throughout the day) Oh, if you use a blender or vitamixer, filter in cheese cloth or even better, a nut milk bag you can get online at Amaz. THis is a problem I could write a book on. I would NOT do the plugs or the pricey restasis as you are covering the problem. If the carrot juice is helping, you will know within a month or two but then you can sustain it. I make sure to drink juice daily but you may be able to skip a couple days a week in warmer or more humid weather. I can not because my night vision worses (Which affects my ability to see INSIDE the house on dark cloudy days or at night) My two cents. Ok a buck and a half! PS Juice made in a masticating juicer will last 48hrs or 72 hours MAX. but you must store in glass jar or bottle with no space between the lid and the carrot juice. I also add a chunk of ginger for spice and digestion...mileage may vary on that! Just get the carrot juice in your first. If you mix carrots with spinach you may not get the same affect. I DO NOT. I have to drink the carrot juice by itself!!
  10. Has anybody mentioned allodynia, where normal touch can feel like pain? I've got this. Tight hugs, or even soft massage hurts like heck !! and brings on fluish symptoms later...course I've also fibromyalgia but allodynia can be more common and many drs are ignorant http://chronicfatigue.about.com/od/glossary/g/allodynia.htm I have never been able to use heavy winter comforters in cold weather. Hurt my toes/feet. I dog sit for some friends and last time I was there I woke up 2 mornings at 5AM feeling like shoulders were sore. The sheets were new, and 100% cotton but heavy, scratchy and noisy! I finally yanked them off after the 3rd AM and put softer ones on and slept much better. It is a shame more doctors are not aware of this condition because they should be. I've had this junk for years so guess I am shocked when doctors don't make patients aware but we are not really surprised, are we? :-/
  11. I've had a goiter for years, as well....probably almost 10. All tests normal...just had 3rd ultrasound...always in normal range but recently I had horrible lump in throat sensation again that almost felt like mild choking...so I emailed my dr and had another ultrasound and slew of blood work as well as the TSH Free3 or whatever the other ones are....I see my Dr next week...I have not seen him in months.....odd how this can all be "normal" ...he is a 50 minutes away or I would've seen him when I felt the enlargement. It even made me hoarse this time if I talked or raised my voice (like to yell pleasantries to neighbors across the street briefly!) It creeped me out but like usual, just faded away. It would be nice if the test told us more of what was going on...I've had nodules for years, sometimes more than others. My autonomic dr is an endocrinologist so he checks things frequently.
  12. has nothing to do with bladder spasms. Simply a vagus nerve response common in MANY dysautonomia patients. with some it's tachycardia, others syncope (fainting) or pre-syncope. hope this helps. http://en.wikipedia.org/wiki/Micturition_syncope
  13. Cordelia, thanks Bella, I stated earlier I do NOT HAVE SMART phone or ipod or any of that modern junk. Thus I need a BASIC wrist HR monitor that is dependable I need something EASY to read due to bad vision and wear STRONG reading glasses! ps My HOUSE mate has an ipad but I find it most difficult to type on touchpad.
  14. I want to HR monitor but if you wear a chest with a beep, can you shut it off? I don't want to be using things at the Y & call attention to myself. I'm thinking maybe a watch monitor if those are accurate. Would like one UNDER $100 even better if around $50. I'm concerned with volume on the beeping too. anybody have any tips or links of what to buy? p.s. I want something self contained. I do not use a smart phone. My house mate has an ipad but their stuff is $270. OUTRAGE. I dont' work and he lost his job :-(
  15. Been using DDAVP for 10 yrs. Life changing. keeps me from being dehydated. Use as needed. never had water deprivation test to check ADH levels..Dr said too dangerous. So we went by clinical symptoms & I no longer lose 5lbs a day from EXCESS urination. Been fine for me. Good luck.
  16. was dx with CFS in 86 when it was called Perpetual Adult Mono by am Immunologist I saw..then they changed name to CFS as it was more than EBV..then Johns Hopkins found the ANS connection (as had the late Dr. Streeten for years but didn't know Dr. David Bell was studing CFS pts with O.I.) Anyway, sleep centers found I have alpha delta sleep disorder which means very LITTLE refreshing sleep...so vicious circle for decades. Very complicated this CFS umbrella just like ANS issues. But any documentation in tests is always a good thing though many many SERIOUS isssues are dx by exclusion of other things...sigh
  17. Sandy shell. this is the best GF Pasta (was on the diet for awhile & folks that are GF really love this brand) http://www.tinkyada.com/ Also there are good Pamela's cookies that are great though pricy and all sorts of GF mixes easily found. I made a great GF chocolate cake recipe, too. That said GF products go stale quickly so wrap & freeze accordingly. http://www.food.com/recipe/one-bowl-gluten-free-chocolate-cake-209764 (*I got gas & pains from xanthum gum, which is hard to find info on online for this. In store bought versions, no issues. Something about the kind I bought & used to heads up to sensitivity on that) For bad pain & bloating after meals that nobody can figure out, try GF diet for a couple of months. If you are Celiac or have Gut issues, you can see results right away. My neices beau did after only THREE DAYS when his siblings tested positive & he thought he had gall bladder issues..he was very skinny always. Is able to be normal weight now! For pain, neurological or other things, GF diet takes longer. But bloating gets in the way of sex for many reasons. So now, to bring the topic back to sex..sorry for the temporary digression but nobody should have to give up fave foods GF.p.s. Do yourself a favor though & wait a few weeks before trying GF desserts to give yourself space from reg flour deal! p.s.s. If your doctor can not determine what your pain is during sex, look for another doctor. I even sent out letters to many local docs to find my ANS Dr 15 yrs ago. It's ok to Fire your Drs! Just don't burn bridges. If we get emotional, they tend to say painful sex or sexual areas are mental !@#$%? but I digressed, again. sorry *Focus, Soph. Focus*
  18. I'm CONFUSED. IT says Midodrine in the title but the post/link do not mention it. Please ENLIGHTEN me. And is this drug OFF the market again. I don't currently use it but LOVED.IT!
  19. Yes it was MYLAN that was horrible. I needed half a pill & it crumbled in the scored area so much, Kroger ALLOWED me to return it & just pay diff for name brand. Anyway, we guess Shire changed their mind & quit making w/o alerting the media Glad I never counted on it to function but many do . . .
  20. Sorry you can no longer get Proamatine. I've not come here much in last several months but am confused. I thought many posted here that Shire was STILL making this drug due to our calls/emails & such. Is this NOT TRUE?? No more proamatine. Can somebody update people? I was thinking of asking for a script but not if there IS not medicine. Generics were CRAP..especially the one made by that drug company in Morgantown W Va . forget the name
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