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About stacdliw

  • Rank
    Advanced Member
  • Birthday 06/09/1953

Profile Information

  • Gender
  • Location
    Louisville, Ky.
  • Interests
    University of Kentucky sports fan

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  1. I really enjoyed reading your blog. I read all of your entries and found them well-written and interesting. They were also quite humorous as well and found myself chuckling often. I'll try to click on your blog in the future!
  2. So happy that your wedding day was a success and you were able to enjoy it to the fullest! Your dress was absolutely georgeous! I hope you recover quickly so you can enjoy your honeymoon!!
  3. I know that many of us here suffer from migraines and I just wanted to share my experience with the Botox procedure. It has been a godsend! Prior to having Botox, I was having at least 4-6 migraines per week, most of those moderate to severe. Relpax was my best friend and my pharmacist was alaramed at the amount of Relpax I was taking per month. When my migraine specialist first applied to the insurance company for approval, I was denied-- I think because I didn't meet the strict guidelines for the number of 4+ hour migraines needed per month (see link below). My migraine specialist didn'
  4. I have a severe neuropathic pain disorder of the upper gastric area, and most recently, of the colon. For the past 18 months, my Pain Specialist has been slowly increasing my dosage of Neurotin, so as to cause no adverse side effects. My pain is so severe that within the last 2 months, my Neurotin has been increased to 2400mg daily, but I'm noticing side effects which I didn't have never had before. Nothing serious, just an increase in nasal stuffiness, ear stuffiness, ear noises( tinnitus), and inconsistent blurring of my vision. Though I am near-sighted and can read text fine, I am someti
  5. Congratulations! I can only imagine the overwhelming sense of relief that you must feel!
  6. I could swing for a short time, but if I swung too high, I remember getting really nauseous. I never could tumble-- made me sick every time. Never could ride the ride the rides that went round and round in 360degrees-- that would definitely bring on a nausea attack. However, roller coasters were my passion. I remember my brother and I riding the The Beast in the front seat at Kings Island when I was in my mid-40ies and we were one of the oldest on the coaster. I wouldn't dare to that now-- I'm sure I would be vomiting before we made it up the first hill!
  7. Worst--- No doubt, up to 4 hours after waking. Can't say morning because I sleep until noon ; the brain fog is the worst during this time period-- word finding is awful, forming complete sentences is a struggle and spelling correctly, forget it!; seems to take forever to wake up; most symptomatic as well BEST-- 7pm -3am most alert during this period with the least symptoms
  8. Anything that is healthy for "normal" people is a BIG "NO-NO" for me! Fresh fruits and veggies- FORGET IT! Whole wheat, oats--- NEVER!! MEAT-- very little, maybe some chicken. I've suffered with gastroparesis for 8 years and take 6 tablets of Domperidone daily. My diet is a mess. Some days I feel like eating, others I nibble like a bird. Some days my digestive system works, other days I get nauseous even looking at food. Such is life!
  9. My daughter is getting married on May 19th and I want to get some color, especially on my face, since I'm so pale from being sick. However, I'm afraid that a tanning bed, with its heat, will trigger my POTS symptoms since hot baths and the summer heat does so. Has anyone had any experience with tanning beds and its effect on their POTS symptoms? Thanks, Bev
  10. Gradual onset, with slow improvement over years and now with good days and bad days.
  11. I have recently subscribed to a WebMD blog called "A Different Normal: Living With A Chronic Condition" I subscribed because for the past year I have been suffering with a moderate/severe idiopathic upper epigastric pain disorder right under my sternum that is brought on my drinking liquids. In most instances, the pain first occurs within 2 hours of me awakening and can last up to 2 hours, despite 20mg of oxycodone. After the pain has subsided, minor pain still exists and intensifies if I stand. In most instances, the pain will return within 5-6 hours and the routine will repeat itself, l
  12. When I was first diagnosed 2 years ago, I was diagnosed with small fiber neuropathy in my feet and ankles by the QSART. The QSART was repeated last October and I no longer have small fiber neuropathy in my feet, but now I have it in my hands. This is not a normal progression with improvement in one area and progressive neuropathy in another. It's referred to as "patchy neuropathy." I have gastroparesis which my GI believes is due to neuropathy. For the past 18 months, I have suffered from an idiopathic moderate/severe upper epigastric pain that my GI believes is "probably" due to neuropath
  13. Just some words of wisdom that I got from my GI when I was going through the diagnosis period and scared to death because of all the scary possibilities that I had read on the internet that somewhat correlated with my symptoms. He told me that the internet was great for research after a diagnosis has been made by a doctor, but a patient should never research their symptoms so as to make their own diagnosis. He's right, of course, the possibilities will only scare you. I ended up having gastroparesis and small bowl dysmobility, but I had convinced myself through self diagnosis that I had sto
  14. It's not just you. I'm 58 and use to have 3 really close friends, one of which was job-sharing partner for 15 years and the other my sister-in-law who was my roommate in college. At first, my friends use to call to check on me, but as the weeks turned into months and the months turned into years, they rarely call now. In a way, I can't blame them. I don't have much to add to the conversation because I'm on disability so I don't work and I have so many different illnesses that I'm literally bedridden most days of the week. I don't want to bore them with my health issues, but right now, tha
  15. I, too, was diagnosed with fibro and chronic fatigue 16 years ago. I presently take Cymbalta twice daily and it has definitely helped with the pain. When my insurance was Express Scripts, they first tried to deny coverage of Cymbalta; however, because Cymbalta is approved for fibro pain and there is no generic for the Cymbalta, they begrudingly approved it. As to what I have found helpful during flare-ups: Tramadol is helpful and cheap. I also bought a Thermaphore Maxheat heating pad that has velcro which allows you to strap it around your leg-- it feels wonderful on an aching leg. I really
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