Nancy
Your Replies
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October 11, 2006 at 6:51 pm
It’s beautiful! Mid 80’s and low humidity in Houston! Fall is trying so hard to get here! 😀
October 11, 2006 at 6:49 pmI like today because the humidity is low outside (I live in Houston 🙂 )and I’m happy to be alive.
October 11, 2006 at 6:45 pmTilt <---> Wilt
August 26, 2006 at 7:52 pmI have vague recollections of my cardiologist doing an echo on me. Later, when I returned from La-La Land, my sister told me that my heart went crazy and they were watching me like a hawk. After a few days, everything calmed down. I am on Toprol and Coumadin for it now.
August 26, 2006 at 7:44 pmKountze, TX
August 3, 2006 at 12:47 amI’ve been taking it for two weeks now and it seems to be working. I’m not having as many “flashes” and the few I do have are minimal in heat and sweat. I’m pretty excited and I hope this works forever! Yippee!
July 20, 2006 at 12:10 pmSaw my doctor and showed her the article and she gave me a prescription for gabapentin. My insurance covers it 100% but charges $60 for Neurontin so I went with the generic. I took Neurontin in the past but was still on my former employer’s insurance and they only charged $20. I just started so I don’t think there’s been much of a difference but I’ll give it a few weeks. This is my only hope for any “hormone replacement therapy” as I have had all the bad things that they warn you about being on the pill. I have had heart attacks (yes, plural), a stroke and I have deep vein thrombosis (blood clots) in my legs. I am also a kidney transplant recipient. I haven’t been on the pill since GBS but anything with hormones is out of the question.
She’s starting me off at 300 mgs/day but wants me to call her after 3 weeks to discuss how I feel. She said if I feel there is a difference, we’ll just keep adjusting it until we get it right. 😉
July 12, 2006 at 8:56 amThanks for the responses. I’ve also noticed that when I’m “havin’ a flash” that where I have neuropathy, the nerve pain feels like a million red hot pokers. 😮 Getting old is the pits and I’m just in my late 40’s!
July 11, 2006 at 7:07 pmI chose a plan that had no gap and no deductible. The premium is a pinch higher each month but it’s worth every cent to not have to contend with paying big prescription bills for a period of time.
As for the government employees you have to look forward to dealing with, prepare for every person who is a brick shy of a full load. My last encounter with Medicare had me on the phone for 3 1/2 hours (yes, hours) with NO resolution. Wanna know the burning question I was asking? :confused: Ready? Seated? What dollar amounts went towards my 2006 deductible? She couldn’t figure it out but was very nice about it. She kept saying, “I’m sorry this is taking so long. I’m sorry I can’t figure this out.” I asked if there was someone else that could help me and was told that ALL the supervisors had left for the day. Yea, right. This all started because they applied too much towards my deductible. To date—still not resolved but at least I got their attention and my call got logged into the computer. Best wishes!! 😀
Take care,
July 5, 2006 at 11:56 amI signed up in December of 2005 with coverage beginning on January 1, 2006 with Humana. I used the Medciare.gov tool to choose the best plan for me based on the medications I take and the pharmacy I prefer. Before Part D, I was eligible to receive many of my medications free from the manufacturers. Unfortunately, I receive just a pinch too much from Social Security to qualify for their premium reimbursement program. But, Part D is worth the premium each month for the peace of mind it offers me knowing I have a way to get the medications I require.
July 5, 2006 at 11:28 amHi-
I’m so glad you found this forum and thank you for sharing your story. I am approaching my 5 year hell-iversary and am thankful to be around to tell the tales of what I experienced. Unfortunately, I am on disability due to GBS and many other medical problems I encountered. My fatigue level is pretty high but I have learned to live with it. I was on Remeron for awhile also but no longer require any drugs for depression.
The folks here have enlightened me on more issues and topics than anything my neuro has ever been able to tell me. In the past, I have taken info from this site to my doc and she has since taken time to look at this site. She’s very impressed with our knowledge and insight!
We’re all here for each other to encourage and commiserate – which ever is needed! 🙂
Take care,
June 3, 2006 at 10:36 amMy best suggestion is to find a hospital that is affliated with a church. Get away from the big corporate hospitals. I have found that the hospitals that are religion based have happier employees.
June 1, 2006 at 10:42 pmAbsolutely appalling treatment. I am on Medicare, not Medicaid, and have always been treated promptly and properly. I do not know about the hospitals in your area but I go to a hospital that is owned by the Episcopal diocese in Houston. I was even the recipient of some charity funds when I was in the hospital 5 times in 1 year and could not afford the Medicare fee for each time. We also have 2 county hospitals here that outstanding. I hope you can find a better place to receive care. Having GBS is hard enough without being treated like a scab. What happened to human nature and preservation? I guess the almighty dollar is more important to those folks than proper care of their fellow man.
June 1, 2006 at 9:41 pmI’m so sorry to hear of the problems but so glad that your mom was there to be his noisy advocate. When I was in ICU, the hospital “requested” that my sister stay in there all day when I wasn’t sedated because I was not a very good patient and I would only do something when she told me to (yes, she’s older! 🙂 ). I know this time is hard as you don’t know the outcome. My sister kept a daily journal of what went on each day. Everything. Times of doctor visits. Name and time every nurse, therapist, aide, treatment, test, priest, janitor, visitor, whoever came into my room. What my personality was like at the time. How long I slept. What I ate. She said she started at first just to keep track of all of the activity straight but said later it became a good distraction for her. She didn’t give it to me until I had been out of the hospital for over a year. I was glad and shocked all at the same time to read the hell I’d been through. Just keep in mind that GBS doesn’t go away as fast as it shows up. Two weeks of decline leading to paralysis took over three years to feel I was almost 80% back to normal.
Peace of the Lord,
May 30, 2006 at 7:29 pmHi-
Welcome to our little community. Sorry you had to search us out but we will all be able to give you our different insights to GBS. You may have read that in addition to GBS standing for Guillain-Barre Syndrome we also refer to it Getting Better Slowly.
I was in the hospital for 3 ½ months and was in ICU for 1 month. From what you posted, it appears that your dad is being treated in a similar protocol to mine except I never had a tracheotomy or respirator. It is very frustrating for the family because there are no concrete answers that the medical professionals can give you. Each GBS victim is very different. I was sedated most of the time I was in ICU because I was in so much pain from the raw nerves. I am almost 5 years out and feel pretty good most of the time. I walk unassisted but my stamina is the pits.
I can only imagine how hard it is for you and your family right now with your dad in the hospital and your Alzheimer’s afflicted grandfather. My best advice is to ask for help. People by nature want to help and you just have to ask and I’m sure you’ll have a number of people ready to help. If you’re affiliated with a religious community, let them know if you need help. Keep coming here and doing your research and make sure your mom and you are loud advocates for your dad since he can’t speak for himself right now.
Take care,
