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Hope for 2005


ginger
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Hi all--

It's been such a long time since I"ve posted. I've had a chance on several occassions to "spy" and check-up on everyone and learn from your valuable conversations. I tried writing a few weeks back and my lovely four-pawed assistant decided the back button would be nice to sit on... wiped the whole thing out. Was too tired to re-do at the time and then the holidays!

I've got some good news, bad news and lots of questions--I started making a list of them by the computer so I wouldn't forget--but lots of HOPE. There's too many questions for one post, so I"ll post one every now and then.

First... hooray for the bracelets. I got my first 5 and they're all out on wrists! My daughter, who's in 4th grade, where's one with pride, tells her friends about it and her teachers. She even took a few of the cards and handed them to teachers.

Good news: I GOT IN! To the Mayo Autonomic Lab, that is, beginning February 7. It took lots of referrals, perseverance, patience and well, nagging, but I'm in. I'm set for Dr. Fealey (Dr. Low's associate--Dr. Low's schedule packed so I gave them ok for Dr. Fealey) and another specialist to help address my neurogenic bladder and other pelvic issues as result of spinal cord trauma. So, more horrific tests, but hey, maybe some big picture answers this time.

Bad news: Symptoms have been pretty awful the last couple months. Adding lots of digestive/swallowing issues to the mix. Oh, yeah. THe really bad part is that now my other neurological/spinal issues are cranking up again. New numb/tingly spots, more sciatic again, neck, lower back, and things are well, umm, falling out you might say in the pelvic region. Yes, nerve damage is quite wonderful. I hear many of you with back and neck issues. Such a complicated area of medicine.

Oh, that reminds me, anyone want to buy my new-only-worn-45 minutes ski boots and skis? They are good brand.... they were last year's Christmas present before my ski accident (helping my son learn, not even in Colorado, but Wisconsin) and before POTS/OH stuff.

Bad news: Another sleep study for me in November. Yikes! I had been diagnosed with obstructive sleep apnea a few years ago and have been using CPAP with pressure 5 until that last study. They cranked the pressure up to 13, more than double, to stop the apneas. I did, however, this time have a little REM sleep. Ernie, I didn't have any first time, either. You're hooked up to so much stuff, I can't figure out how they ever get good studies. How can we sleep like that!? Anyway, tried the new pressure (highest I've heard of is about 20) and nearly blew up and floated away. Somehow the air being forced down my throat entered both my digestive system AND my body cavity. My shoulders hurt terrible when I stood up (worse than after my laparoscopy). And I created quite a green fog in our bedroom, if you get my drift. So, backed me off right away to 9. Better, but still get too much air in digestive system--if I didn't have enough gas already! And really dries out my nose, even with humidified air. So, what a mess.

One of the swallowing incidents was terrible recently. I don't know if I caught a pill wrong in the esophagus/burned a hole or if I"m getting GERD. I drank Ensure for the first time in my life for nutrition--geez! Tried Prevacid, but too much diahrea with that.

Have been on and off two statins for cholesterol. Side effects with both including calf cramping. Not good. Without exercise I shoot up to 250-300 every time. Have to see what doc wants to try next.

To sum up the last several months, hit a deer and totaled van, daughter drove golf ball through largest double pane window in house (look out Tiger), and lots of illness throughout the house including strep and intestinal virus. 2005 has got to be better!

Still working as much as I can, but tough. Still Florinef and Lopressor (half dose) among others. Compression hose, salt and Gatorade now staple. Best thing seems to be just keep on smiling, plugging away, keeping good network of friends and family--I'm so fortunate in this department. Including this forum!

Thanks for the chance to give you a LONG update, ok, well, let me vent. Have a blessed Christmas and joy-filled 2005!

Ginger

So, that's my story the past few months.

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Ginger, good to see you back on the board :)

Also, I'm really pleased to hear that all your peseverance has paid off with a spot at Mayo. I sure do hope that they find some answers for you there.

Nina

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Ginger, good to hear you are able to post some. Sorry for all the bad news in your life the past few months but hey, at least you also had some good news to report. BTW, my husband who is an excellent golfer put a ball through one of our windows last year!!

Glad you got into Mayo. The one thing you can know for sure about a trip to Mayo is that you WILL get tested from head to toe and all regions in between! I hope they can find out how to improve your current situation. I don't think I know where you live....just wondering, is this a long trip for you? Driving or flying?

Aren't you proud of your daughter for wanting to wear your bracelet and sharing with all her friends and teachers just how special here Mom is? I think that is wonderful.

Take it easy Ginger. Easier said than done, I know. I have lots of company arriving tomorrow and I keep reminding myself, to pace my activity.

Geneva

P.S. I am trying to imagine what it would be like to ski with POTS!! Just the thought makes me dizzy!!!

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Hi Ginger,

Congradulation for getting in at Mayo. I know (more I've heard) how difficult it is to get in so I figured that it was like a full time job to succeed.

I am sorry you are having more physical issues to deal with. I hope Mayo can help you find solutions.

You made me laught when you mentionned that you were so full of air that you were floating around in the room. I could just imagine you floating around in zero gravity.

I know some people can sleep just about everywhere. I think we have more problems sleeping there because we already have difficulty sleeping at home so being elsewhere hooked to machines amplifies the problem.

I hope nobody got injured in your van accident (beside the deer!).

Ernie

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