Dawg Tired

Well, Merrill, here we go. 4 years ago my hubbie decided we needed to take a trip to Seattle for a belated honeymoon. Hubbie was in a plane crash 14 years ago and sustained a head injury but he's highly functional and a really sweet guy. So anyway; his sister is a flight attendant on America West and we could get buddy passes for this vacation. Off we go, flying standby of course. The plane wasn't even 25% full, I asked the flight attendant if I couldn't be reassigned to a row where there were 3 of us crammed into the same row and she was very sharp with me and told me no. It was a miserable experience. I did manage an aisle seat so I could get up and walk but I arrived at both ends of the trip horribly swollen, even with support stockings. The flights were about 8 hours each way, there was a 3-4 hour layover between Phoenix and Seattle so I at least got to walk around a bit in the terminal and found a place where I could sit and really elevate my legs.

The Church of the Living Bed??? LOL

Happens to me too. Have a great party! Wish I was there to help you...

...and maybe we could tell the minister to keep the sermons to under 15 min!

Thank you, Dan for all the input and your willingness to share your struggles with the rest of us. You inspired me to start my own website and get a recumbent bike. Many times you have given helpful information to the rest of us and been an inspiration to those of us going through struggles. Best of luck to you!

We have a very small congregation, usually 25 or so, and we have space for over 100 so I'm not taking up space from anyone. At the moment we are starting to build our attendance back up. I wish we had a "cry room" where I could go but we just aren't that big. Another lady in the congregation has fibro and Lupus so there is discussion of getting a couch to put in one of the Sunday School rooms for times when one of needs to lie down. Once some of the teenagers came to sit by me and one of them told me it was okay to take off my shoes and put my feet on her lap! No, I didn't take her up on it but it is nice to see kids who are understanding.

At the end of my working career I was like briarrose, I would take "sleeping" lunches. I had an employer who was genuinely trying to keep me working as long as possible - we were all hoping I would get better with some rest or something. They bought me a rocking/reclining chair and fixed my computer keyboard so it was very movable and I could put it on my lap or anywhere I wanted to. I could go to the break room and lie down or take a nap whenever I needed. But the day came in the course of the progression that I could not remain upright (sitting in a recliner) for even 2 hours of the day. I cried on my way to the car. One of my co-workers had to call my husband to come get me because I had given up driving a few months before, then she walked me to the car because she was afraid I would fall down or pass out on the way. We have a laptop computer that I can use while I lie in bed or on the couch or I don't know what I would do. At church I sit in a back pew and turn sideways so I can put my feet up. In the car I recline the seat slightly, take off my shoes and put my feet on the dash. I have not sat at the kitchen table to eat a meal in months - I always eat on the couch where I can prop my feet up on the coffee table. Impact on my life?? I reckon so! But also an impact on my husband's life...

Stacey, you have really hit the nail on the head. Sitting during the wait time in a doctor's office is terrible! I know they are terribly busy but by the time I get into an exam room I have to lay down.

Jessica - thats SO exciting! I know the move is probably looking overwhelming, but just "keep your eyes on the prize". I'm glad you will be closer to ethan's grandparents and have more people to provide a support system. Good luck on your move!

I'm sure someone will correct me but here's my 2 cents re: cause of the shortness of breath. Our brains decide they are not getting enough oxygen - weather it is from a drop in BP or from sleep apnea - so the brainstem tells your body to breathe faster/deeper to get in more oxygen.

I don't have POTS, "just" (lol) NCS. I, too, get short of breath. Sometimes I just wake up during the night panting and trying to get a deep breath. The first specialist I ever went to was a pulmonologist. He did very in-depth testing, checked to make sure I was using my inhalers right - determined I did, indeed, know what I was doing. Then determined I did not have any kind of asthma. It was this doctor who found the OI and requested a TTT. It seems like there is no rhyme or reason for when the shortness of breath occurs. It looks like this is the same for most of us!

It is the same for me, at church they are used to the fact that I will take off my shoes, turn sideways in the pew and put my feet up. We went to Kansas (6-hour drive) this week for my husband to take his mother a new-to-her computer and I am now in MAJOR pain. We stopped to walk fairly often but even putting my feet on the dash as much as I could was not enough. Sitting is not much better than standing. I had to quit work when I reached the point where I could not sit upright for 2 hours a day.

Oh Nina! I have been out of town for a few days so I just now got back on. Best of luck to Steph and her baby girl, I will put her on our prayer list. I just had a great-niece born at 30 weeks - she is doing surprisingly well.

Okay - confession time - or maybe just an idea. The florist who made my bridal boquet for me was aware of my problem. She made it so I could slip an ice pack under it and keep my hands cool! My niece was my bridesmaid and made sure to hand back the boquet as soon as we had exchanged rings. Hey - it helped!

I know exactly where you are coming from. Last year I was to do a reading at a funeral. I was standing at the front of the church when "it" happened. One of the deacons saw me start to waver - while I was still reading - and swooped in with a chair. I was able to finish the poem - which was written by the deceased's granddaughter - without missing a beat. Bless Teri for being there and being so attuned to you!

Good luck Jessica! I went through that about a year ago and it sounds like a lot of us have had to make that decision; but tearose is right - it is freeing to just make the decision. It sounds like either place you move to would be an improvement to your circumstances so I am very glad for you.

I went to Vanderbilt last Sept to participate in a study. Everyone was very nice and the whole team was concerned about helping me. Best of luck, I hope you can get help there.

I have that; it is right at the top of my calves... and it really DOES hurt like the dickens! I have tried elevating my feet and rubbing on it, also a warm pack. But it still hurts!

Best of luck to you, Mindylee. I have not yet figured out hoe to explain this to my parents either; even though my dad has the same symptoms! Bless your parents for at least trying to help and your husband for being so understanding.

We moved from Montana back to Missouri so we would be closer to family and our church family. We both loved it in Montana but when I got sick it bacame obvious we needed to be closer to people who could help us more. Hubby went back to preaching at a church where he had preached when we had lived here before. I certainly had a lot of days when all I could do was lie in bed, not even being able to see the ceiling and praying, "Lord, if I have enough energy to make this move I will devote whatever energy I have to helping others." So far, we have been needed here and people are very understanding of my limitations.

I had a breast biopsy about 4 years ago. The doctor did it in his office so I figured it would be covered under my HMO (New West). It wasn't. Sure enough, in fine print - procedures in the doctor's office were not covered. I asked the insurance company. "So, if he had admitted me to the hospital, taken me to the operating room and kept me there overnight, it would have been covered?". The answer was yes. Go figure! I think you should definitely report this to the insurance company.

Cobra is simply a continuation of your present insurance. The only problem is that now you have to pay the entire premium instead of your employer picking up most of the cost as they did before. According to the ERISA laws you are entitled to 18 months of continuous coverage under your present plan and even after that ends - as long as you keep coverage of some kind with no breaks in coverage - you can't be penalized for a pre-existing condition. This is where the problem is for most of us - the NO BREAK IN COVERAGE part. You have 90 days after your last date of employment to make the COBRA payments and get them caught up. My LTD coverage kicked in and paid just in time for me to have the make-up payments to keep my coverage. But then when LTS decided to quit paying a few months later I lost my COBRA and had to move to s different state to get Medicaid. In some states, if you are eligible for Medicaid they will make your COBRA payments for you instead of giving you Medicaid, so you might want to check out applying for Medicaid. BTW, my Cobra payments were $544 a month, so they can be QUITE expensive!

I had a sleep study in 2000 and was dx with obstructive sleep apnea. I had surgery for it. A couple months later I went to work for an internist who told me that the surgery wouldn't last forever; that was the first I had heard of that and I kind of laughed about it. The entire ordeal did not help the quality of my sleep. Last June I had another sleep study and was, again, dx with obstructive sleep apnea. I'll pass on the surgery this time. I tried a c-pap machine both times, it gave me a migraine-like headache. No, it wasn't from the mask. The Dr said that approximately 3% of the population will have that problem because the c-pap raises the intracranial pressure and causes headaches of that type. On both studies I was getting less than 45 minutes of REM sleep each night. My EP blames the sleep apnea for ALL of my problems.

Yes, be sure to keep us up to date on this. I was SO lucky with my last employer - I was a nurse for an insurance company. They told ME what I could do as far as intermittent FMLA and so forth. Years ago I worked at a place, got terribly sick with pneumonia and was having to take a long time to recover so I went in and asked about FMLA; they told me they didn't have that. I told them it was a federal law. Nope, we don't have that. BTW, that was the Red Cross!!

I have been struggling with NCS for 2 years now. Both of my parents have pace makers and so do I. This weekend my son was with us and he said he was going to spend most of the summer with my Dad. I told him that was good since I know my Dad and Stepmom enjoy him so much. He said "Yeah, and I know I can be a big help to Charm (my Stepmom) since Pa Pa passes out all the time." HUH?? My Dad - as much as I love him - has been REALLY harassing me about why I don't work. And has even told me not to move closer to my family because "The state government can't afford any people like YOU." How DARE he! Maybe he has been in denial - but if the rest of the family has known about this WHY didn't anyone tell me? Yes, he is retired. But he will barely speak to me when I call and he has an attitude with me like I am just trying to mooch off the government since I am trying to get SSDI. GRRRR OK, I'll quit my rant now!