Dawg Tired

I had 1 still birth (22 weeks) then 2 miscarriages - 16 weeks then 12 weeks. Then I had my miracle child. He was a 36 week baby but quite healthy. I knew I had some sort of heart related problem but no one ever figured it out. I also had endrometriosos and my mom had taken DES while she was pregnant with me and my sisters. We all developed endometrial cancer and had hysterectomies.

1) Gayla

2) Cider House Rules - I read it YEARS before it became a movie!

3) From Noon Until 3 - early Charles Bronson and Jill Ireland

4) Corned Beef Hash - cooked crispy. My cat Hector - watching birds - watching our chickens; oh wait... I guess they're birds too??

5) I am a left-handed dyslexic redhead from Arkansas - no wonder I have problems!!

Thanks Persephone!

Ok, I laughed at the time... But I read on another (not POTS-related) site that crawling backwards helped your memory. At least there isn't far to fall when you faint!

YAAY Emily!!!! I'll bet you feel better already. I'm so happy to hear that things went well!

My problem is more with NCS than POTS but I still have the same problem. My hubby and I have learned to live with it but I had to quit work when I reached the point where I couldn't sit up for 2 hours a day. But I was an insurance nurse and I would find myself doing things like calling the same place 2 or 3 times.

I frequently misplace things and forget how to do things like how to turn on the washing machine. I quit driving because I figured in this shape I had NO BUSINESS on the road. When I had a psych exam for disability I found I had lost a LOT of my math skills.

My BP didn't spike but OH I was SO TIRED!! I think I only woke up to eat the last week or so. My son was 4 weeks early but was fine. Yes, I think the extreme tiredness is POTS related, but you need all the rest you can get.

I too had to quit college 6 weeks before finishing my degree - but I wasn't lucky enough to have it offered to me anyway. Please take this opportunity - if you don't you are closing the door to much of your future. I think that in our situation we have to look for a purpose; I was confined to bed for several months and the saying, "When God closes a window he opens a door" was all I had to hang onto so I decided that I had to find a place in my new life. I had been making good money as a nurse; I felt that I made a difference in this world - now I had to find a different way. At first I found it hard to believe that the whole world as I knew it didn't just fall to pieces.

These days I am an avid birdwatcher - from out our back window - and I am a full-time preacher's wife. These and my 12-year-old son give me a full life.

Perhaps when you find a time in your life that you are physically able you will find your niche in the world. It may not be as glamourous as you dreamed, or as exciting; but sometimes we have to take baby steps.

Oh Ginger!! Tell her not to feel too bad... I once stuck my finger in the deep fryer to see if the grease was hot... It was!

Some of the things we do while not thinking!

Hope things turn around for your sister-in-law; I hope things for you are going to settle down now.

Gayla

Keep trying! Keep harassing! Over 40% of gallbladder inflammation/stones/sludge present with all negative tests! If it isn't taken care of it can rupture - there's a set of problems you don't need!! EEK!! Somehow you need to get to a surgeon. Even if it isn't your gallbladder it might be an adhesion or something else that than can be "fixed".

John, I have had a pacemaker for almost two years - haven't worked for two and a half years. My doctor told my LTD insurance I was able to work. It took 2 years of fighting to get my SSDI approved. It was approved in October of this year, still haven't seen $ yet. I still have EXTREME fatigue, tachy, dizziness, pre-sync. I can't tell that the pacemaker did anything but make another payment on the doctor's BMW.

Many of us went for years being told it was "all in our head". I was told by at least 3 doctors that "this happens to ALL women your age". I was 43 at the time and knew a lot of women who were older than me that hadn't had problems. Best of luck with your specialist! This forum is a wonderful, supportive place - it has helped me through many dark and lonely times.

I was totally bedridden for about 4 months. At the onset I had a rather quick progression of symptoms; started in April, 2002. I was walking 2 miles every morning - a full time job with unlimited overtime, full time college student. Then I started having fatigue > shortness of breath > dizziness > syncopal episodes. One day I couldn't sit up for even 2 hours to go to work. I was stuck in bed for 4 months. Had days when I couldn't watch/listen to TV because the sound/pictures/movement just wore me out. I was total care. Luckily I have the WORLD'S GREATEST HUSBAND! I have gradually improved. Not made a recovery by any stretch of the imagination, but I can walk as far as the living room, watch TV most of the time, and attend church most of the time. The social outlet has been important. Don't know if I answered your question or not but you still need to feel there is hope even if you go through long periods when things are bad. I was trying to make funeral arrangements while I was in a bad phase - I let the worry really consume me for a while! Now I look back and laugh. Oh well - we become quite resilient.

Greetings from a fellow column hugger! I have also avoided people from my "past life". And unfortunately, a lot of people from this life still don't understand either. I have found that if I am really confronted by the issue I tend to hide behind the "mysterious disease" story, since I'm pretty much homebound these days I don't run into people very often.

Julie, I am in southwest Missouri, about 50 miles north of Springfield. If you want to e-mail me directly my address is: dawgtired@pipinternet.net

If you look on a map I live in Louisburg, go north on Hwy 65 and you will see it north of Buffalo.

Yes, I am very blessed to have such a support group. I think some of the visitors we had were shocked to find it was the preacher's wife that needed a hand up. What a warm fuzzy feeling it is to have people around me that understand - i'm talking about this group too!

I have one of the earlier versions of the Roomba. Hubby decided I needed it since neither of us are up to cleaning house. It works GREAT on smooth floors like hardwood or linoleum and on short napped carpet. It is bagless - uses a filter. When the dustbin is full it stops and plays a song to let you know to come empty it. It also goes under all furniture that is more than 4 inches off of the floor. When they moved my couch it was sparkling clean underneath! You will still need a "big" vaccum cleaner but the Roomba keeps the floor "barefoot clean". In short - I LOVE THIS MACHINE!!

My husband preaches at a very small church - about 30 people on a "good" Sunday. The youth group had a Christmas play they had been wanting to do for the last 3 years but there wasn't enough of them to fill all the characters and they never started planning early enough to do it.

This year we decided to do it; one way or another!

We (the moms and I) decided that some of our characters could "double up" - play more than one role. And it wouldn't hurt some of the adults to help out either. So here we went. The play had "commercial breaks". Hubby was selling a product called "Camel Kleen"; it supposedly made your camel smell nice. One of the dads did a "commercial" about the census, (the setting was Bethlehem the night of Jesus' birth), and the last commercial was for "Net Menders", we would repair your fishing net in about an hour and have you back on the water. Me and one of the moms did that one.

Well... best laid plans of mice and men.... The big night arrived. But one of the people playing 2 roles was sick - and her mom stayed home to take care of her - so that put us down 3 characters.

And so - the Magi became me, one of our elders (a physics professor at a local college!) and another man. In the first scene we appeared in we were to come onstage dancing to reggae (sp??) music. The physicist led us out, dancing and carrying the boombox, me and the other man right behind him. I survived the dance, went offstage and luckily one of the ladies was waiting for me with a cup of water. Then I had to go right back onstage and do the "Net Menders" commercial. Then the Magi had to immediately go back onstage and kneel beside the manger until the last scene when we were supposed to stand and lead the audience in "Joy to the World". All was fine until the standing part. The guys (on each side of me) stood up, immediately saw that I didn't make it, and they both reached down and pulled me up. It was a show stopper! Everyone (especially me) started laughing so hard that when we started the song I could hear the piano player (she was right behind me) laughing while she was playing! I got the giggles and couldn't stop.

Of course, our little congregation had more than doubled in size since it was the Christmas play, everyone came to see it. We all had a great time. I am still trying to recover from the ordeal but it was fun!

I was asked for more info at every step of the way and finally got it, after 2 years, at the hearing level. My husband went all the way to the hearing level with them asking for more info all the way too; then the judge sent him to 2 more doctors - and he had CAT scans showing both frontal lobes of his brain had atrophied!!!

I agree with briarrose . I'm a DDD cup (sorry if that's more info than you wanted!) but everytime I go for a mammo the tech pulls and tugs then squishes - they always say that the plates have to be so tight to get a good picture . I have felt lightheaded while going through all of that. And usually swollen for 3 or 4 days after... Like I need THAT!!

Thank you, Beverly. I will certainly keep you and your family in my prayers. I am extremely fortunate to have such a caring church family. (OOOHHH do I love all of them!)

Beverly, sorry I didn't get back to you sooner, I was gone overnight. Yes, I was extremely fragile while I was confined to bed. I think the only thing that helped was time. I tried Florinef but it made my BP skyrocket.

I was working full-time+ at an insurance company as a utilization review nurse when I started getting sick and I would walk 2 miles every morning. I started out with shortness of breath and fatigue, couldn't figure out what was going on and my primary care doctor wouldn't give me a referral to a specialist - of any kind! My boss called him and asked him why, if he couldn't figure it out, wouldn't he send me to Mayo or Vandy. He told her that "she'll get better sometime". My boss then came and told me that as far as they were concerned I didn't need a referral. One of my co-workers, whose husband was a doctor recommended a very dear doctor who was a board-certified pulmonologist, internist and infectious disease doctor. My friend told me that "if he can't figure it out he can at least point you in the right direction". He did mainly pulmonary tests then sent me for a stress test. They were all negative and when I went back he did a "poor man's tilt-table" and found I had orthostatic hypotension. He sent me for a TTT, which was positive, and then to an EP. I had a really crappy (hope I don't offend anyone!) EP who tried the florineff, I gained 16 pounds in 4 days - Dr told me to stay on it "for a month or so" and see how it was then. YEAH RIGHT! When I was in nursing school I had learned that this amount of fluid retention would quickly put me into CHF. My BP was running 220/120 in addition to the fluid retention so I took myself off of it. Then the EP decided I needed a pacemaker. I had never seen the EP, they kept sending me to a RNP in the office. I requested many times to see the EP but kept being refused. I ended up getting the pacemaker. It did not help, I still have pain - 2 years later - on the operating site.

We had terrible financial struggles, I had been our only source of income since my husband had been in a plane crash 14 years ago and has chronic severe headaches.

At this point, after 2 years I finally got my SSDI approved so now we have an income. it took so long that my back pay will pay off our house. YAY!!

My days - I manage to get to church most - but not all Sundays. I don't drive. I can't stand long enough to wash dishes or cook. I have a barstool I sit on to work on washing dishes a few at a time. I rarely cook, we mostly eat microwave dinners. Some days now I can walk to our chicken pen and watch them - I find them soothing. I have lost quite a few of my fine motor skills, I can't embroider or crochet anymore and sewing everything takes about 4 times as long as it used to. I still faint and have a lot of pre-sync spells. Our church men got together and finished a room at the back of our house where I have a TV and a huge picture window where I can watch birds. That is where I spend the most time. On days when I can't read I listen to books on tape. Please excuse the long post, I hope I answered your questions. Don't hesitate to contact me if you want to or need to.

You are to be greatly admired for your devotion and willingness to help Nicole.

Beverly, I feel for you and Nicole. I have spent months at a time in bed with serious brain fog, unable to read or watch TV even. The day I managed to walk as far as the living room - about 15 feet - I thought I had really done something big! Nicole is SO blessed to have you for a mom. And it sounds like your hubby is a sweetie also! I hope y'all had a happy Thanksgiving and that Nicole didn't get too worn out. It seems that my best times are also during the middle-of-the-night hours. Wishing you both the best!

My mother had 4 miscarrages and 3 live births. She took DES (a hormone that doctors used to believe prevented miscarrages) while she was pregnant with all 3 of us. We have all had endometrial cancer. All of us have had only one child. I had 3 miscarriages and given up before getting pregnant again and, after 24/7 nausea and vomiting, bleeding all the way through, and then my water breaking so my son was 4 weeks early; I had a healthy baby boy. He is now 12. I had my tubes tied while I was in the hospital with him.

My sisters have developed the same cardiac symptoms I have. Don't know if it is related to mom's pregnancy problems or not. Both parents have pacemakers...

Vandy diagnosed my CFS. My PCP diagnosed my Fibro. NCS diagnosis came from my first EP, she did a TTT to show me that I had nothing wrong with me and it was all in my head. She actually told me that I was a princess on a pea. I am gone from that group now and I am happy with my doctors... But what a pain to find them.

As a nurse, I was taught that CFS and Fibro didn't really exist. But I did a lot of reading on my own and knew it did - even if, in the early 90's the cause wasn't known. I have many times heard my co-workers make comments and roll their eyes about patients who had these disorders. Unfortunately, these opinions are further disseminated by doctors who don't want to bother with illnesses they don't understand and can't make a quick diagnosis/cure for. The things they don't understand they won't bother with - it cuts down their "God complex". I worked for an insurance company that DID recognize all of these disorders; but they were very insistant that all of us nurses keep up on the latest studies on all of these disorders. So, as usual, some good and some bad...