Dawg Tired

I was told that it would "correct" the arrythmia I was having. But it seems that they CAN'T correct an arrythmia, in other words, the doctor that put this thing in must have needed a down payment on a new Mercedes or something... Since it cost $28,000 just for the pacemaker. His bill was $8,000.

I have heard this since I got the pacemaker. But all the companies that make these pacemakers talk about how great they are for syncope... I'm ready for it to come out!

From what my EP told me my heart is "fighting" with this darn pacemaker. Has anyone else had this problem?

I know the feeling; as nurses I guess we are so accustomed to being able to "make it all better". But with this stuff, it is especially frustrating because on top of not being able to make it better - no one understands it! I tried to be a camp nurse a couple weeks ago. I bandaged a dozen skinned knees and other than that I stayed flat on the couch. So much for any kind of a return to normal!

Danelle, I know how you feel. My husband was in a plane crash 14 years ago and sustained a head injury. At the time it happened his family was told to apply for SSDi for him. They refused because they had decided that they didn't want what they saw as "welfare". He was able to work part-time at minumum wage jobs starting a couple years after the crash. When I married him 8 years later I suggested that he quit work because he was in constant pain and was having constant fatigue. He stayed home and I suggested to him several times that he go ahead and pursue his SSDI but he refused. When I started getting sick in the spring of 2002 I told him that he really needed to pursue his SSDI because there might come a time when we would lose my income since we couldn't figure out what my problem was and I was slowly sinking. He still refused. Finally on September 11, 2002 I made it to work and he had to come get me less than 2 hours later. That was the last day I worked. On September 16, 2002 we went in at the same time to apply for SSDI. We are still working our way through the system. Luckily we did not have any vehicle payments. The only thing we owed was a house payment and we quickly sold that when we moved back to be closer to family and friends. We are still struggling finalcially; Hubby gets $50 a week preaching at a small church, we get food stamps and Medicaid, every month we have to bum rent money from somebody. But the moral of the story is: SSDI will NOT look at your case differently 6 months from now if you drop your case and you will have lost 6 months of what could have been your waiting period. We divested ourselves of everything we had to survive the last 2 years. My husband finally got a hearing in March and we are still waiting for an answer from the judge. My hearing is scheduled for Aug 30. I waited until I just couldn't function anymore before I quit work and that put me bedridden for several months. PLEASE - for your family, in the long run - keep up the fight! Just think of where you will be if you wait too long and have to start the whole process over.

No, Paige, you aren't alone. I had to quit working in September of 2002 and I had to quit driving 3 months before that. For the first 3 1/2 months I was home all I could do was lie in bed. On "good" days I could roll over on my back and look toward the ceiling. I say look toward the ceiling because, even wearing my glasses I couldn't "see" the ceiling. My husband had to help me get to the bathroom and back and one of my friends had to come to the house a couple times a week to help me bathe. And all this time some of my doctors were telling me that it was all in my head. Eventually things improved somewhat. I thought it was a great day when I made it all the way to the living room and sat up in a chair (with my feet on an ottoman) for an hour. It wore me out so bad I slept for 20 hours. I have days when I get "down". I was not planning to "retire" at 43. All of the money I paid into retirement accounts has long since gone to doctor bills, COBRA insurance and just generally trying to survive. We are living on food stamps, Medicaid and $50 a week my husband makes. We have both been waiting for almost 2 years slowly making our way through the Social Security system. I have lost many of my fine motor skills so the sewing, embroidery and crocheting I was planning to do in my retirement years probably won't happen. But my hubby and I have decided to enjoy these years together. We go for rides - when we get the gas money, we enjoy friends coming to visit, I have a bird bath outside the kitchen window. My one "must do" task a day is to attend my bird bath. I know it isn't much but at this point in my life I realize I have to have small goals. Sometimes we have to give ourselves permission to achieve less.

I find noise highly irritating; it seems to wear me out and make me tired more quickly than having quiet.

Our church was sponsoring a week-long camp for kids age 10 to 14; I did not volunteer to be the camp nurse because I knew it would be beyond my capabilities. 3 days before the camp was to start the director told my husband she could not find a nurse for camp. Hubby told her I might help if I had a place to lie down all the time. She told us that the cabin for the nurse was air conditioned, had a microwave, refrigerator, and a private bathroom. I told her I would come down BUT - I could NOT run around and keep up with the kids. She said that would be fine, I would be needed to only distribute meds to a few kids who needed them and take care of first-aid situations. Ok, I decided to try. I packed up and went to the camp. My "cabin" was kind of a three-bedroom house I would be sharing with 4 other women. Ok, I can handle that. I asked about the air conditioning; no such thing. I should have gone back home then but I decided I was doing a good deed so I would try to tough it out. The heat index every day was over 100 degrees, I never got to bed before 1am and then had to get up at 6 am every day for morning meds. I was miserable!!! To top it off several of the counselors were snotty about me "doing nothing but sitting in the cabin all day". The lady for whom I had volunteered never told them I had health problems! URRRGGGHHHH!!! Some people! OK, I'll shut up now - thanks for letting me vent!

Several years ago I had a problem and I found a book called "The Yeast Connection". It got rid of the problem and I still follow a great many recommendations in the book. I no longer have it but I have seen it available in health food stores and bookstores.

Ling is right - you DON'T deserve to be in pain! My pain level was so high for so many years that after I had my hysterectomy the post-op pain was actually a relief. I did not need any pain medication for it. When I look back on the years I was misreable from the severe pain - and all the doctors that told me it was "normal" - I could just scream! It is kind of like the problems we are having now and the idiot doctors we have to put up with. My conclusion - that I am sure will be seconded - is that doctors prefer to blame the patient for things they don't understand.

I spent a week there, they were wonderful! Please feel free to e-mail me. dawgtired@pipinternet.net

I got the CF diagnosis when I went to Vanderbilt about the NCS. Dr Raj told me I was much too fatigued to lay all of the blame on the NCS. He also told me there was a doctor in Buffalo, NY studying the link between CFS and NCS but I wasn't interested. We have been over a year without any income and our church was kind enough to pay expenses for us to go to Vandy so I didn't want to keep pursuing something that probably wouldn't help anyway.

Does anyone else get a post-coital headache afterward? I get terrible (like lightning flashing) headaches unless I (sorry so graphic) get on top.

Our 4-legged darlings always love us no matter what the rest of the world thinks about us. Hmmm, maybe if we take the dogs to the doctor with us they can make the doctors understand us??

Sorry you had to make another cake... but it is hilarious! Sounds like our dog, my sister was trying to make a grilled cheese sandwich so she had the bread out and put a slice of cheese on it then turned around to put the cheese back in the fridge. When she turned back to the bread the cheese she had just got out was gone! She got another piece out and put the cheese back again. The cheese once again disappeared... The third time she kept an eye on the cheese and watched the dog quietly reach up onto the table and inhale the cheese; then sit back down where he was before. Ours was a mixed breed but looked like a lab. Happy birthday to your daughter!!

You must have done it right since I managed to vote. I have had pain from fibro for about 20 years.

Sometimes we just have to stick with what works... I lived on tomato soup for a couple of months when this first started. Now I have days when I can only tolerate crackers - sometimes with pimento cheese on them. Milk is a big no no but yogurt is okay - I assume I developed a lactose intolerance. I think all of us have gastric problems of one sort or another.

Carol, I'm SO sorry to hear you are going through all of this. When I started having problems we were living in Billings, Montana. There wasn't any doctors arount there who could help me but I did have a reasonably good TTT done at one of the hospitals. It was done with an EP in the room the whole time and they used nitro to challenge. After the test when I had been lying down talking to the tech for about 10 minutes my BP suddenly fell to 50/0 . He panicked because he had just dc'd the IV. It came back up but I thought it odd and to this day have no explaination for it. We looked in Colorado for a specialist in dysautonimias but could not find one. I have been to Vandy and was impressed with the staff; they really try to help and for once I felt like someone was taking me seriously. We have now moved back (home) to Missouri and I have 2 GREAT doctors. I wish I could clone them for the rest of you! I intend to get a copy of the book - it sounds interesting!

I was up in the music camp above Estes Park in 2001 for a week. No problems there. It is on the edge of the Rocky Mountain National Park and we took several car trips into the park. I was Ok, I just couldn't walk around a whole lot at the higher elevations. it seemed like if I was below the timberline I did better - or as good as I ever do!

I get vertigo during the night. It isn't unusual for me to wake up clutching the edge of the matress because I have the feeling I will fall off of it. I also can't watch things on TV that have a lot of motion in them; like "Cops" or "24" where they tend to be moving a lot with the camera. These disorient me terribly!

I have had this problem for years, not all the time but it seems to be getting more frequent. My doctor who has known me for 10 years is used to it. When I went to Vanderbilt they had to bring 3 different machines and even then they couldn't get it all the time.

I had endometriosis. It took 22 years and 3 miscarriages but I finally had a healthy baby boy who is now 12. I had a hysterectomy shortly thereafter.

This stuff IS life-changing. I heartily applaud those among us who are still able to work and keep themselves together.

Ernie, I have done the same thing. I found it to be very therapeutic. I also cried a lot as I was remembering the life I had before. There are excerpts on my website; I cant; decide at what point to end the story but I intend to start submitting it to publishers soon. Best of luck on this endeavor! What a talented bunch we have here!

I have also had the episodes when I woke up and didn't know where I was, aho I was, who was in bed with me, (turned out to be my husband! ) and, most importantly - I didn't know where the bathroom was! I quit driving after getting lost on my way home from work twice. We welcome you, all of us know it is nice to know we are not alone in trying to deal with this stuff from day to day.