Dawg Tired

Sorry you are going through all of this - I've been there, done that. I was SO lucky that my family was far away and all I had was my very-supportive husband. I think I lived for months onoatmeal and tomato soup - very small amounts of each. I really had to look around for anything that would stay down and not cause pain. I had a tough time being stuck in bed for so long, too. My dad and mom (who don't live around here) keep wondering why I don't work. My ex-husband has told my son that I don't work because I'm "lazy". My husband can't work due to a head injury. At the time of the injury (plane crash) his family was determined he was going to be okay - and wouldn't let him apply for SSDI. He went back to work at various things in the ensuing 10 years then we got married. His condition was deteriorating so after our marriage I supported the family. When I got sick we applied for SSDI at the same time. In the past 2 years we have had MANY changes, and through the grace of God we have survived. We are still struggling for the SSID - for either of us. He is making $50 a week preaching at a small local church and many times these wonderful people have made our rent for us. I suppose I feel - as I'm sure you do - that I have really hit a low point and this is when I need to be really strong. But I feel like I am not strong enough to cope with this condition AND the things society (and family) expect of me. I tell myself that what doesn't kill me will make me stronger!

Welcome to our group, Ernie! Sorry about your brother. It must have taken a lot for you to finish your degree, Congratulations!

I had an EP listen to my heart for 20 seconds and tell me I was a "princess on a pea". Another on told me that all women "my age" have these problems. It (not us) Is totally insane!

I started out just helping a friend who had one of those "antique photo" places, there I learned to pose people and got a lot of good tips. You can take an artistic quality photo of almost anything. You just have to use your imagination and sometimes think: would an enlarged picture of that look good on someone's wall? You will learn. The new, digital programs available on the computers are great!

I quit driving after the second incident where I was suddenly aware I was driving. But didn't know where. I was on my way home from work both times and suddenly didn't know where I was or where I was going. I woke up one morning and didn't know who I was or where I was (or who was in bed with me!) fortunately it only lasted 30-45 min that time. Hubbie recognizes it in me very quickly and knows not to leave me alone in the house. Sometimes we will be in the middle of a conversation and I forget what we are talking about! It seems to be worse if I have overdone myself physically a day or two before. It scared the **** out of me at first!!!

I'm so sorry you are having a bad time. It can get so discouraging. Sometimes it feels like the whole world has pulled the rug out from under you, especially when you have a few "good" days. I will keep sending happy thoughts your way and I truly hope things will improve for you! ((((((BIG HUGS!!)))))))

Congratulations, Jessica! I am so proud of you! I'm with Dan. I, too, have been a pro photographer. I still do a little free lance work. I'm popular with the kids at our church because I am a viable - and much more affordable - alternative to the services the school offers for Senior pictures. This is a good way to start out and will give you some exposure. (and extra money!) Best of luck to you!

EM, I'm so glad you clarified the spray thing... Through the brain fog I first read that as a "small Mr." I wondered where you found a little man that would fit in your purse. I guess he could fan you. But I digress. Yes, I get the radiating heat thing. My hubby is a preacher and I have been forbidden to stand up at prayer time. Standing for an extended period is bad enough, but when the tachy hits and I have my head bowed and eyes closed I get really bad! They have had to move pews to extricate me from the floor. Sometimes I get tachy during the night and then the heat hits, it is worse than a hot flash! I sleep with a towel in the bed with me.

I think even platelets would be a bad idea. I have donated 10 gallons of blood and platelets, and they have even stricter parameters than whole blood. Yes, the RBC's are returned to you, and you do get some saline but it is still a shock to your system.

I used to be a nurse on a bloodmobile. While these nurses are the ones you want to have around when you are syncopal, it is best not to "tease the tiger". (Don't push your luck!) More than likely, if you are taking meds such as a beta-blocker or midodrine thry will want a statement from your doctor. It is very generous of you to want to do this but it is not a good idea. I donated once before I was Dx and wished - for many weeks afterward - that I had not. It was literally HOURS before I was stable. I was actually sent home with a nurse co-worker of mine and her nurse husband. If you are needing to "store" blood for an upcoming surgery, then the blood banks usually have different parameters and the donation is made under different conditions than a regular blood drive. IF - after all is said and done you decide you MUST donate, be sure to tell the phlebotomist that you need to lie down and have your feet elevated BEFORE they stick you with the needle. If this isn't enough to discourage you, keep in mind that they use those huge, 16 guage needles to collect blood...

I had a full pulmonary work-up and all was negative. But it was the pulmonologist that discovered I had orthostatic hypotension and recommended the TTT. But yes, sometimes I can be just sitting reading or watching TV and for no reason suddenly find myself gasping for air. I will get short of breath for no reason, but it is not all the time. My original dx was "allergy induced asthma". But now we know that was not right.

Melanie, just going to Mayo and having the tests is a big step. Even if you don't get a concrete diagnosis, you can usually at least learn what you DON'T have. Hang in there and try to keep your chin up!

Thank you, Jan, I am flattered! Now if I can find the energy to do something with this story...

Thanks for the responses, I wanted to share good news! Sometimes good news seem few and far between.

Jan (or anyone else) please feel free to contact me. dawgtired@pipinternet.net I have posted a couple excerpts on my website. http://gayla.greatnurse.net/ Thanks for all of your input and help!

Has ANYONE ever had Nubaine work for them?

I will put some excerpts on my website. when I do this successfully I will let y'all know first!

Anyone have any idea where to go from here? I have written about the frustrations of dealing with this from day one; trying to deal with non-believing doctors and familyt members - being labeled as neurotic - the frustration of ER visits... Y'all know the drill. But now what to do with it?

I have now been unable to work for 1 1/2 years. I was the only source of income for me, mt husband and my 12-year-old son. My husband had a head injury in 1990 and at that time his family was in such denial they would not "allow" him to go on SSDI. When I started getting sick I told him he needed to pursue it before we ended up with no income. Of course, he didn't. The week after I worked my last day we went in together to apply. His is going somewhat faster than mine but so far neither of us has been approved. We have been distressed due to our car being high mileage - 288,000 miles on our little Suzuki. Last Sunday one of the men at our church - who buys and sells cars - came up to me and handed me the keys and title to a 1986 Lincoln Town car. Talk about shocked! I was speechless! He said he was worried about our vehicle situation too; and this one would be big and comfortable for me. He was actually concerned that I had something nice - even though I don't drive anymore. What a nice guy who is also understanding of my situation. The car is in perfect shape, and a dream to ride in! Now if we can just afford gas...

I' ve tried Wellbutrin but after 4 months I didn't see any effects so - since I didn't have insurance at the time, or any income, I quit it. Denabob, I sat in the tub one day, knew I was forgetting something, got out, dried off, then realized... I had only shaved one armpit!

I had a cortisone injection 10 years ago. It was a workman's comp issue. I hurt my shoulder working at Levi-Strauss, they had sent me to an orthopedic surgeon and he did the injection without first doing an MRI. The injection caused such intense pain that I passed out. When I woke up the nurse was there and she acted like I was faking. When I got out to my car I realized, by looking at the clock, that I must have been out for at least 20 minutes. I was extremely shaky and lightheaded but I had a 50-mile drive home. I stopped at the homes of 4 family members on my way and everybody was gone so I had to do the entire drive by myself. The next morning I woke up still in exreme pain and I called into work. I was unable to lift my arm at all - I couldn't get dressed even. BAD headache - very lightheaded - felt like I couldn't breathe. The nurse from work called me and told me I HAD to come in - that I would be better if I would "just move that arm". I didn't go in - I told her I couldn't even get dressed. Yes, I still have a tremendous amount of shoulder pain, but have been told that at this time surgery might make things worse. As for the steroid reaction, there was NO mention of it in the medical records I got from the Dr office.

Yes, URRGGG - I can distinctly hear my family - even my 12-year-old son - saying "If you would just exercize"!! Luckily my husband DOES understand. I am blessed there, he knows that when I say it is time to go home that it is time to go to the car, recline the passenger seat, put my feet on the dash and GO HOME.

I was a nurse. My extreme fatigue started and I was told I had a virus and I would be better in ten days. It has now been 2 years.

I have to say the brain fog is by far the most devastating symptom I have. I have had to quit driving so I have lost most of my independence, people (who have known me as a nurse for many years) ask questions about an illness or med they are taking and a lot of times all I have to offer is a blank look. I try not to have too many pity parties about the "old me" because I know it won't accomplish anything but it is difficult for people to understand what is going on with me.

I was dx with endometriosis at 17. A doctor told me that if I was going to have a child I better do it before I turned 20. I resigned myself to being childless. I spent YEARS being disabled and huddling in bed with a heat pad 4-7 days a month. During high school I started drinking because the pain was so intense I couldn't handle it. Before I was diagnosed I thought this was normal. For years I doctor-hopped trying to get a hysterectomy. Being childless no doctor would even talk to me. when I was 28 I got back together with my childhood sweetheart and we decided to try to have a baby. After 3 miscarriages I got a pregnancy to 36 weeks and had Victor - he's now 12. Three years later I had endometrial biopsies that showed endometrial cancer; I got the hysterectomy and my life improved. BTW - my mom took DES when she was pregnant with me and my sisters, all of us developed endometriel cancer.