Ernie

Hi Emily, Well, you are almost there. Just think that tomorrow at this time you will be on you'll be recovering. Ernie

I would go to the doctor because there is always hope that he will find a solution. Ernie

Good luck with the surgery, I know everything will go fine. Keep us posted. Ernie

Hi, I would try a sleep specialist or a pain specialist. Ernie

Hi Mindy, Welcome home, I am glad you had a nice visit with Dr Stillman. I don't know much about blood cloth but are they able to remove it or give medication for it to go? I know I had bradycardia and the lowered my BB so that helped a bit. Usually I am more tachycardic but I have episode of bradycardia. I guess if it gets to low they might suggest a pace maker. Ernie

Thanks Tearose for sharing your new knowledge. I am very interested by the content of your post because I have similar symptoms as you do so you are also helping me. When I did my sleep study I asked to have constant BP monitoring and they did not want to take any BP reading saying that it would wake me up. I also asked them to take my catecholamines while I am asleep and the sleep specialist said that it was a good idea but it was not in the protocol. So I am just about like you. I don't know if I wake up because of the adrenaline rush or something else. Ernie

Hi, I have an appointment with a new neurologist this Thursday. I am very nervous because I would like him to investigate why I have muscle weakness and muscle paralysis. So far, I have seen about 6 neurologists who just took down my medical history and did not do any tests because my symptoms don't match known disorders. 2 of them (well known) even told me that since I am unique I am not worth investigating! I am afraid I will loose my temper if he is condescending or just plain ignores my problem. What can I do to keep calm and "proffessional" looking? How can I go about to convince him to test me? To top it all when the neurologist does the basic neurological test in the room, ie walking on the straight line on my toes, it triggers my syncope. How do I deal with that? Thanks Ernie

Hi, I have to be careful with cold also because it triggers syncope. I heat up my car before getting in and I don't walk outside in the cold alone. Too many bad experiences. Ernie

Hi Nina, I feel exactly the way you do. I used to have housecleaners (I hope that's the way you say it!) and I always hired people with good references. For example, they worked for my friends or my clients or were friends with acquaintances. I never had anyone stealing. I had some breaking things and one putting the dust under the carpet but otherwise it was fine. You could also specify that they need to work when you are home, ie Saturday. Ernie

Hi Persephone, Have you discussed the Prozac issue with your doctor? We have to be careful when stopping or decreasing mood affecting medication. When we don't have a diagnosis, we think that by finding what we have will solve all our problems because we have been told that doctors can solve almost everything (the magical pill). It's like you find the prince charming and you get married and live happy forever." After marriage, you realise that your husband is not the prince charming and you have to make some adjustments and then your life gets another "normal" and routine sets in. It's similar in chronic illness. You get your diagnosis, your learn about your disorder and you find your limits and function within them. This is a long process that can take a few years and you may even have to readjust as your health changes. Give yourself time, you will make it through. Hugs Ernie

Hi Nina, I am sorry you are having pain because you went above your limits. Could you hire someone to help you out with the housecleaning? This way you could have a clean house and enjoy your company. Hope you have a nice sleep tonight Ernie

Hi, I would not feel confortable with the idea of people calling me for support (I know it's been mentioned volunteers only). I have been a therapist for more than 10 years and I did not want my clients to call me other than to take or change the appointment. I needed some time to recuperate and since I was a workaholic I did not have much time available. When I started my career I was very open and generous with my time but the more I gave the more my clients wanted and I had to put my limits because I was getting burned out. So now that I have very limited energy, I have to be careful at how I manage it. When I answer on Dinet, I do so when I feel "well" enough to write and when I feel like I have something positive to say. I can assure you I don't have many productive hours during the day. Another thing that worries me is that when we are in a Potswhole we do get really depressed or sad. I know how personally involved I get when someone lose hope to live and I don't want to take on this responsibility. I think that when we have reached that point we have to consult with a professional who is strong and healthy enough to help us through. Many of us are severily sick and disabled and that would be too much a responsibility to handle. Also, it takes some kind of training to give support, especially when we are in Potswhole and need help. Even if we are willing to help others there are times that training is essential. That's my opinion. Ernie

Hi, I have been told in my massage class that if you push the skin with your finger and you have indentation it is water retention. Ernie

Hi Ginger, I am glad that your daughter is recuperating well. I hope that it's not too painful. I will pray for your sister-in-law. Keep us posted on her progress. Ernie

Welcome back, I am excited for you that you have found good doctors to validate you. What a change of pace. Keep us posted with the results. Ernie

Hi Tearose, You impressed me. I could never remember poems. Do you know many by heart? I would like to have a poetic mind, ie being able to read a write poetry but that is just not my talent. Hugs Ernie

Hi, I just got to look at the video I did last week! Wow, I am surely glad to have it because this time I could really see my nephew being born. I was so excited last week that I was wondering if my camera was set properly. It was! I'll make a copy for my niece as a souvenir. I would have liked to have a movie when I was born. I am curious to know how my mother did! Ernie

Hi Jill, The danger for us in my family is vasodilation and epinephrine. The doctors did not give anything that would cause my niece problems. Ernie

Hi Kathleen, I am really glad that you pulled through your surgery. I admire you for the way you managed your medical file and doing all the research for the docs ahead of time. That was very helpful for them. I am sorry that the nurse had a bad attitude with you. Some people are just plain ignorant. I wonder why they are in the medical field if they can't even understand what it is to be sick. Hope you are recovering well. Ernie

Hi Kristen, I am sorry for your syncope last night. I know exactly how you feel. Sometimes it's just so hard to know what to do and it seems that whatever we do we are bound to faint. I would go to the ER to get an IV. This is the fastest way to recuperate from a syncope (for me at least). I would also find someone to help me with the children even sleeping at home during the time that your husband is gone on business trip. Hope you are feeling better. Ernie

Hi Ginger, Well you have managed with flying colors. I hope that things are settling down today. Ernie

Thanks Briarose, I am seeing a new neurologist this week. I want him to investigate the muscle weakness. I am following your advice to prepare. Ernie

Hi, This happened to me a few times and I get so frustrated that it takes me days to rewrite the text. I understand how you feel. I don't have the answer to your question but just wanted to say that I think about you. Ernie

Thanks Julia, I did not realise that EDS affected so many systems. This is quite an extensive document. Ernie

Hi Mary, Tha'ts wonderful news. I hope your daughter does not have to suffer much longer. Ernie