Bernie, What a tale you had to share! Please know that we're here for you and you and your family will be in our prayers. Please keep us updated!! janh My Dear TM Friends and Family, It has been a very long time since I have posted to the group; these past months or almost two years now have been awful to say the least. Rick, I am not sure what happened to your son, but I gather he has passed on, so I send you and your family my sincere condolences for your loss. But as was said by others, we may be 'strangers' in many ways, but we are also a very large family and we feel each others pains and sorrows. To Jude, my dear friend... I have caught a few excerpts of what has been happening with you. And I hope you know you are in my prayers, as well as Rick and all others. You have the spirit of a warrior to keep on going as you have been. As for me, some of you know I had a very difficult time in my recovery from my last surgery in March of '08. To keep the facts short, what happened was this: when the doctor went in to replace the pump, he found the doctor who put in the previous pump had used a sort of 'mesh' bag to suture it in place. Well my body apparently did not like this bag (it was the first time it was used in me) and it attacked the bag and my body and ended up making a ball of intertwined scar tissue the size of a grapefruit in my left lower abdomen. He said it was a real mess, and the normal 2 hour surgery took almost 9 hours to clean up most of the mess. I still have some scar tissue and parts of the old catheter left in me, but he said if he had tried to take it all, he would have had to nearly gut me. And it took over 4 months just to get sort of back to my normal routine, I am still not back to what would be normal function for me. I now also have new neurological problems, they are not sure why, but it all started after this last surgery. It is possible that some of the scar tissue followed the catheter into the spinal column, there is no way to check for it with an MRI as I have the metal infusion pump in me; the MRI would rip it out of me. I have new areas of pain in my lower back, I am having spasticity and nerve misfiring in my arms and neck now; they don't think it is TM, more likely MS as sometimes happens with TM patients. So that is just a short burst about me. As many of you know, my oldest daughter has been living with me now to help take care of me, but since then she had a massive thyroid storm January '07, had it surgically removed May of '07 and was diagnosed with Hypothyroidism and Graves Disease. So now she has Hypoparathyroidism and Hypocalcimia. She also started having Grand Mal seizures, they do not know what triggered it, but they put her on Dilantin and they are under control right now. Since then she has gotten progressively worse with wicked non stop migraines and other neurological symptoms; they are searching for the cause, but because we are on government health programs, it takes forever to get appointments. The latest idea is that she might have something called PTC or pseudo-tumor cerebri. It is not a tumor, but the brain acts like there is a tumor and the spinal fluid levels increase causing great pressure around the brain, thus the headaches and other symptoms. There is no cure, just a stop gap surgery where they place a shunt at the point where the brain and spinal cord meet. When the fluid reaches a certain pressure, the shunt opens and releases excess fluid into the body where it is disposed of through other body functions. She has applied for SS assistance and was turned down (of course), we are trying to live on just my income, and she hates feeling useless. She wants to get back to work and school so bad, but she barely has enough energy to get through a day just around the house. My youngest daughter has been treated for Endometriosis for about 8 years now, has had numerous surgeries to remove scarring and lesions, but the pain got no better. So they removed her right ovary last year in hopes that would solve it, but as you can guess, it did nothing, and she still suffers from severe pain and cramping, and all the other things associated with that disease. Thank God my ex wife - (kids mom) has had no serious repercussions since her bout with breast cancer and a radical mastectomy, lung cancer and the removal of most of her right lung. She just has to take it easy as she gets short of breath really easy, but otherwise she seems to be doing relatively well. So we have one thing to feel good about, and thank God she is blessed with no more cancer right now. Every one of us in my family, including my brother and his kids and my sister have autoimmune disorders. I say there is a genetic link to these diseases, but doctors say no. So either we are the unluckiest family in the world, or there is a link, they just haven't searched hard enough for it. So all in all, I do not get on the computer very often anymore. But that does not mean I am not thinking of you, I check emails every few days; but generally have no energy or am in intense pain to try to write everyone back. I truly miss you and wish you all my best... Rick, Mary E., Jude, Gilly, Phranque, Bob, Cody, Dex, Cossy, Bob, Sarge, Todd, and I know I am forgetting a lot more of you.. and to all the TM family; my heartfelt thanks and prayers for all of you. I miss talking to y'all through our letters, and hopefully I will be able to get to the computer more often in the future. I do have to go now as I am really spasming and my pain is through the roof. Blessings and Peace to and for all of you... Namaste, Bernie
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