<*>YOU HAVE FOUND THE PHYLLIS GRIFFITHS BACKWARDS BLOG FOR PAGE JANUARY 2006<*> LIFE DECENDS INTO HELL ~~~reverse order..newest on top, oldest on bottom~~~ ---- From wo286@victoria.tc.ca Thu Jan 26 01:58:26 2006 Subject: update on me.. seen surgeon- this & that Hello dear friend, I had Melody with me when I saw the surgeon on Wednesday morning. I was very nervous and didn't know what to expect. Melody had told her endochronologist on Monday about how I was being jerked around by my GP and she got so upset as to tell Melody that she was going to break with protocol and contact my GP and demand that he give me an immediate referral to her. Melody contacted my GP's office Tuesdsay morning to "Pass along the message" which had already gotten there. The nurse was already in the process of typing up a letter to fax off along with my file as a simple email referral was not being considered as good enough! Back to the surgeon, one Dr. Porter. He felt that I was being sent his way far too soon since neither had my GP, Dr. Wolovitz, done the proper lab work to make sure that the tumors needed to be removed at this time nor had he referred me to an endocronologist. He felt that the ENT who found the thyroid tumor was doing the responsible thing to try and get a biopsy of it, but that there was a massive communication breakdown between the doctors involved with everyone assuming that the other fellow was ordering the tests and calling in the endocronologist as soon as the second tumor was found. But my GP has gotten very lazy. If it wasn't for Melody I wouldn't have finally gotten the referral I have been asking for for at least the past ten years. Right now, I wait to see Dr. Vandenberg and go through her battery of tests. And the tumors get monitored every six months to make sure that they are not growing rapidly. If they need to come out, or have friends that need to become distant friends I go back to him and they will be removed within 3-4 months. He did acknowledge that there may be a rare genetic disorder shared by Melody and myself. But he was kind without being patrionizing. I turn 50 next month. I'd love to have a big bash put on by people who love me, but I may just see if I can't rent a room on Melody's credit card and have myself a private little party, just me and the Black Dog. He is winning,slowly but surely, the black dog is winning. I doubt that anyone other that my husband and kids would come to my birthday party, and then only if they can't find something else to do. I'm abandoned and useless. What good is a mother when all the kids have grown up and moved away? I'm just tired.. It's been a long day and I'm not able to sleep well. My drink of choice was a tin of ginger ale. ~urp~ can't even afford a glass of wine cooler. Don has to reinvent himself from a low paid wage slave to a shop owner and find the self confidence to make it work. Chris has to find the white collar job he needs. Melody needs to find someone to love her unconditionally so she can get her dreams happening. as for me.. I need to be "reborn". I'm looking at 50 in less than a month's time.. the big 5-0. I feel stupid because I am stupid now. I've been deeply depressed with a dumb doctor who won't refer me to mental health 'BECAUSE ALL THEY DO IS HAND OUT PILLS". Since I'm getting more and more suicidal and I keep on getting turned down for help I really fell lower than snake shit. How do I reinvent me and what to? The old saw "anything you want" is too rusty to cut anything. I can't do much of anything physically. I can't do much mentally. I have very limited start up capital. Sure, sometimes I right well.. but not well enough to get paid for anything. agents want proven talent and my two books aren't enough. Maybe I can start myself up an internet based cult of some sort. I always wanted to become a religious leader. A saint I'll never be, unless it's a patron saint for house cats. I'm good at painting and building home base shrines. Who knows? I need a spa week of a hot springs pampering.. everything they have to offer. I will be lucky if I get taken out for a hamburger or someone will decide that it would be a great move to bring home a family meal of cold and onsale yesterdays left over fried chicken that will taste of the cheap plastic it's wrapped in. YUCK! I sure can do without it. Or like the past two years, Chris quietly comes upstairs with a huge cheesecake he lovingly made just for me.. a good ten pound weight gain for me to me sure. Sorry to ramble on and on so. I've finally reached the broken point, that place two traumatic points past the limit that the psyche can handle. I had been avoiding my birthday, but the family decided to rub my nose in it . Now that Don's income will be severely reduced, that we need to come up with start up fees, that I will have to decide which meds to cut back on or do without and go begging for others.. and it is I who will have to make my pittance stretch to feed everyone on top of my pills and getting me to and from appointments.. and through the nausea I have to find my ever eroding backbone and strengthen it ti get things done just to maintain the status quo.. while my clothes get more holes and my old shoes cause new blisters and bruises, the car's condition worsens and so does my scooter. I need an angel to rescue me as I have rescued countless persons before. I need a mairacle to show me the way to go. I do believe in miracles.. I've seen, witnessed and been part of enough miracles to know that they are real and true. But who will listen to me if I tell of my miracle adventures and invite others to tell of theirs? I'm not smart enough to turn it into profit for myself. As always, someone else would profit well while I go without. The Black Dog and the private room look better and better all of the time. It's what the 26th of January today? I've got 28 more days to see what happens. I just won't spend another birthday crying my heart out in utter dispair again. Hope your day is good Hugs Phyllis ;;:::::::::::::::::::::::::::::::::::::::;;;; From wo286@victoria.tc.ca Fri Jan 20 12:00:28 2006 Thanks Bente, I am so exhausted of body, mind, and spirit that every day is a challenge to just keep on going when I so just want to give up and be done with living. My life has been one challenge after another, once crisis after another, and I have been a rock for so very long.. but I feel eroded down to a tiny pebble right now. You are right, I am not dead yet. But I don't feel alive either, and I don't know how to get that feeling back. There are so many grief cycles overlapping like the waves of raindrops in a puddle. Just one one eases another one hits. I feel lost, so very lost. I don't have a safe and solid rock of any kind that I can cling to. I know that you and all of my list friends are here for me, but you are all so far away and each have your own hurts and problems to deal with. My world is full of broken promises and empty assurances. I don't know who to trust, what to trust in other than some day I will die as we all will. I so need a break from this world, even a short one. A spa weekend of total decedant pampering might be enough to reset my inner whatsit, but there is no money for such things in my world. I cannot even get down to the beach to yell at the surf, and the beach is all of two miles away. Melencholy, yes that I am. Not quite hopeless because I do believe in miracles. I am well experienced in them. But just because I need some/want them now doesn't mean I expect them to happen. Sorry if I'm bring you down. Huggs Phyllis -- From wo286@victoria.tc.ca Fri Jan 20 11:56:12 2006 Thanks Dianna, It's really weird, my doctor can talk "freely" with my daughter about my health condition in generalities and hypotheticalalities (is this a word?) but with me he gets all tongue tied and nervous. And because when he is with my daughter and they are discussing "my" problems they can go into hers in detail because hers mirror mine in a most eerie manner. So last evening over supper Melody was able to fill me in on our doctors thoughts, that he can't tell me to my face but can share with a family member. He's originally from South Africa and so old school in many ways. Melody did come across a couple of genetic conditions on the internet that may relate to our mother-daughter shared medical woes, both rare conditions. So instead of sending me off to see an endochronologist since both my tumors are on glands, Melody sees one on Monday. Thankfully this doctor is one she has seen before and Melody can get checked out for tumors. I don't know if BC Medicare covers the genetic testing. But if they find anything in Melody -then- I get a referral to look for more tumors in me. Meanwhile if the surgery screws up my glands further there won't be a specialist on standby who knows my case. Screwy, eh? And to make things stranger.. I got a call this morning from Dr. Pathak's nurse. He's the ENT specialist who wanted to biopsy the throat tumor due to the mis-read MRI scan. I have a referal to a gastroenterologist for March 10th with a Dr Daley. I was given a phone number and told to call that office for details. (?!?!) OK.. I called, got the answering nachine, left my name and number and reason for call. I've got no time and no address. IS this screwy or what? As for passing the hat.. I'm getting close to the point of going downtown and begging for change. This month the cost of my perscriptions has cut away on my tiny disposable income since my pharmacare premiums have gone up and I'm back down to the 70% coverage of pharmacare approved meds, which thankfully is most of them. But that is still $200, with a vet run this month and my eye tests that were not covered.. I'm broke. February is coming up fast and we need $ for boards to lay enough floorspace in the attic to put our storage boxes onto, $ for rubbermade type bins the right size to go through the trap door to the attic to keep the stored items dry and safe, $ for tools, $ for a phone line into the work room, $ for business name registration so we can get pst and gst numbers, and $ for a business licence. The business will have to start out as Don taking piece work home.. his boss did mention him doing that and getting paid a good rate for doing so.. and all else falling under a hobby for thre moment. But even there, our city demands licencing. They demand that garage sales be licenced! And here I am too sick to even get to the street corner in town to beg. The free wood bin across the street has not been put out all week. If it's not put out I can't get any tossed away wood. I don't even have the where-withall to work my bookstore website or to sell books via Amazon.ca. I can't sit up at the computer long enough and concentrate long enough before my vision goes wonky and a headache sets in. Then I really get depressed. I think I am really in need of a positive break-through of some kind to lift my spirits. Huggs Phyllis -- Date: Tue, 3 Jan 2006 12:12:48 -0800 Your prayers are working Now that my doctor is taking my health problems seriously things are happening. I had a call this morning from his nurse Karen and she had an appointment with a thyroid surgeon for me, on Jan 25th. They are trying to get both surgeries done at the same time, which would be much easier on my system than having to undergo two general anesthesias. All the material is being faxed over to the ENT specialist who wanted to biopsy the thyroid/parathyroid tumor instead of take it out in a timely manner. Now he has to take things seriously as well. I hope to have my daughter and husband with me when I see the surgeon. Melody is always full of questions and I feel more confident with her with me. I don't know if this fellow will be removing both tumors or if there will be two surgeons. I'll let you all know if/when I get an appointment with an adrenal/kidney surgeon. Huggs Phyllis >>>>>>>>>>>>>>>>>>>>>>>><<<<<<<<<<<<<<<<<<<<<<< JANUARY 2ND 2006. 1:00PM pst/ gmt-8 We had a nice Christmas, very cozy with a couple of friends from out of town and our daughter Melody staying at the house. It was nice. A monopoly game was one of the gifts and got well used on Christmas Day. I think I sat upright too long playing that game, my back ended up hurting horribly come evening time. I had felt pretty rough so went for a lay down about an hour after dinner and had a hot-flush-from-hell attack, or so I thought of it as. Nothing worth ruining a perfect family Christmas over. Boxing Day I felt weaker than I was expecting plus I was coughing alot so after everyone was off home and the afternoon brought with it worse coughing I had Don haul me off to the ER, where I sat from 4pm to midnight before I finally saw a doctor. He ordered up a bunch of tests, and soon ruled out a heart attack and some other things. The doctor suspects that I had a bit of a blood clot hit my lung, and the one blood test that could have ruled out a blood clot was the only test that came back abnormal. It was now 2am Tuesday and the test I need to check for a blood clot is a CT scan, which I wouldn't be able to get until morning at the earliest.. and an offer to spend the time waiting on a streacher in a hallway in the ER or go home and wait for a phone call with a booking time. So they gave me a shot of a heperain clone blood thinner and sent me home. Good thing I went home because the scan didn't happen until 11am Wednesday, the call came at 9am. I would have spent more than 24hrs in that hallway waiting! Meanwhile I'm hoping that there is no big serious problem about to cause me more trouble since I'm home alone with no idea what is going on with the doctors.. and I have the disadvantage of having consulted the internet so I have an idea of what should be happening but isn't. At the hospital, once I explained to the CT tech that I didn't know what I should be doing after the scan and why, she did a double check of the scan, then had me wait while she got the radiologist to take a look at it before telling me to head home and see my doctor about it at week's end. I did call my family doctor and made an appointment to see him last Friday morning at 10:30am. My doctor's nurse told me that I shouldn't worry, that if my condition was serious they wouldn't have sent me home. As it turned out on Friday... Well, it looks like I'm going to be getting a good number of "I'm sorry I didn't take you seriously". Don said that to me as he drove me home today. This old hypochondriac really does have something serious going wrong with her. I have a tumor in my left adrenal gland. A Pheochromocytoma. What was thought to have been a blood clot was an episode of my blood pressure soaring dangerousely high. That tumor is about the same size as the one in my throat at 1.7cm at the largest. It causes my adrenal gland to dump adrenealin into my system at odd times, and this can be fatal. So I am being sent right off to a surgeon to get it removed as soon as it can be arranged. There is the usual 10% chance of cancer, of course. But.. for the fact of that similar sized lump sitting between the thyroid and parathydroid.. which might just indicate that they are either 1)both cancerous or 2) that I'll have more of them on other endocrine glands. So the ENT doctor I've been seeing will be informed about this new tumor finding. Maybe the surgeon can remove both tumors at the same surgery. I doubt it, but it does make that biopsy ever more urgent. In the meantime, I just have to stay calm. Blood pressure medications do not work on high blood pressure brought on by that kind of tumor. I've got some Ativan to help with the anxiety attacks, which is all that can be done until the surgery. I am in stunned mode. I've done a quick bit of web search on the problem, and I can't say that I am very reassured by what I've read. Melody has done further websearching and has discovered that the tumors may have a genetic link and that she might well be susceptable was well. I may well have other tumors on glands or nervous tissue that will one day grow large enough to need to be removed. I'm angry that I've been so ignored symptom wise. I'm scared, of course. Stroking out or having one's heart explode are not nice ways to die. I'm not that upset about the thought of the surgery since it may be able to be laproscopically, but with the wait times in this province I may die waiting for it. The thing is a time bomb waiting to go off even if it's benign. I have to believe it is benign, and so is the one in my throat. Thankfully I have a family who is close, and who will make the time to take me off to the doctors as needed, and come up with the money for whatever drugs that may be needed that out drug plan won't cover. But staying calm is the hardest part right now. I must stay calm and do what I can not upset my adrenal gland so it doesn't do an adrenelyn dump into my system again. If I can remember to, I will update this Blog as I can. And if anyone is interested and I'm not updating you can send me an email to see if I'm still alive or if I end up as just another one of those folks who happen to die waiting for their life saving surgery. I have a feeling that I'll be one of those folks, the ones who die waiting. I have to wait for doctors to access my condition as critical enough to merit surgery as quickly as possible. I have to wait for a capable surgeon to be available abd willing. I have to wait for an operating suite to be available the same time as the surgeon is, and a bed open in the hopsital as well. Here in Canada we wait, and wait.. until we are either one of those blessed enough to get the surgery or we die and make room on the waiting list for someone else to move up a bit. Or if we have the money, we can see about getting the surgery done in a private clinic somewhere.. or even going out of country. But I am not a wealthy person, my family has no such resources to draw from. Only prayer and hope, and the prayers and hopes of my friends. It is a bad time of year to come down with a life threatening but not crisis-now condition. True, mine can go crisis-now at any monent, but until it does the medical establishment can see no reason for me not being at home. It's no different from a brain anyurism waiting surgery after all. If I don't hear back from my doctors by the end of next week I will be calling them to remind them. I don't believe in our medical system. I think that I will have a heart attack or stroke before surgery can be even arranged for to remove the tumor. I think I will be dead before this year is out. Many times in mt darkest moments I prayed for death. Now I just pray for a quick one. <*>>>>>>>>>>>>>>>>>>>>>>>>>>><*>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>><*> <*>COPYRIGHT PHYLLIS E. GRIFFITHS 2006 - ALL RIGHTS RESERVED<*> ~~~VALLEY OF SHADOWS PART WHATEVER~~~~~ ::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: ............................................................... ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, ''''''''''''''''''''''''''''''''''''''''''''''''''''''''''' ````````````````````````````````````````````````````````` /////////////////////////////////////////////////////// ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ \\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\ ;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ------------------------------------------------ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ {{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{ ############################################ !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ))))))))))))))))))))))))))))))))))))))))) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! }}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} ================================== ??????????????????????????????? +++++++++++++++++++++++++++++ @@@@@@@@@@@@@@@@@@@@@@@@@@@ %%%%%%%%%%%%%%%%%%%%%%%%%% ************************ <<<<<<<<<<<<<<<<<<<<<<< ]]]]]]]]]]]]]]]]]]]]]] ''''''''''''''''''''' ;;;;;;;;;;;;;;;;;;;; .................. ^^^^^^^^^^^^^^^^^ (((((((((((((((( *************** @@@@@@@@@@@@@@ !!!!!!!!!!!! oOOOooOOooO .......... >:>:>:>:>: .,..,.,.. ------- _____ -30-