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Post by kiki on Dec 9, 2007 19:35:19 GMT -5
I just read my post(update) and am cringing--kinda like making a call to an ex whe youre drunk except I cant even blame it on alcohol(used to have a couple drinks(or so!) but since the onset of this cant even tolerate the smell of it. I can only blame exhaustion from no sleep for 2 nights. I sure did use alot of words to say so little! My problem is keeping my thoughts organized. When I read other posts it scares me cause they seem so coherent and I just cant keep to the subject(am the same way when I talk). I never had that problem before. As a result Ive become hesitant to speak up cause even though I cant control it, Im very aware of it and it mortifies me. So... sorry for the rambling. I was thinking it might be better to have mutiple posts instead of trying to cram it all in one. Am gonna follow this with more of the black mold issue and then another thread about other test results. Thanks for being so patient and kind to me.
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Post by kiki on Dec 10, 2007 18:36:46 GMT -5
Hi all. The reason I was told to stop experimenting is because some of the stuff I tried causes imflamation of the soft tissue and he wouldnt know if I was inadvertently causing it or if it was from something else. He said he's a fan of Burts Bees products and suggested the Healthy Healing Carrot Nutritive body lotion and the Carrot Seed Oil complexion mist. Said the body lotion can be used on face. Both have balsam peru in them and I think Ant said he used balsam peru and said it helped him. At bedtime I use their lavender mist. Actually all of their products that Ive tried has helped. Last night I used the therapeutic bath crystals and more stuff came out of me than anything Ive ever used before. It has sea salt, lemon oil, baking soda, rosemary oil, eucalyptus oil and vitamin E. I even splashed it on my face and let it dry w/o rinsing and this morning my face was peeling and I laid a hot cloth on it till it cooled and when I wiped it off it looked like the first layer peeled off and my skin was so pink I cried b/c it hasnt looked so healthy in years. I hope it continues to help but I know theres a chance it wont keep giving the same results b/c even though nothing has worked as well as this, other products initially helped but after awhile stopped being effective. But who knows.
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Post by kiki on Dec 10, 2007 4:09:03 GMT -5
For what its worth I was told to stop experimenting. He was very kind about it and said he could certainly understand my need to "purge" myself of this and even said it was "criminal" that we were put in the position to have to resort to such extremes. Yep- a Dr. said that! Further he said alot of the stuff I tried was exasperating an already bad situation b/c it was causing imflamation or worse. He then looked me right in the eye and said "I wont insult you by sugar-coating--this is not going to be a quick fix but I will see you through this and that will include entrusting your care to my medical connections when necessary. I will trust you to help me do my job by letting me do my job and that means leave the treatments to me. If you feel you cant abide by that I cannot help you but I sincerely hope and believe you see the wisdom of my words." Then he grinned and said the milk "baths" are fine but are simply superficial. Im gonna trust him.
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Post by kiki on Dec 8, 2007 5:28:02 GMT -5
Hello to all from a worn out guinea pig! For the first time in 3 years I have honest to goodness hope. Im weaker than an over-done noodle but felt awful about not keeping in touch. In my last post I think I said my Dr referred me to neurologist familiar w/this and he referred me to a toxologist. Before he(toxologist) would even schedule an appt. he required all of my medical records from EVERY Dr and dentist Ive seen from no later than 10 years prior to symptoms, 4 pages of blood tests, multiple spectro-something MRIs, etc. and a questionaire so long that he now knows more about me than I do ;D and thats just the appetizer!! Seriously, if my Dr hadnt helped I dont think I could have managed it-she had 2 of her office staff work on it and it still took over a month to gather the info(releasing medical records is obviously not high priority to most Drs) Oh, also air testing of my house and surrounding area-not cheap let me tell ya,especially cause they found black mold in house-ouch-its a huge house and would probably be less to buy new house than have to just about "gut" it. But after consultations w/every mold abatement contractors in 3 counties(lots of them no better than thieves hubby hired one that hopefully is legit-they will pay for our choice of mold home inspector to test house twice yrly for 5 yrs after completed so sounds pretty reassuring. Its super depressing to have to be out of house over holidays-yes I know all things considered, its a small sacrifice but most of me is still human ;D and for years we were asked to be in the Christmas house tour and it feels like it was in another life-when my biggest concern was getting the decorations "just right"(sigh!). Oh poor poor me-Ha! Ok, enough of that-sorry for straying off subject. I have to get a lumbar puncture(joy,joy! but even though Im dreading it, will be a sport and be grateful someone is doing all they can to help us. But dang, those are some ugly looking needles they use... Theres so much stuff I left out but my mind is so scattered these days and I get distracted so easily and go off on a tangent(like this post). Now Im thinking I should just delete this and start over tomorrow but know that tomorrow I could be worse so will trust that you'll understand and dont think Im being evasive. I'll post more this wkend and will be more specific cause I think it will give real encouragement. Heres the thing though, I dont want to post some of it cause Im not at all comfortable sharing some of the info w/the world. Any suggestions how to share info w/just the trusted legitimate sufferers? My hand is cramping and my eyes are too tired to type more. Hold tight gang and dont be afraid to feel hope cause I do and this ordeal has made me very cynical. Sadly Im now "prove it".
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Post by kiki on Dec 10, 2007 1:02:24 GMT -5
One Dr. that Im seeing said the toxins from chronic lyme often cause hormone deficiencies that makes them lose water and salt becomes more concentrated in the blood which makes the sweat glands respond to protect blood from excess salt and when sweat dries on skin its a huge conductor of electricity. The amount of chloride in sweat is used to diagnose cystic fibrosis and usually patients with chronic lyme have more chloride than in cystic fibrosis
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Post by kiki on Dec 10, 2007 2:30:48 GMT -5
Gonna show my ignorance about this but here goes. My neurologist said lyme tests are apallingly unreliable due to the differences between strains of the bacteria and potential for co-infections. Also the bands used are based on a European Borrelia. He said its foolish to rule out lyme based on tests alone. So would this test eliminate those problems? Sorry if this is a stupid question.
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Post by kiki on Aug 24, 2007 4:01:05 GMT -5
As you know, Toni has relayed some info for me when I just couldnt manage to do it myself. Carrie- I didnt forget that you offered to talk to me too and bless you for that. It wasnt till I talked to Toni (rambled on and on is more like it) that I fully understood how I was hurting myself by my withdrawal from the world. In the first 5 minutes talking to Toni, I said something- dont even remember what- she said "I can hear the pain in your voice". Simple words that opened my eyes. I told her that I knew I was in a form of denial- told her my way of surviving this was by refusing to participate in life. It was like "if I dont live my life, its not really happening to me" so I'll just drop out and wait it out". i dont know if that makes since cause obviously it "just dont work that way". Her warmness was my AHAH moment. This isnt some dirty little secret I need to hide...I AM ILL. I am also a fighter. I never thought of myself as a quitter but I quit on me. Well...no more. Not gonna continue to take from this board without giving. Ive kinda been an all or nothing person but see the folly in that. I may not be able to change someones situation, but Ive been given far more in life than some and I can certainly help enough to make that situation more bearable. Whats the best way to find that person?
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Post by kiki on Aug 24, 2007 2:45:01 GMT -5
I have a referral to see a neurotoxologist. he supposedly has helped thousands of "written off" chronic lyme patients(victims is more honest) and the EPA called him to help with Katrina aftermath disaster. Has anyone been to one? At this point its nice to just be able to be sick instead of using the little energy I have convincing people to JUST LOOK. Pathetic isnt it?
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Post by kiki on Aug 19, 2007 17:28:14 GMT -5
That there is a difference between being bitter and righteous indignation!! I told Toni Ive thrown temper tantrums that would impress a tired, hungry and cranky 3 yr old! Also at times what kept me going was waiting for the day to rub some noses in their sanctimonious bull poooop ;D
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Post by kiki on Aug 17, 2007 12:42:46 GMT -5
That my faith and will are stronger than my fear...that I still have choices--sure I have moments of hopelessness that literally paralyzes me...BUT even though this abomination has taken what only another morgie can understand,and I know darn well this has the power to kill... I can choose not to let it make me bitter.
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Post by kiki on Aug 10, 2007 20:55:41 GMT -5
I had an MRI specto-something of my brain that shows some white matter so my Dr. (a believer from day one that its not mental) referred me to a neuro guy. I had such low expectations I rescheduled appt twice! I was so apathetic my hubby filled out the paperwork when we got there cause I was gonna leave much of it blank thinking it was a waste of my energy. Anyway when he asked me what my symptoms are I took a deep breath and tried to find words for the undefinable. I said "I have "hairs" that feel like spider webs, are only visible at certain angles in certain light and move-(they always go for my eyes). Heres the shock--he calmly looked me in the eyes and said "they arent actually hairs!!!!! I was so shocked I went into a stupid coma and just sat there occasionally nodding like he was talking about the weather. I NEVER ASKED ONE QUESTION which stunned my hubby speechless cause thats so not like me. It took two days for the rest of what he said to register. I want to share everything he said but its frustrating cause for some reason when I type I agonize over finding the "best" words to use and overwhelm myself--this from someone that made a living with the written word! Is there anyone interested enough that I could call and tell? If not I'll try to spit it out in bits and pieces. Im NOT being evasive--Ive tried to type this twice but was disgusted at how long it was taking me. Especially since Im rational enough to know Im not being rational Ive been so anxious to share everything hoping that this is encouraging.
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Post by kiki on Aug 24, 2007 4:16:07 GMT -5
Liz that sounds like me last year at a hotel. There was a huge birdcage right beside the elevators and I walked 20 floors to not go near it and had a hissy fit when I saw my luggage on the bellmans cart sitting right next to it. My hubby was furious with me...but went and got it saying "My wife has meds in there and as you can see, she is quite bizaare without it".
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Post by kiki on Aug 24, 2007 2:20:16 GMT -5
before an MRI or even a blood test you wonder "how can I stir up the morgs so they'll show up...
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Post by kiki on Aug 24, 2007 2:10:51 GMT -5
for the 2nd time you offer to whip the taiter when a friend says lunch is my treat
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Post by kiki on Aug 24, 2007 2:04:13 GMT -5
warm and "fuzzy" has an all new meaning
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Post by kiki on Aug 11, 2007 20:28:16 GMT -5
...you insist on "whipping the tater" when a friend takes you out to lunch...
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Post by kiki on May 1, 2007 22:44:57 GMT -5
Has anybody heard of Dr. Chichon? I think hes near Tampa area.
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Post by kiki on May 2, 2007 20:20:01 GMT -5
This black stuff was totally dry. I guess I just wanted to think that the spray suffocated some of it. It made me wonder what would happen if I kept getting the tan.
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Post by kiki on May 1, 2007 17:27:22 GMT -5
Ive been meaning to post some things to ask for your opinion but held back cause they may not have a thing to do with "theuglies" --but I cant convince myself to just write it off so...here goes. When I first started getting really sick, I had some upper GI test done and had to drink the chalky kind of barium. From the first swallow it tasted or felt carbonated and by the 2nd bottle it downright burned. They didnt make me drink the last bottle but didnt think it was an allergic reaction b/c I had it in the past with no problems. It also took much longer to flush out of my system. It might be a coincidence but what do you think? Also--has anyone had the airbrush tanning spray done? I had the full body tan and other than being incredibly sleepy, I didnt feel any different(it looked good too-no streaks). Now the weird part--2 days later my mom and I went out for lunch. The details stuck with me cause I had white capris on and asked if I had panty-lines in the bright sun! I did a slow spin and mom said that I was line-free and said something cute and sweet about my behind! We walked about 8 ft and she stopped me and ask if a pen or something leaked from my purse cause thare was a huge black stain on my outer thigh. It covered the whole side of my upper thigh-about 5" across and 8" long and was completely dry. I emptied my purse but found nothing that could have caused it. We were stumped. I never felt so much as a twitch. Mom took them home to see if she could get it out. She called me the next morning and said she never heard of such a thing but she had them soaking in some water and bleach and after a few hours got them to put in machine. There was a hole where the stain had been. She said just that spot had dissolved. Do you think its possible that the spray tan clogged my pores and killed something or am I just reaching?
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Post by kiki on Apr 30, 2007 19:45:13 GMT -5
Id like to offer another perception that I hope will bring you comfort. "If you do---(fill in the blank),dont come cryin to me"... My parents said those very words to my brother and I for as far back as I remember-many times, many ways. Did we ever for a split second think they must not love us? NEVER! (though we werent above trying to twist it to our advantage)! We had rules- we had consequences...and we had love. You words taught respect--to give it, to earn it from others and allowed Josh to learn self-respect. And guess what? Along the way, he developed respect for you. Now I know those words will forever taunt you when thinking of that night, but buffer them with the knowledge that when it came down to the wire, ultimately he DID feel safe to call you. And you WERE there for him. From the bottom of my heart I believe that Josh knew your love would ALWAYS outweigh any disappointments. I really do.
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