Topic: seventh surgery scheduled for tomorrow--updated sept 16
trails
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posted
All these surgeries are for endometriosis and related issues. They have all occured since 2004. Seven surgeries in 2 plus years. THat is a lot of surgery to fit into such a short time dont you think? And it aint over--I will have AT LEAST one more before the year is out not counting this one.
Tomorrow they will do another cystoscopy and then do an angio--ballonny-like thing to try to open up the ureter because there is a stricture on it. Most likely the stricture is a combo of left over endo and adhesions (scar tissue) from my right ovary removal on June 5th. SO they will cut the ureter and balloon it out to "break" the scar tissue and then put a stent that goes from my kidney to my bladder so that as it heals it wont constrict too much as it did before.
This will be the second stent this summer. (There are really too many S's in my life lately.) It is uncomfortable and at times downright painful, but having hydronephrosis (kidney swollen from backed up urine) is no picnic either--so I chose stent over swelling.
I dont like my surgeon. bummer. But he is a good guy and works at UC davis so he should be pretty good.
I thought I'd post this for those of you following my medical maladies and for those in the future who might be presented with similar issues. I now know kidneys too. I will learn the entire body one system at a time and because each system needs medical care. I call it "On the job training." hahaha. THe doc did ask if my background was in medicine. I told him only because I have attended The School of Hard Knocks for Lyme Disease Patients.
You all send up prayers, thoughts, meditations, good vibrations, anything positive you can muster my way, okay? And soon as I am better I will be sendin those vibes right back atcha.
To infinity and BEYOND!
PS--I havent even taken any pain killers yet.
[ 16. September 2006, 04:09 PM: Message edited by: trails ]
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Aniek
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trails,
Sending you all my positive energy. The little I've got right now. I'll take a B-12 in a few minutes to boost it up
I just had a date with a surgeon a few nights ago. If we work out, I'll keep you in mind.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Andie333
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trails,
all kinda good thoughts and prayers coming your way.
ANdie
Posts: 2549 | From never never land | Registered: May 2005
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cantgiveupyet
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Trails , im sending warm thoughts your way.
Hang in there!!!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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------------------------------ THe doc did ask if my background was in medicine. I told him only because I have attended The School of Hard Knocks for Lyme Disease Patients. -------------------------------
I tell people all the time that all they have to do to get an "education" in medicine is sit on Lymenet a few hours each day!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
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Oh, my steroid buddy....hugs to you....and prayers....and more hugs....and more prayers....and more hugs....
You are a brave trooper, and you are an inspiration with your sense of humor.
You go girl!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
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posted
Timaca, you wrote the most appropriate words for our dear online friend, TRAILS; she's got such a wonderful humor/personality that it shows up in each post/reply she makes.
Trails, my thoughts & prayers go to you on them being SUCCESSFUL to cure your problems.
I thought I had it bad with 12 surgeries to date; 11 since 79; boy have you got me beat? As if either of us really wanted them right? lol
Glad you got your vacation in despite your earlier June surgery, and could enjoy yourself as much as possible due to recouping from it.
You've got my thoughts, prayers, hugs, & kisses from this IOWAN to my New Mexico friend. Bettyg
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lymemomtooo
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Trails, good luck and a pain-free speedy recovery to you..You will be ok, you know..Pa. gals are tough!!
My mom had the balloon thingie and never had another issue..Never needed a stint..So, it alone is a help..lmt
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AliG
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I'm guessing you're either in or headed for surgery today.
My prayers are with you. I hope this is the last one you have to go through.
Then you can keep you chin up & your legs down (for the surgeons anyway). Ha!Ha!
Sorry for my lame attempt at humor.
Feel Better Soon!!!!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Well if some of this is due to lyme, insurance companies ought to be paying better attention to their bottom line. Does it make sense for them to discourage lyme treatment but then have to pay for an endless series of surgeries and other expensive medical procedures?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hi everyone. I am Trails' sister writing from lyme-y Pennsylvania. Trails wanted to let you know that she was admitted to UC Davis this morning. There were some compications with the surgery but she is hopeful that all will be OK - and hopefully soon. She wanted me to also tell you many thanks for your kind words and thoughts. Please keep the healing thoughts coming her way.
Also, for Melanie Reber - if you still have Trails' cell phone number she asks that you give her a call if you can.
posted
Thanks Trail's Sister, and Trails for taking the time and effort to keep us posted. There are so many uncertainties in the Life of Lyme that we worry about each other. We appreciate any word.
Big thank you for posting on an update on Trails. Sorry you were admitted to the duck hotel. I'll keep my thoughts & prayers headed your way Trails. Bettyg
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Melanie Reber
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I am so sorry that I JUST now saw this... thank you for the information, and I will call today if I can find the number...
If you get this reply some time soon...will you please email her number to me??? (see below)
Thanks, and all my prayers to your entire family, M
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Andie333
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trails sis --
Hello to you from tick-y PA. Thanks for posting the update. Please let trails know she's in my thoughts an dprayers!
Please keep us posted, will you?
Thanks!
Andie
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Melanie Reber
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OK...just went back through emails, and found the number...I will try calling her now.
Thank you! M
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lymemomtooo
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Trails, praying for a speedy recovery..Good luck..lymemomtooo
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Ann-OH
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Trails - Best wishes for a speedy recovery!
Melanie Reber
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Hello All,
Just wanted to give a brief update on Trails...
I am with her at the Hospital, drove in yesterday afternoon.
She is doing a wonderful job of hanging in there through what I can only suppose must be the worst of experiences.
Her partner and I are taking turns staying with her round the clock...so she is definitely NOT alone.
Yesterday, we were told that she will stay admitted until Tuesday...and they may do another CAT scan at that time. This is sort of a day to day thing...but we feel confident that her attending is a good doc, and her other docs are on board as well, so she really is getting the best of care.
We are asking for any and all well wishes, prayers, good thoughts, whatever you can muster.
My computer access here is sporadic at best, so please forgive me if it takes awhile to get back to you.
Just know that all of your thoughts are so appreciated, and have been relayed to our dear friend.
Much love, Melanie
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bettyg
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Trails, continued thoughts & prayers going to you/yours thru your current ordeal. May your health take a turn now for the BETTER and healing will come your way shortly.
Mel, thanks for the update on our friend, Trails! Bettyg
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timaca
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Melanie~ Thanks so much for your update on Trails. Do me a favor...lean over and whisper to her "No steroid shots, OK?" and tell her it comes from her steroid buddy Timaca.
Hugs to her and to you.
Timaca
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Trails i am sending you all the warmest and kindest thoughts, all the love in the world. you are in my prayers. I know you are strong and you will get through this. Lymies are fighters and you will fight until you recover fully. lot's of positive energy coming your way. we care lynn
Nal
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I just saw this today too! Im sending all my best to you Trails!!!! Many hugs and I am praying for you for a quick recovery.
Thanks Melanie for keeping us informed. You are such a good friend to be there by her side too and I am sure that means a lot to her as well. God bless you too.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Melanie Reber
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Dearest Friends,
I am hoping that Trails will be able to get on here very soon to give you an update...
but until then, I know you must be wondering what is/has happeing/happened.
So, I will give you a very quick one...
Things changed daily with her prognosis...and that led to daily changes on plans for her.
Finally, on Tuesday(?) (sorry, all my days are running together) morning, she was told that she would be discahrged that day, allowed to go home for a week to continue healing, and should return the next week for another CAT to see how things were progressing.
So, I left her Tuesday afternoon ater I was certain that everything that I could possible do was done, while she awaited discahrge.
I just heard through the grapevine that she is indeed home, and while still NOT comfortable...she is happy to be at home finally.
The other deatils I am sure she will share with you as soon as she is able.
I would just like to ask for your continued prayers and well wishes as she continues through this extremely difficult time.
Thanks to each of you for lifting her up in your thoughts and hearts...I DO know that this has meant the world to her!
Much love, Melanie
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lymemomtooo
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TRails, Hope things are better..Hugs..lymemomtooo
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5dana8
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Trails Hope you are feeling better soon
prayers and (((hugs)))
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bettyg
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Trails, HOME SWEET HOME never was a phrase so sweet after being in the hospital.
Best wishes on a full recovery girl. Bettyg
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trails
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i have been out of words to express myself and my gratitude to all of you for all your concern and prayers. thank you from the bottom of my heart.
Melanie reber (bless her heart and soul) came and stayed by my side until I kicked her butt out. Just kidding. But she did come and stay with me sleeping in the common room and checking in on me all night while my own partner got her very few hours of sleep at a hotel across the street. Melanie also helped in other ways that still bring tears to my eyes. I can not believe the kindness and self-LESS ness of some people. She, herself, could use a LOT of TLC and support, but she chose to come and provide for me. thank you.
I am home now. spent 5 days in the hospital. I ended up with peritonitis from my ureter leaking my pee into my tummy. It was beyond painful. My doc is a super star though and allowed my body to heal mostly on its own even though the docs on call were wanting to wizz me down to ER surgery and didnt let me even take a SIP of water for some two days!!!
I got 4 days of IV rocephin and ampicillin and have maintained on oral cipro the entire time, but dropped the rifampin for now--it was interfereing with too many meds. I am having lots of muscle pain and HUGE twtiches now--maybe herx or something frm the rocephin.
I have a catheter and a ureter stent and I am far from healed or out of the woods or even pain free. I stopped all pain meds coz they ALL started doing funny things to me--IV dilauted and morphine caused sever stoamch cramping and oral codienes all make me itch like mad. So i am just toughing out the pain. ouch. Things were easier in the hospital coz they are set up to deal with stuff and at home we are NOT. But we are managing. I leave for more testing tomorrow and then if it looks good I might get the cath out on tuesday.
One thing to remember is that if you get a catheter your cats will love you more. they think mommie's new tube hanging out of her is just a GREAT new toy for them!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
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ps---thank you all again and again for your thoughtfulness,kindness and for checkin in on me.
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lymemomtooo
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Trails, keep getting better..hugs lmt
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cantgiveupyet
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Hey trails, glad to see that you are home and hanging in.
Thanks for the visual of your cats and the cath....ouch....
I know when i had mine, and i only had if for one nite, it hurt like heck everytime i moved.
Sending healing thoughts your way.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Nal
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Oh Trails, I was actually just thinking about you today-no kidding! Im so glad I came on here to check this post!!
Are you sure you are doing ok? I really hope that things start to turn around for you very quickly! Please continue to keep us posted on everything!
I will keep you on my prayer list. Please, please take good care of yourself!!!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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bettyg
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posted
Trails, good to see you posting again! That's progress.
Glad you got Melanie there to help you/SO out so they could some quality sleep & must needed rest away from hospital.
Glad you got a good MD there. Blessings that things will go right for you finally. Bettyg
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Melanie Reber
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Good morning Dear One,
We are all waiting for an update as you are able.
Praying that the procedure went well for you, that surfer-doc did a wonderful job and that you are now cath-free!
Much love, M
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hopeful123
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hey trails,
just showed up to learn about your travails(sp?). You're why they say without bad luck, you wouldn't have any luck!
Prayers your way, my artist buddy.
love, hopeful
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Melanie Reber
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Dear friends,
Our Trails is still very much in need of prayers, well wishes, uplifting thoughts and encouragement.
Thank you for continuing to keep her in your hearts...
Melanie
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Melanie Reber
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As of yesterday late afternoon, Trails was back in the ER.
Her cath was pulled on Monday, but she soon afterward went into bladder spasms and unbearable pain.
When she was taken via ambulance back to the ER yesterday, they pulled a very large amount of urine from her, as apparently with time, she became unable to urinate by herself, and was once again experiencing the same problem as before.
The latest word from her partner is that they will try to admit her back into the same hospital, but on the urology unit this time.
I will be speaking with her later on day, and possible seeing them both again tomorrow if things have not changed by then.
Her pain level is being somewhat lessened with Demerol and other meds that she can tolerate.
PLEASE keep the prayers coming...
Melanie
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northstar
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Hi Trails, Special prayers are being sent for your healthy and quick recovery, and with gratitude to Melanie for her heart that is filled with generosity of love.
Northstar
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dontlikeliver
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Trails,
I'm late as usual in reading this (I don't venture too much out of medical).
I'm glad you're home now and hope you're feeling much better soon.
DLL
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trueblue
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Just got home... Prayers still coming...
Any news, Melanie?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Trails, I'm sorry for all that you are going through. You will be in my thoughts and prayers.
Melanie thank you for keeping us informed.
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bettyg
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Trails! ouch! I'm so sorry to learn you're back in the hospital with complications.
I hope they find/correct what went wrong so you can go home and HEAL!
Prayers to you/yours during this continuous time. Hang in there Trails; you've got the spirit to continue fighting for quality life. Bettyg
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Melanie Reber
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Good morning all,
I wanted you to know that I was able to speak with Trails a couple of times yesterday.
Once as the hospital staff were trying to hurriedly shove her out the door before she was ready...still in pain...still frustrated to no end...and still without the proper care or information that she needed.
The second time that we spoke again was much later as she was on her way home. By that time, she relayed the news that I had been praying for all afternoon!
She had been able to make happen what she needed to happen before leaving the hospital once more.
Our Trails threw a big enough fit that finally got her listened too! And in my opinion only, Divine intervention stepped in on her behalf.
A strong, compassionate and wise nurse appeared exactly when needed to take charge of her situation... and I feel confident now that Trails has exactly what is necessary to return home to continue healing.
Although she is still not out of the woods yet, she is at last on a good path. And for now, it is the best that we could have hoped for.
I am sure she will update you as soon as she is able to... Thank you each so very much for your continued strength and support.
All my best, Melanie
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Ann-OH
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Thanks, Melanie, I have been thinking about Trails a lot.
Glad you are able to keep in touch with her. I am sure she is glad too!
Carol in PA
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posted
Trails, I hope your recuperation will be swift and uneventful.
Besides, we need you at the Saturday chat.
Carol
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trails
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super special loving thanks to melanie for updating while i couldnt!
am home after another week at uc davis...partly out patient and partly IN. ug. I really didnt think the pain could get worse, but it actually DID. I didnt think my body and mind could take more trauma and more pain but they DID.
I couldnt tolerate having the catheter removed. First when I peed I had bladder spasms that are much like labor pains or ruptured ovarian cysts. the kind of pain that makes you cry out INvoluntarily. I scared many many people throughout my stay from people in the Kiwanis house, to the clinic to the poor folks in ER who had to hear me yell and scream and moan and cry for hours and hours.
so first were the bladder spasm which were treated with opium suppositories. let me tell you people--i never KNEW OR IMAGINED you could get so high from some thing you stuck up your butt. I called them my "stoner butt pills." and they worked for the bladder spasms but they worked too good. overnight they stopped me from voiding completely and in the morning I started having gawd awful pain again. it escalated so fast we had to call 911---I couldnt move or be moved.
Ambulance ride to ER. FILLED with seriously ill and dying people. very scary place. wall to wall gurneys of people who either WERE dying or looked that way to me. and there I was in that line. screaming and pleading saying pleeeeeeeez pleeeeez help me, help me for hours and hours.
took hours for them to get me demerol coz they dont carry it on the floor and all other pain meds I am allergic to. that is the biggest piece of crap I ever knew.
when my doc got out of surgery and ran to my bedside he catheterised me and 1700 cc's of urine came out in a matter of minutes. 600 cc's is considered to be serious urinary retention. I had almost 3 times that. the residents all looked at me like I had three heads--they had never seen such an overdistended bladder.
yeah.
so home I came with catheter again.
after an awful overnight in the hospital.
current plan is to get cath and stent removed BOTH on sept 27th.
this nightmare is lasting so so so long. I can hardly believe it is reality.
thank you all for your continued support and thoughts and prayers. I feel like coming here is like walking into my living room and sitting on the couch. thank you for making me feel so welcome and cared for.
-- thank you.
I hope you are all having some pain free and positive days. and if not, look for me--I am right there with you! trails
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Melanie Reber
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Good morning all,
Please keep our Trails in your thoughts and prayers today as she returns to the hospital for yet another surgery.
Much love, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
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Sending prayers and positive thoughts to my bud, Trails, for everything to go well and a swift and uneventful recovery.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Prayers for trails for a sucessful procedure and an end to this ordeal
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hopeful123
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-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Melanie Reber
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Good evening all,
I just hung up with trails...and she sounded great!
The surgery went very well, and she is expecting to head back home tomorrow.
I will let her fill you in on the deatils...just wanted to let you know that she is doing fine...well, ya know, considering.
My best, Melanie
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trueblue
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Thank you Melanie! I have been waiting all day to hear.
Way to go Trails!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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robi
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Thanks for the update Melanie ....... I just signed on to check for Trails news. Glad all went well.
Yea Trails!!!!!!!!!!! Glad you get to go home and all is going as planned.
Do you have any Green chile ? ......... that might help you stay well. I think it kills spirochetes and is effective against babesia.
If you eat it on a buger with with cheese it also kills bartonella. Really, it's true!!
Be Well, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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lymemomtooo
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Trails, so happy you are better and so sorry that I had not been on this post in a while..Things here have me in a bit of a frenzy. Got attacked by my lymie who was in a rage last night and it hasn't happened in over a year..Someone has got to find a cure for this Hell..
Have been on the board a few times but always in a rush and had hoped you had been ok..
Boy you have really been thru the wringer..And just the tick borne normal crap was enough..
May this time be the last and things work out ok..hugs..lmt
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hopeful123
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LMT,
sorry you are having such a rough time.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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trails
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hey you guys! you all are sooooo nice and sweet and thoughtful and compassionate and and and...well you dang near had me cryin here. for reals.
for an update on me I started a new thread called i can pee in the bath again. Although this thread now has 61 replies which is a world record for me. I feel very loved.
thank you.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trueblue
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-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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