[stevem53]

Hi Everyone..It has been a week of progress and blessings..It has been 3 days since the Drs at Cleveland Clinic changed Laura's med regimen, and for three days, she has been on her feet walking all day long..No cane, no wheelchair, no more leg cramping, no more lying in bed waiting for her legs to work, no more excruciating leg pain, no more despair..There has been some off time, but nowhere as severe as before..What Ive witnesses is what I would like to refer to as a miracle, but it is not..It is the work of a skilled, and thourough medical team, that took the patience and the time to listen and examine their patient..The Cleveland Clinic in my estimation lived up to their reputed reputation, and I would recommend them to anyone..It was well worth the trip out here

Through all of what we've been through these past two months, Ive learned alot of things about myself, about life, about hope, about dreams, and about God..Without trying to be a braggart, or to be cocky, or to pat myself on the back, I have learned some good things about myself..Ive learned alot about giving since God intervened in my life 19 years ago, and ended the madness, and the darkness that was my life through alcoholism and drug addiction for 23 years, and brouught me on this spiritual journey of self discovery, purpose, and knowing God..During the past two months, since I got off that airplane in Seattle, and met Laura, alot has happened, alot that I havent written about, and havent told anyone about..I met someone who has had pd for a very long time..someone has suffered with it for many years..someone who was robbed of many years of life, because she was imprisoned in her own body..After seeing the limitations that this disease had imposed on her during those few days I had been with her, with no help or support from nobody, I knew that I couldnt go back home after two weeks like I had originally planned to, and leave her alone to fend for herself in the condition she was in, so two weeks has turned into two months..I heard Laura many times during a hard down htat she couldnt go on like this anymore..There were more times that I can count that I was at a loss for words of encouragement, because I could see hte pain she was in, with legs cramping that would not let up..She could not stand up, at times and walk one single step..And there were more times than I can count that I litterally carried her to bed, because it was easier and faster that holding her up while she tried to walk to a chair, or to the bed..I tried not to lose sight of hope myself, but it became harder and harder as time passed..There were two trips to the ER at Cleveland Clinic that were disasters, and begged the question.."Is htis what we have to look foward too?..Is this the crap we traveled all this way for?"..Me with dropping everything that was my life back home to help someone in need, and Laura in the middle of a crisis back home, divorce etc, and not having a home to go back to, but the need to find some answers to her failing health, and hopefully some relief, had become more important that anything else, and she had put all of her chips in the middle of the table, in the pot, for that one opportunity that may or may not come, and I stayed there with her, and went through the bittersweet roller coaster ride, and gave everything I had in me, and everything I had to offer, to help her get that opportunity to get the relief that she humbly prayed for on so many occasions..There were many, many times that we laughed, and had some moments to remember, and cherish..There were others that we cried because of the relentless suffering..There were times when I cried in private because I had to be the source of strength, and there were other times we were at each others throat, because the stress, the anxiety, the fear, and the uncertainty was more than we could handle..Somehow we managed to get through all we had been through, and on the third clinical appointment at the Cleveland Clinic, the day after Laura began her new med regimen, we left the wheelchair in the truck, and she walked to hre appointment, and when the appointment was over a few hours later, she walked back to the truck, and we left..During the past 3 days I have not had to help her do those simple things in life that most of us take for granted..She can do them herself now..I no longer have to watch her every step in fear that she may slip and fall..We went to Friendly's for ice cream the other night to celebrate, and I didnt have to get the wheelchair out of the back of the truck, and then leave before she could finish her ice cream, cuz she was starting to crash, and had to get back to the hotel and crash..As we left Friendly's, and she walked behind me, which was definately out of the ordinary for that time of the night, almost verbotten, I realized that through my selfless sacrifice, I helped someone change her life in a very profound way..I witnessed someone get set free from the imprisonment of her own body, and walk through its gates a free woman with all of the God given blessings of a new life..I watched her swim in the swimming pool at the hotel this morning..So never..I repeat..never give up on hope, even when you are sure there is none..This is a dream come true, that Laura had prayed for, for most if the 24 years she has had pd..She has a form ofpd, not in the advanced stages previously thought, hampered by an anxiety disorder

I went to an AA meeting the night before her first appointment..I was as much as I hate to admitt it, about spiritually bankrupt at that point from all we had been through, and I needed to go to that meeting badly..The name of the group was "Home away from home"..How appropriate I thought as that through that cooincidence I felt the presents of God there as my eyes welled up..I knew he was watching over me/us through all of this, and that everything would be alright, somehow, and it was

This morning we got up early and headed for Rhode Island in the snow..They forecasted one inch, but after driving 50 miles in hte dark we had to get another hotel room..We will head back out tomorrow

How was your week?

[paula_w]

wow....finally the relief you both deserved. I like happy outcomes. Thanks for sharing the whole thing, including your faith. I have plunged into Bible study and appreciate the amazing wisdom on those pages. I also heard a new Catholic joke about Jesus. In the story about people getting ready to cast stones, where Jesus says, "he who hath no sin cast the first stone", He gets slugged by a stone, turns and says, "Oh mom!"

It's not a test, or an attempt to be offensive - just a joke. Laura I would love to hear your med regimen unless you'd rather keep it private.

I wish you both a holiday filled with peace and good will.

paula

[Evonne]

Steve,

I am so glad to hear that Laura is doing so well. The message of hope in your post is very inspiring, especially right now.

I spent the night in the hospital last night and found out that I have a 5.5 centimeter endometrioma on my left ovary. If it bursts it will spread endometriosis all throughout my abdomen. Did I mention the pain yet??? I had both of my kids using natural child birth with no medications. I have a pretty high tolerance for pain, but last night I was crying like a baby.

I had a partial hysterectomy two years ago due to fibroids and adenomyosis. The doctor left my ovaries and cervix in place. I am the one percent of his patients that has continued to have bleeding problems post hysterectomy. Now, it looks as if it is time to go back in there and get it all yanked out. I am done with all of these female problems. I am hoping that my doctor will get me in early this week so that I can be home with my family for Christmas, but they are back logged because they had to shut the ER down because of the winter storms. They are only doing emergency surgeries right now. I am not sure if being drugged out on pain meds and curled up in the fetal position for a twenty four hour period qualifies as an emergency to them or not!

Keep me in your prayers.

er was very inspiring to me, especially right now.

[jcitron]

Originally Posted by Evonne

Steve,

I am so glad to hear that Laura is doing so well. The message of hope in your post is very inspiring, especially right now.

I spent the night in the hospital last night and found out that I have a 5.5 centimeter endometrioma on my left ovary. If it bursts it will spread endometriosis all throughout my abdomen. Did I mention the pain yet??? I had both of my kids using natural child birth with no medications. I have a pretty high tolerance for pain, but last night I was crying like a baby.

I had a partial hysterectomy two years ago due to fibroids and adenomyosis. The doctor left my ovaries and cervix in place. I am the one percent of his patients that has continued to have bleeding problems post hysterectomy. Now, it looks as if it is time to go back in there and get it all yanked out. I am done with all of these female problems. I am hoping that my doctor will get me in early this week so that I can be home with my family for Christmas, but they are back logged because they had to shut the ER down because of the winter storms. They are only doing emergency surgeries right now. I am not sure if being drugged out on pain meds and curled up in the fetal position for a twenty four hour period qualifies as an emergency to them or not!

Keep me in your prayers.

er was very inspiring to me, especially right now.

Evonne,

I have you in my prayers and my kid sister does too. She just went through this herself, but is a lot younger than we are. She said death is better than this, but being that life is, we're not granted an easy exit when things get tough. Speaking of winter storms, we've got about 3 feet of white stuff I think up here in New England. This started last Thursday with and ice storm that knocked oiut power in the area for a week. It has since snowed just about every other day since then and we're due for more again tonight and then ice and rain Wednesday.

And get this... some people in my house still don't get it. My brother tells me to use the snow blower to dig out. No problem if I could start the thing. The PD makes the muscles move too slow. I have plenty of strength and lift up to 80-plus pounds sometimes during the day at work. It's the quick movement needed to start the blower that I don't have. So shovel in hand and two hours later, I have my car dug out and ready to go to work late.

Hang in there.

John

[Evonne]

I just wanted to let you all know that I went to my appointment with the Gynecologist and it was very frustrating. I told him that I want everything taken out because I have nothing but problems. Then, he went on and on about the consequences of losing ovaries. Mood swings, menopause, dry skin...the whole works. Basically I felt like he was trying to talk me out of it. I told him that I understood all of that and I still want to remove my ovaries. As far as my cervix goes, I am considering leaving it in. The pelvic support that it provides is very important.

I think the thing that gets me the most is that I can't have the surgery done until January 5th. What I am experiencing is not an emergency according to them. It is an elective procedure. I asked what exactly would make it an emergency. The answer was if I lost a lot of blood or my abdomen became distended, hard, painful on both sides of my abdomen and inability to have a bowel movement. I am not happy with the medical system right now. What ever happened to treating the patient and helping them feel better??? I feel like I have a little bomb inside of my body and I am just stuck here waiting for it to blow.

Oh, as far as my fever of 102 is concerned, my urine showed a UTI. He put me on antibiotics for that. He also told me to stay on top of the pain and take the Percoset as prescribed...never mind the fact that I feel like a dead headed zombie!

Well, that's all for now. TTYL,

Evonne

[Jaye]

What did I tell you about this guy? A true gentleman, right? A terrific friend, yes? Oh, how I love being right!

Sorry I missed your call. Is it too late to call you now? I'll be up till 11 EST.

Jaye

[lindylanka]

Would like to wish everyone who visits here ( the ones I can see and the ones who do not post but visit quietly ) a peaceful happy holiday and a good year in 2009.

Evonne, Hope everything works out well for you, and that you have a good holiday despite everything; Stave and Laura, I have been following your story and am so pleased that there have been good outcomes out of what has been a very anxious time for you both...... your courage and strength has shone through. Jaye, Paula, Carey, Rick, Ron, Ann, Girija, Chasmo, Fiona, Peggy, Aftermathman, Dr John, our moderators, and all the others who make this place what it is, thank you, you have been a constant inspiration........

I don't post here often because my life is pretty mundane , but this week has been exceptional for several reasons. Five days ago we took in a young toroiseshell cat who came to our door very thin and starving, she is keeping me very entertained, and I am hoping so much that no-one will claim her. She has me hooked already!

On top of this my highly dysgraphic son, now 17 and in college, came home jubilant having made a pitch to make a film documentary as part of his course.....his tutor rated his presentation as exceptional.....he never had success in school, absolutely hated it, so this is sweet.

This is usually a very difficult time of year for me, I dread it, but this year a wonderful friend made it possible for me to go on a short intense meditation retreat with my Tibetan buddhist master as an early gift. It has helped me cope with my own mind a lot better - and was in all respects a very good and special few days. I live a very quiet life, but this gave me the opportunity to reconnect with some of my favourite people. I would not have made it there if not for my friend who has had thirty years with MS and has taught me so much about living with a long term condition.

I also made cake, about a month later than I should have - I know about fruitcake and americans yes Laura, in England people do sink that low!!! - mine comes from an 18th century dutch recipe, via the spice islands - you could imagine a woman from one of Vermeers paintings stepping over to her food safe and unlocking the precious nutmegs and spices, gathering the ingredients and instructing her cook on how to prepare it, and how to infuse it with brandy....... my house is redolent of this undertaking, and people come from afar to taste it every time I make it! Truly..!! I lived in France for a while, and sent one to my brother in the States. I had to declare the contents of the parcel at the post office, so put 'gateau de noel' , it got passed around from person to person, the whole place was rocking with laughter - it weighed about 3 kilos! I guess a French gateau is a much lighter confection!
In fairness is is eaten in very small pieces, which somehow takes away the feelings of sugar induced guilt.......

I shall quietly raise a glass to you all on Christmas night.............. for blessings in abundance and that all your wishes be fulfilled..........


Lindy

[Chicory]

Merry Christmas! I hope everyone is able to enjoy the holiday.
Evonne- I am saying a prayer that your pain will subside and you can enjoy the holiday with your family.