Wednesday, July 22, 2009

H O P E ! !

HOPE is a small little word with a powerful punch!!

Don't ever ask me what I had for breakfast any given morning, as there is probable little hope I will be able to remember. However, ask me any time about 5:00 p.m., August 15, 2005 and I can not forget that very moment. This is when I had for the very first time heard, "So sorry Deborah, nothing more can be done"!! I had just transferred into my home, after sitting in a Court Room almost all day watching the prosecution of my sister and her decision to break into our home and rob us, while I had laid with full life support keeping me alive 120 miles away in that past year!! While experiencing many emotions and feelings never previously ever considered, much less ever considered I would have to deal with, I was handed off, by one of my attorneys, my ringing telephone. I then heard, "so very sorry, Deborah, there is nothing else that can be done" for the first of many times to come!! Unfortunately, at that moment I was being told Max was gravely ill and our general practitioner had come to the conclusion nothing else could be done!! We were ultimately given about six months more life expectancy, unless a donor transplant could be found!! And, thus my fight for Max's life began!!

I can not remember each battle, and truly do not want to. This has been the longest four years of my life. It has been one long series of wins and loses!! I am sure I could put them all together, but it would take days and it matters to me little at this time. That is, unless I could turn them into the "Television Movie of the Week" and make my first million on another very badly chosen script!!

I think every one knows I have pretty much been on complete bed rest for the better part of the recent months. I recoup a little bit, just to be hit with some thing else to take me two more steps in reverse!! Last few days have not been good!! But, nevertheless, good ole Uncle Sam sent additional greetings demanding my presence at yet another pre-transplantation "conference"!! Realistically, Uncle Sam, a.k.a. Veterans Administration, is looking for a "nice" way to say, "so sorry, Mr. Markham, but we can not transplant a liver and kidney in you because........."!!
Well, to put it as politely and nicely as I can, "Over My Dead Body"!! Max and I have had more than our share of "ups" and "downs" with our relationship. However, had it not been for Max my butt would still be rotting away in that "hellhole" of a Nursing Home I had been placed in!! Also, apart we both just have long and hard struggles, but together we can not be broken by any thing or any one!!

Thus, we had to be on the road again this morning, headed west the 90 mile trip, to the Veterans Administration Hospital!! I was in excruciating pain and overly tired before we got started and every mile just became worse!! I was primed and readied by the time we arrived in Iowa City!!

We were just there about two months ago, when I spent a grueling day going through what a team of six psychiatrists thought would be role-playing which I put an immediate halt to!! This day then went to one scenario after another of a game "well, if this happens, what will you do, and if that happens, etc., etc., and etc.!! After six hours of this, the plan was to put me through a three-hour series of memory and agility testing!! Good Grief!! What part did not these "overly educated a$$es" not understand that I am on more morphine daily then most people ever encounter in an entire lifetime and I am in a wheelchair?!! About noon this day, I finally raised my voice to just an octave below screaming at them "enough"!! I would meet any thing presented to me and either handle the situation by my self or place people back on payroll to handle it for me, BUT every thing and any thing WOULD be taken care of!! I further told them I would rather be headed back east home than spend another three hours repeating myself!! Suddenly, we got a previously unscheduled recess. Max and I left the hospital and found a wonderful little deli and had a delightful and leisurely lunch.
Upon returning to the hospital this six panel "whatever" had disbanded and word was left they were done with me!! Max had to go on with about two more hours of testing!!

During this time, I had suddenly been scheduled with a pair of Social Workers (we all know how I "love" Social Workers - NOT!!) while waiting for Max. I was informed of several things at this time, but the only thing that remained in my memory was my having to stay in a hotel for about six weeks alone and then an additional three weeks in the hotel with Max "if" a transplant was going to take place!! There was much other information given to me, at this time, but every thing was lost as I knew six weeks alone in a hotel having to commute back and forth each day was all that I could absorb. It was one of the first times I felt "not a chance and no hope"!! Hopelessness is not some thing I will ever accept "gracefully" and I come back "swinging"!! I had come to the decision of simply "Whatever"!! "What ever" could they do to me to MAKE me stay nine weeks in a hotel!! I do not handcuff to a bed rail easily!! So, "what ever"!!

I had a rather "uncomfortable" few days!! I then was once again able to get ahold of my self!! I personally, very much, do not believe in fear. Fear only gets a life, "if" we give it one!! And, I have learned so very much from knowing Eunice. One of the big things, I had to work on was worry. Fortunately, Eunice has been working on this problem with me for several months and I have learned from experience not to let worry come into my life, until it truly comes in and not a moment before!! These things coupled with my deep belief in prayer carried me through!!

However, a few weeks ago, we had gotten another "letter" to be at the Veterans Administration Hospital!! A friend took Max and I stayed at home. I was happy as a clam, having nothing to do or any one around me at all!! Max returned home much sooner than I ever expected rather upset!! The staff at the Veterans Hospital refused to go any further with this Transplant Process with out my presence!!
Personally, with my attitude coupled with my pain levels, I would have advised them to "rejoice and be glad" I had not went along!! Nope!! Every thing had to be re-scheduled for today!! Okie Dokey!!

Thus, this morning at 6:00 a.m. we were up and making our way back to Iowa City!! I am speechless to describe my attitude and demeanor of today!! It was plainly the worst ever through this entire "Process"!! Max had the usual tests and moderating. I had a bad incident prior to leaving my home this morning - I could not put my hands on any Aida cross stitch projects!! I had simply forgotten I needed my "Mighty Magnifier" lamp to use any thing other than Aida!! First appeared nothing to "tame the beast"!! Then, I sudden saw a glimpse of a 3-D Christmas Card I have started on perforated paper!! Such relief!! Without realizing it, I have pushed all my Aida WIPS to the very back and deepest bottom of my WIP area, as I have absolutely fallen in love with linen and evenweave. Big problem for another day!!
We got on with our drive, and I started thinking about all the members who post about stitching while traveling. I never used to be able to read, do puzzles, write, about any thing while riding in any thing with out consequences of car sickness.
This was some thing I really did not need, but this was the kind of morning to push all limits!! Thus, I pulled out my perforated paper and supplies and began stitching on my "Snow Globe". I do not know what peaked my interest, but suddenly I realized some thing simply did not look right!! Thus, I just stared at my piece of perforated paper contemplating how to make the "cut-outs" for the 3-D Card. Good Grief!! I had started the "Snow Globe" design the wrong way on the paper!! I suddenly calculated needing 22 squares more above my stitching, while I only had 15!! Well, as my father always used to say, "you can not make applesauce, out of horse shXX"!! Sorry, just that kind of day!! Thus, some one will be getting a "one and only" snow globe stitched insert in their Christmas card this year!! There was nothing or no one who could possibly ruin this day any further, so I amazingly took it in my stride and just kept on stitching!!

Max finished up his business by about 10:00 a.m. and the "Social Worker" who had requested to have my "presence" had made an appointment with us for 1:00 p.m.
Thus, Max and I got back in our van and found a Perkins Restaurant for a fantastic "brunch"!! We just took our time!! I casually mentioned trying to find a LNS, but this idea went over like a lead balloon!! I do not know if Max had a LNS on his agenda or not, would bet "not", but as he was trying to maneuver my wheelchair from under the table he just barely scraped my leg. I initially did not even give it a thought!! A lady sitting at the next table stopped me and asked if I knew I had been injured while being pulled out from the table. I could not figure out what she was talking about, but decided to look down at it and only saw massive blood!! It takes little, or nothing, to get me to bleed on "bloated" days like this and bleed I did do!! Unfortunately, we had to spend a considerable amount of time on clean and patch up duty before any thing else!! Thus, we went back to the hospital and we sat out in the sun for a short time. It was only high of 64 degrees and wetness after a rain day, so the sun felt so good!! Finally, it was our scheduled time!!

We arrived at the Social Worker's, Carol, office right on time. She asked that we just go into some empty exam room to wait for her to finish her lunch!! Yeah, sure, take your sweet time lady was my only thought!! I had not actually seen this woman yet, but only had heard Max's rants and raves about her the past two weeks!! There was a large portrait of all the Transplant Staff on the wall. I told Max we could start the games early by letting me try to pick out our new "special buddy" from Max's clues on the portrait. First guess, I got her!! Well, that was not too entertaining for very long!! Well, another stitching break. I managed to get all the many "snow" confetti stitches finished!!

Carol finally arrived in our new "conference" a.k.a. exam room about 1:15 p.m. She then proceeded to sit on one hand to the other in an attempt to write and also keep warm as the room was so cold!! Finally, she simply had to go find a sweater as she was just too cold!! I was going to offer mine draped over the back of my wheelchair, but you never know about Max and my quick departures where there becomes a need!! Finally, we got yet another interview, that I alone have already been quizzed over at least a dozen times!! Thus, I just decided to ask whether that computer "thing" she was working on was incapable of reading the notes the last twelve interviewers had made so it would save us all a lot of time (oh, the urge to just say "a lot of valuable stitch time)!! Well, yes it did and she did not know "why", but just she had to fill out the forms completely!! I just gave it up and went back to "my" old reliable "what ever"!! Well, she was very worried about my safety as Max's "Support Person" so could not our "Back Up Support Person" step up to his "Support Person" and we ask some one else to be his "Back Up Support Person"!!
Well, it took me a minute to unravel all these "Persons", but I told her I could very assuredly tell her "NO, that most surely would not happen!!" Well, did I mind "sharing" with her why not? I told her I did not mind in the slightest, as we simply did not have a "back up support person"!! What about possibly a grandchild? Well, if we would have had children, which we did NOT, they might have responded, but I was quite sure "grandchildren" were out of the question!! Now, I got a bit miffed here as you have to be 18 to be considered a "support person" - I asked just how old did she thought we happened to be!! Oh yes, guess I would be correct then!! Much discussion ensued, but the subject of a "Support Person" was lost in the big tangled mess!!

Carol went on to quiz me over the possibility of us asking a potential donor for their kidney and/or section of liver!! I had ended our "Support Person" discussion with it was Max and I against the world by OURSELVES and we had long ago accepted this and possibly Carol should also move her mind set to this!! I truly thought this was "the point"!! Carol wanted me to be sure there was not a friend, possibly a person Max had worked with, etc., etc., etc.!! Can you even begin to imagine hearing, "Uh, Hey, Deb!! You know you and I have worked together a long time, you think you might not miss a kidney and/or part of your liver?"!!!! NO, I can not even imagine such a thing!!

Well, I started not believing a word this woman had to say to me!! However, I walked out thinking God had placed her especially right in my path to watch over us!!

Carol has above and beyond promised an end to this insanity by mid-October!! At that time, Max will finally, just over four years later, be placed on the National Donor Organ List!! I was busy thanking the Lord, when I heard "Um, now Max has Type O Blood. That will place him 3 to 5 years down on the list, give or take a circumstance or two!! I immediately begin to think, Carol, Max is Type O Blood which is almost the universal blood type!! Where in the world are the rare blood types on "this list"!! Well, Max will be placed on the National List retroactive back to June 16, 2008 as this was his dialysis start date!! Why can I not shout "Happy Dance" on my rooftop?

Carol "assured" me that she would be placing in the record and having held on "stand by" a private ambulance service to transport me to and from the hospital each day as they do NOT have any vehicles that have access for a person to be transported in a wheelchair!! Carol says I will only be required to stay 7 to 10 days in the hotel alone and when Max is discharged from the hospital we would only have to stay another week or so together at the hotel!! She said I was required to stay in Iowa City to "support" Max's getting up to walk several times each day immediately following his transplant as the staff is too busy to make sure each patient is assisted and does this walking several times a day!! I absolutely QUIT asking do they not see me as a disabled person in a wheelchair that does not walk herself, much less support a man walking immediately after surgery!! She said if I needed further "help" at the hotel room the hospital would provide it. I ask again, perhaps they should provide this "help" for Max where it is needed and could be used!! I will be glad to go home and just get the heck out of the way!!

I was completely stunned with Carol's time frame, hotel "help" and actually knowing Max will be listed on National Donor List finally!! She went on with so many other details and I am lost as to almost all of them!! I keep questioning Max if I did not have a day where my morphine had gotten off balance again!! I am continuing to question this entire day!! Max keeps assuring me this is a perfectly normal day for me and I am having no "episode"!!

And, as we progressed on, Carol discovered Max's Vie Nam tours. These have virtually went totally unaddressed for all these years and now suddenly she told us we were entitled to an extremely substantial amount of tax free income also from these as Max did develop prostrate cancer some years back!!

Carol seemed very dedicated to her job and also very proudly told us she was very sympathetic to the Viet Nam veterans!! She convinced me she was totally knowledgeable about all aspects of the different Veteran's Acts and all the Rules and Regulations. Why can I not bask in the wonders of the possibility that we have finally won this battle I have appealled, appealled and appealled?

I guess all I can do is now sit back ,pray and HOPE!!

Love and Hugs!!

Friday, July 10, 2009


Good Evening to All:

I have a quite lengthy entry to night, but I truly do not have the words to express what I am really feeling!!

I have been on bed rest all week as I am having some problems the doctor simply says "Watch very carefully. Either some thing else will happen or a "bug" will run it's own course"!! Famous last words the last two times I found myself being rushed to emergency surgery during the night!! But, I do feel a bit better tonight and am hoping and praying the "bug" passed!!

I have been in total bed rest for approximately the last three days, but sort of feel like what ever it was has passed, I hope!!

Yesterday, I answered my telephone and heard the words Evalina Zamana and stopping by!! I got instantly very excited, but knew there was absolutely no time to do much than get me out of my night gown, run a brush through my hair and have Max get me seated comfortably on my new deck to wait for the expected visitor. I had already reasoned through my mind that Evalina would have been talking about an impending vacation long ago and I would have been notified if she was going to be any where in this area!! But, I was very groggy and confused!!

Soon a strange car pulled into our driveway and I certainly did not recognize her!! She was dressed very nicely and was very, very nice. At first, I just wanted to jump up and hug her and welcome her as I had thoughts now crossing my sleepy mind that it just might be Evalina!!

Well, I need to step back and give others a chance to catch up with this whole story as they deserve to understand every single part of this!! As most know, Rene is holding a new Hardanger Class which is just beginning. At first, you were required to sign up on the database and post a photograph of your supplies needed to complete the Hardanger Piece that was chosen for the class to do!! At the bottom of the Supplies List was "a supply of chocolate to calm nerves when we get to the point where you have to cut the Kloster blocks"!! I thought this funny, but knowing me it would just be some thing else that could cause a mess for me and get smeared on my endeared project so I stupidly omitted my supply of chocolate!!
However, on Evalina's Supplies Picture posting, she had all kinds of various very good and tasty looking chocolates!! At the time, I thought "I would have killed for that selection of chocolates pictured"!!

And, off we began Lesson One this past week of just making the outside row of Klooster Blocks!! Okay, some day this will be an extremely easy thing to set up and I will laugh when remembering all the troubles I had trying to get these blocks perfect!! I did not actually go in to the database to check, but it seemed to me that I was the only one not done with this week's assignment!! Shortly, Lisa N. posted she had not been able to finish either at that time and that she was going into the corner in shame!! I popped in and told her to move on over as I would be keeping her company as I was in shame also!! Not too long later, Evalina popped in and asked if there was room for her in Lisa's and my corner. I replied surely and we would be glad to make room for her if she brought the chocolate!! Well, in a bit longer time passing, I believe Lisa, Evalina and my self had a "brain fart" and the light bulbs went off and the three of us were able to leave "OUR" corner and go to it and got the Lesson One finished!! I kept thinking, I sure hope Evalina left the chocolates in "OUR" corner for "insurance" of the rest of the Lessons!! I had the feeling the three of us were going to become very good friends just from our collective corner times for this project!!

I had no more real worries except was I going to be able to go to "Our" corner of shame in time to at least drown our sorrows in chocolate and nuts, and ohhhhhhhhh luscious caramel!!

Well, I was in bed, following my doctor's orders to the tee this time. Any possible chance of another surgery does wonders for my behaviour in following doctor's orders!! My telephone rang and I answered it very groggily and only truly understood the words "Evalina Zamana" and "coming to visit"!! I immediately began to yell for Max to get me up and make me look a little bit better, but it was not pretty!! He placed me out on our deck as it was cool and a light breeze went across it!! Max continues to seal our inside of our house up equivalent to a bomb shelter so no cool air can get in no matter what. He runs around this home in his long winter underwear, two sets of sweats, and a jacket and cap!! He drives me crazy!! With my illness, it is some times been described best that you need to imagine all the blood in your entire body has been drained out and a lighter fluid has been replaced for this blood and then some one ignites the lighter fluid!! I literally feel that my body is in the middle of a bon fire and I am being burned to death 24 hours per day, seven days per week!! It is excruciating in pain and I am just hot, hot, hot!! Even in the winter nothing pleases me more than to wear my regular shorts and a light top with no shoes - flip flops if it is absolutely necessary for me to go outside!! This happens all through each of our bitter cold winters also. Thus, my front deck is the safest and coolest place in this entire home 99% of the time!! Thus, Max settles me into a lawn chair and I wait. Max kept asking who or what I was waiting for!! And, I honestly could not tell him, even though this very nice lady had told me exactly who she was and why she was coming by. I only retained Evalina and my home!! I honestly could not believe Evalina would have made her way to Iowa, of all places, from the Yukon without many days of discussion and telling every one of her plans!! I could recall nothing about her going any where!! So, I just decided to try to bring myself to being fully awake and waited!!

Soon, a very nice car, with an extremely well-dressed lady appeared in our drive way and she began the walk up the drive way. She was a very pleasant and friendly gal!!
Immediately, she began to explain why she was at my home and that she was just "representing" Evalina!! Now, I was thoroughly confused!! This gal, who introduced herself as Mary Kaster then handed me a lovely gift bag and proceeded to tell me it was for me from Evalina!! She also encouraged me to open it as soon as possible!! I reached in and I pulled out a nice big box of DeMet's Chocolate Caramel Turtles!! I so wanted to just taste one, but knew better with my stomach that day!! I then pulled out the most beautifully packaged "Satin Hands Pampering Set" from Mary Kay!! I have had cracked and rough hands for quite some time. This is a three set process that seems to just have to work!! I sure am going to begin trying immediately tomorrow morning as Mary was kind enough to explain exactly how you use this three step process. I truly feel this is just what I have been so badly needing for my hands!!

Above is a picture of the unopened bag Evalina had sent me all the way from the Yukon!!Above is the lovely gifts opened and arranged for display for every one to see!!
All I can say is I am sure going to invite Evalina in any "naughty corner" I find myself in!! It was very touch and go, if I actually was going to be able to post that I had completed the Lesson this morning. I had tried, but for some reason could not get the Lesson to Post!! I tried later today, while I was up and the Lesson printed just find to the Lesson Album!!
Hopefully, this was an omen that is telling me I will be able to get through this Hardanger Lesson and project with no more trials and tribulations!! However, if I do I sure know where those DeMet's Turtles are setting right now and every one has been notified they are Private Stock!! I may look for a mistake just to be able to take a chocolate break!!
After Evalina's friend left, I sat absolutely stunned!! I could never imagine any one doing any thing for any one so far away, much less to have some one do some thing so nice just for me so far away!!
Evalina, you are truly the best friend any one could have!! I am truly at a loss for words to know just how to say "THANK YOU" except to say THANK YOU VERY MUCH for this pure act of kindness and caring for me!! To care for some one you do not know all that well and have such a great amount of humor attached to it shows you care deeply about every one and every thing in this entire Group!!
I can come up with no other words, but THANK YOU VERY MUCH EVALINA ZAMANMA!! Your are truly one very great and caring lady with an incredible sense of humor!!
I love you very much Girlfriend!!
Love and Hugs!!