Monday, January 4, 2010

HAPPY NEW YEAR, January 04, 2010

Par to course, Better Late Than Never!!

Since my computer crash a few months ago, nothing has been the same on my computer, thus no pictures, few updates, and any thing else that could go wrong with my computer literacy!!

Out With The Old, And In With The New!!

I must have been a VERY good girl (most likely NOT), or a certain husband forgot his 30th Wedding Anniversary (give or take a few, depends on memory of who is counting-LOL!! Yes, I can laugh about it now!!)!!
Thus, I have got the best and biggest HP Computer which comes in a "Bundle" with speakers, 20" Flat Screen Monitor and whatever else it takes for the whole thing!!
And, Eunice has convinced me that I need and she will find some computer courses for me!! And, I agree whole heartedly!!

As for the heated debate over tile or carpet in our main bathroom, I do NOT agree!! Every one who knows the details well votes without any doubt that TILE is the only choice!! I was beginning to give a bit and had decided to actually go out and look at tile. However, during my end of December bout of bronchitis, walking pneumonia and a bit of flu instantly changed my mind as I shivered each time I needed the bathroom from the moment I entered it until at least ten minutes buried under a pile of blankets on our "wonder" (still wondering how in the world, I let Max convince me to all him to buy this $6,003.37 Therm-O-Pedic Adjustable Bed) bed that instantly heats up just from your own body heat and the super-duper (FLOP-did I actually call it as it is) mattress!! I know my limits well and I have had enough of our new deep-freeze bathroom since loosing it's carpet. Some where there is humor in this "incident", however, I am yet able to find it, so believe me simply do NOT ask!! No one has the stomach for this Max Moment!!


To start, I am able to say, "NO change in conditions"!! My Max and my Miprezious appear to be doing fairly well!!
For months, I have seen nothing, but continued deterioration in my Max. I long ago decided there was little else I could expect. I have conditioned my self to seeing ESRD on every thing concerning Max. For months, seeing ESRD, usually resulted in a world of tears accompanying every shower I took and many times I have had several showers in the same day. I have come to terms with End Stage Renal Disease!! It will no longer rule our lives!!

Max is by no means going to heal and get better. However, I am not going to have to intro my self each time I call the gods who run the Transplant Unit!! They are going to learn to know me by the very tone of my voice. I am going to begin my letter writting campaigns to every one including OPRAH again!! And, you can bet the farm, I am going to begin calling the "gods" and continue to ask "what number are we this week" and if things begin to look steadily not so good, as I have become all too familiar with the past few months, my calls will escalate to "what number are we today"!! We will never give up the one thing that the "gods" can not take from us and that is HOPE!! I am no longer terrified for my self when it comes to my own survival staying totally alone in a strange motel, in a strange city 90 miles from our home!! The last few months have been literal survival training and I have thus far overcome all the obstacles we keep having pop up and attempt to knock us over again!!

No, things are still not "heaven on earth" in our home, but they are also no longer a "living Hell on earth" on the flip side!! I had to tell Max he could no longer just quietly leave at 5:30 A.M. each Tuesday, Thursday and Saturday after getting me settled in my chair with every thing I could possibly need for the following four and one-half hours. I finally had to tell Max he was no longer allowed to drive him self to dialysis. Our regular quiet morning routine has turned into a frantic "if" the city taxi cab will show up at all, much less on time, to take Max in to his Dialysis Center!!
And, each dialysis day, Miprezious will begin to get anxious about 10:00 a.m. awaiting "Daddy" to be back home. She has just started insisting that I sit on the sofa with her, in front of the big picture window, so she can hang over the back of the sofa awaiting the first sound of the Municipal Transit special disability bus straining up our hill returning her "Daddy"!!

Max still needs most of my attentions!! However, I think he has begun to learn to at least "ask" before "acting" before he does much of any thing. I believe he has grown to realize and know he is confused and does not see things correctly and to depend on me to be there to sort every thing out for him, regardless if it takes three to four times over and over!! It has truly lessened my load by leaps and bounds as I do not feel like I have to watch him every moment of every day any longer!! Max is in pain that never lets up for him, however, he rarely complains about it at all. He is very fragile and is very prone to falls. There is very little I can do when he does fall, except to pick up the phone and see which neighbor is available. The neighbors are all still the very best and who can be nothing short of our guardian angels!! I would guess that they all would have their Caller ID units programmed to flash P.I.T.A. each time we telephone them, but yet they still "claim we are no bother" to all of them!!

It appears, probably more "wishful thinking" that Max has hit a plateau presently. He seems to be the same, although he is getting weaker each day. Max still feels, and God love him does better than he can do for him self, he HAS to take care of me!! He still has his rituals of getting me up and helping me get back into bed every night. I am beginning to be able to spend more time back in my "Stitching Sanctuary"!! Max comes to the doorway each night and will always say, "let me know when you are ready to go to bed". However, before I can get my self out in to the living room, he will be laid back in his recliner sleeping away as he does about all day and evening. He continues to get up in the night and wander, but I have learned to just let him get up as he will surely end up in the recliner fast asleep within minutes of his getting out of bed. I rely on Miprezious to bark if he dares to move a bit!!

We rarely go out whatsoever any more!! Our groceries are ordered on the computer and delivered the following morning, our laundry is dropped off and picked up at a full-service laundromat by a caregiver, my hair upkeep is done by one of the gals from my shop coming in to our home, our bills are all paid online and most all our purchases for any sort of needs are bought via the computer also. We pretty much only go out for medical related appointments!! Our big outing is usually church when we both are able to go. And, all is relatively going well with out the benefit of any relatives!!

Miprezious seems to be doing well. There are few, if any, laboratory tests that can be done for Mi. There is a blood test that is well over $200 that does tell us what her status is. However, after a REALLY bad initial first day for both of us, I got us together and we hired a canine nutritionalist. "Maggie" now prepares all of Mi's main meals. She also makes all her treats homemade. They mainly consist of dried apples, dried blueberries and homemade blueberry cookies!!
We thought there was not a chance in this world that Mi was going to even look at this new food, much less try it and surely would not eat it!! However, par to course, she fooled us once again!! Miprezious LOVES her new diet and the foods it allows. And, she loves her "Maggie" treats and "Maggie" dinners!! In fact, the first few days, we would place her food in her plate and she actually gobbled it down and then demanded seconds!! We will gladly pay for all the blood work the Vet wishes to pursue, but at this point, it truly matters little. And, can we really handle knowing each day that she is actually failing despite the fact we are doing absolutely every thing we possibly can do for her!!
Mi appears to be in no pain, whatsoever, and, more importantly she is an extremely happy little "furbaby" who becomes more dear to us both each day!! Mi had a wonderful Christmas and had more wrapped gifts around the wonderful "plum" Christmas tree than the very most spoiled child on this earth. Actually, she got so in to opening her gifts and trying to play with each as she progressed that we had to give her a "time out" in the midst of her festivities!!
I finally had to make her go in to the bathroom with her "Daddy" to simply make her catch her breath again and slow her heart beat down considerably. It did not take her very long to come charging back in to the living room with full steam ahead!! This time Max, and/or my self, helped her with each gift so she would not be quite so wild!! She sort of had us both worried Christmas Day as she was completely listless and did nothing, but sleep. Mi was simply trying to recoup her energies from Christmas Eve. Mi has become more of a lap little one in past month which was some thing she rarely would do. There is no complaining from me when she wants to be held as it is quite nice after a "trying" day!!

AND, NOW PRETEND TO HEAR A BIG DRUM ROLL................................
For my self!! I was one sick dog for several days!! On Sunday, December 20, I got quite ill in church. I got chills that would not stop!! Chills is just some thing that does not occur to me with my illness. The nerve system that controls my body temperatures is destroyed and does not work any longer. I have to be quite careful regarding getting too hot and too cold. In the eight years of my illness, I can remember no seiges of being too cold, much less ever having chills!! The following day was our 30th wedding anniversary!! We surely had no big plans, in fact, I was scheduled to have my knees and shoulder joints injected so they would have another attempt to work a bit better. I was too ill, but almost welcomed seeing my doctor. I was then diagnosed with the bronchitis, walking pneumonia and touch of flu!!
I was placed on two powerful antibiotics in hopes of being able to get well as I was needed far more here at home than being able to take the time to be hospitalized!! I progressed well in spite of the antibiotics making me even much worse sick than I was. After just a few days, I decided enough of them!! I was very sick prior to them, but I was REALLY sick with them!! I spent more time in the bed, although I could not have luxury of actually sleeping, for very little of the time, for fear of what woulld happen without my ever on duty watching eye!!

Christmas arrived. I was quite bummed that we were not able to attend candlelight midnight Mass or even Christmas morning Mass as the weather was quite snowy combined with a lot of ice!! However, we had a very nice Christmas holiday, even though it was probably one of the most quiet I have ever experienced in my life!! We had spent the Thanksgiving holiday with our parish priest, however, she detached a retina in her eye Thanksgiving night and had to have surgery just before Christmas holiday. It was the beginning of the nice, even and quiet days we have been having in this household.

During the Christmas/New Year time, I noticed my feet had went ice cold!! No matter what I did, which was little, as I can not tolerate any type of stocking and/or shoe on either foot. I simply could not get this overwhelming ice cold effect to leave either foot.

This past Saturday evening was great!! I had spent almost the entire evening in my stitching nest stitching and truly seemed to not have a care in this world!! The weather had turned even worse than it had been the previous several days. It was both snowy, with an ice covering and the temperatures were between minus ten to twenty below zero once again. Max and I had decided we would not even attempt going to Mass the next morning. We always have to consider that Max has to pretty much push my wheelchair up to the church entrance. We have been assigned a parking place as close to the entrance as there is, but it is still about a regular home's house and yard!! The church members have insisted we telephone when we leave our home about five blocks from the church. They are most willing to come out and assist me and let Max get him self inside, but he will not hear of this. I am pretty much trying to place a leg flat on the ground and give a push off with it to keep my wheelchair continuing to proceed ahead.
However, all things considered we just decided it was best to not even plan on going to church the next morning.
Thus, Max fell asleep in his chair as he does most evenings and actually stayed that way until about 2:00 a.m. I was more than content to just continue on with my stitching and I did with great pleasure!!

About 2:00 a.m., Mi decided that she wanted to be put to bed and she began barking very loudly in the hall that separated Max and I. Thus, we both were suddenly on alert and attention to her!! I decided to just stand up in front of my chair to get my bearings and to let Mi see that I was paying attention to her just to get her to stop barking!! I had a strange eerieness in both legs immediately. I actually looked, and looked again, as I felt I had spilled some thing or I had possibly wet my self!! We have a golden rule in our home and it is you go directly to "the Home" if you should wet your self that we regularly joke about between each other. I thought there was no way that this could have happened to me, but every thing was running rampant through my mind at this point in time!!

I continued to simply just stand there!! I finally sat my self back down in my stitching nest once again. I simply could not decide what was happening to my legs and feet!! Soon, I finally figured out absolutely nothing had happened, or was happening, to my legs and feet except the fact I was standing on carpet!! After almost eight years, I could feel the carpet under my feet!! Max came in to me and tried to steady me up a bit and I took actual STEPS!!
I actually took steps!! Max insisted I stop and not push my luck a bit further!! He insisted that we go to bed. I started to rub my feet and legs against the soft sheet under me and I could feel I was laying on an actual sheet!! Both of my feet felt like they were immersed and tied into bags of water!! It was an extremely strange feeling, BUT it WAS FEELING!! I have not had any feeling in my legs and feet during the past eight years, except excruciating pain. I did not have pain!! The rest of my body is still requiring the intense doses of morphine, however, my legs and feet continue to feel almost every thing and I want to just spring forward on them!! I know I have to take this "thing" very slow and very careful, but I am so elated over FEELING and real STEPS!! Everyone keeps warning me to be careful, take it slow, don't try to take too many steps, just try a few steps a day, etc., etc., etc.!! Eunice is still in utter disbelief. Max just continues to tell me not to keep my weight on my legs and feet all at once and says my legs and ankles are literally swelling up as he looks. This has already made my year!! There is no one or any thing that is going to stop me now!!

I have had my "balloon" broken many times previously!! I am all too well aware of this yet each day. But, I have so much hope, that nothing can happen that we can not handle and this is finally going to be OUR YEAR!!

Love and Hugs!!
Deborah and Max
Miprezious, too!!