Greg Update 3/18/10

I am doing an update today because I have something going on every day for the next two weeks and I know my computer time will be limited, so please bare with my as I get on my soapbox.

Greg has been home from the hospital now for a few weeks and the improvements have been very slow in coming, but they have been there. For example, when he was first back he could not walk without his (left) foot immediately wanting to fall to the right, and now when he's barefoot that does not happen anymore-however it still happens when he tries to walk with his shoes on. Slow improvements are still improvements. Usually he walks with his brace on otherwise he could not get around at all on his own. Please understand, he walks VERY slowly, and when he does it takes a LOT out of him. Yesterday, for example, I helped him get across our corridor (and back) without his leg-brace and with only the help of a 3 legged walker he holds on to with his good arm and after he was done he was absolutely exhausted.  He then has to skip a day to recuperate! That's how it is. The massager I got him for Xmas helps his (left) arm immensly, he tells me he gets the same soreness as he does after a workout, so we alternate arm/leg everyday.

I am very proud of the way Greg has changed his life to allow major improvements to his health. For example, since his (first) stroke he hasn't had a SINGLE beer! This is HUGE because I am only too aware of the negative effects alcohol plays on a person's life. Both my grandfathers died from Liver Failure-directly linked to their consumption of alcohol. I've never been much of a drinker, mostly because both my parents, never had alcohol in their house. My mom was absolutely traumatized by the drunken tirades of her dad when she was a child, and my dad almost died at his grandfather's funeral because he drank too much-he was 10 years old and everyone (to my horror when he retells the story) was offering him a drink. He was too young to know any better, got severely sick and almost died. 'Til this day, and he's going to be 80 years old this year, he almost goes into convulsions anytime he even smells alcohol. At any rate, my grandma had a glass of red wine every night for dinner and she died at (almost) 102 years old. I look forward to my glass of Lambrusco every night and I limit myself to one. On occasion I might have some Spumante, like for New Year's for example and that's that.

Another thing Greg has done that I am very proud of is change his schedule. For years, or at least since I've reconnected with him 11 years ago, since he worked 'til midnight, he would stay up 'til about 4am and wake up around noon. No more. He goes to sleep with Connor around 9pm and wakes up after I come home from taking Connor to school, just after 8am. He even tells me he will never go back to that schedule again, he loves his new schedule. Yey!

I am also proud of the way his spirits seem to be up most of the time. The other day he had a bad morning emotionally-it broke my heart. I can't imagine how things might be for him. Here's this extraordinarily healthy man, who exercised all his life, trapped in this body he can barely move. I know that for family members and friends who haven't seen him since his first stroke that's hard to comprehend. My aunt, whom I love dearly, asked me a little while back when I was coming to visit her. She lives on the other side of the country and knew about Greg, but somehow, I suppose, since she hasn't seen Greg, it did not register with her how he really is right now. It's *impossible* for me to travel right now, especially if that means taking the entire family along. Greg and Nicky are on wheelchairs and Connor is only six, so unless someone can grow me a new set of arms, I can't possibly push two wheelchairs at once. That was the main reason why I got Nicky a powerchair after Connor was born by the way-a decision I was crucified for many times over by EB doctors and other EB parents who shall remain nameless. How was I supposed to push Connor's stroller AND Nicky's wheelchair at the same time? Anytime I take Nicky anywhere I have to use the regular wheelchair because I can't afford to purchase a Van to transport Nicky's power-chair, and while his chair does break-down for transport, it breaks down in roughly 10-12 pieces and the bottom of the chair requires 4 hands (hence, 2 people) to push together. Connor and Greg at this moment can't help me with that, so Nicky's sole use of his power-chair lies solely to go to school and back, since the special need bus has a way to transport the chair to and from. Nicky walks around the house, however hard that might be for him at times with giant blisters or wounds under his feet. No matter how I pad them, sometimes I still have to use a computer chair with wheels at the bottom to take him around the house. Thank goodness for my tile floors!!!

At this point I seem to have everything under control. People that know me know how my glass is always half-full rather than half-empty, so I've managed to tackle this challenge head on. My bathrooms are clean, the laundry is kept up with and my house is somewhat in good shape considering. Non-important stuff can wait. I pick my battles. I have to cook dinner every night because I have to keep a close eye to Greg's sodium, and nutritional intake. We have a lot of fish, white meat and the rice/pasta/bread we have is almost completely non-white. The only restaurant nearby that I found where I feel confident in buying organic/nutritional meals is called 'Chipotle'. I will try it this weekend, looking forward not to cook for once! LOL! Gift Cards welcome! Hint Hint, ha ha :-)

The only thing right now that is a cause of serious stress (and I am trying very hard to stay positive and deal with it, believe me) is the high cost of all of it. This is not the first time in my life where I wished I was in Italy with my family. Not only for their help and emotional support, but because of their health care system. Those close to me know the *hell* insurance companies put me through since Nicky was born. I have *so many stories* that will make everyone's hair stand up straight!!! They will all end up in my book. Everything from waiting a year and a half for a throat dilatation because I kept getting the run around from the medical group and insurance company, from being denied bandages over and over again and waiting 2 months simply for a denial letter so I could get another organization to help me out and running completely out of bandages, to going into serious debt purchasing bandages... and the list goes on. 'Til this day, getting my medical group/insurance to cover anything at Stanford (where the closest EB clinic is) is hell on wheels. Nicky's hematologist requested hydrotherapy for him in early January and we're still waiting! We don't even have an appointment and I can't get anyone to call me back!
At any rate, I was speaking about the high cost.... mind you, Greg pays over $300 a month for our health insurance and on top of that we have these outrageous co-pays. It's $100 every time we enter the ER (that's why we opt for Urgent Care often enough, it's only $20), $20 every time we go to the primary doctor (every two weeks), $30 anytime we see a neurologist (three times the past month-and two more appointments this month), $30 for any rehab visit (yes, they see us for 10 minutes and they charge us $30!), $30 for any test (you do the math, the past month and including the one next week, Greg has had an MRI, 2 CATscans, plus 1 other scan I forgot the name), everyday Greg was in the hospital we were charged a $150 co-pay-this time around he was in the hospital for 4 days) and we're STILL trying to pay the hospital off from his LAST stroke!!! That time he was in the hospital for 5 days and we also had a $250 co-pay for the Rehab clinic! WHO CAN AFFORD TO BE SICK IN THIS COUNTRY???? My mother almost died in Italy for complications from an infection several years ago and she ended up being in the hospital for nearly 2 months! I will let you take a guess on how much her co-pay was. Guessed it yet? Yes, ZERO! Yes, you will say, in Italy taxes are much higher. True. But we do pay for the premium, right? That $300 a month? There is no premium there. It all comes out in the wash. When someone gets ill they don't have to worry about losing their job and the health insurance that goes with it. Do they have to wait? It depends. Is it life thretening? Then... no. Never. I waited several months for Nicky's throat dilatation, that's less than my dad had to wait for his non-life thretening eye surgery in Italy. Nobody in my family was EVER denied a surgery, they even paid for my sister's IVF!!! TWICE!!! Do they have doctors you can see right away if you want to pay out of pocket? YES! So, is it to anyone's real surprise I am for Health Care Reform? Heck, I want Single Payer. The for-profit system we have in this country is absolutely disgusting. People are dying while the Insurance Companies are making Record Profits! There should be no profits involved when people's lives are at stake. Period! How far can greed go? Seriously?

Anyhoo... I am OFF my soapbox. Next week should be interesting, Greg has another CATscan and we're interested to hear what they will find. He's telling me his cheek and his hand are still numb so he's worried about blood still loose in his brain. Somehow I doubt it, but you never know. He's been off blood thinners and he's taking new blood pressure medication, he's eating fabulously and I don't see him having any strange side effects. No more allucinations of any kind. As per how long until he, say, can walk without his brace and is independent again, that's probably a matter of several months. I don't expect him to be completely independent for at least a year or longer. He understands now that his progress is very slow and he's made that part of his consciousness. He gets it. Strokes suck, but he's alive, improving, and things could be much worse. He could have lost his ability to talk, see, etcetera.

I want to thank everyone for the kind words, and all of those kind souls that have bought my book! Every penny that I make from the sale of Special Mommy Chronicles gets directly deposited in the account that I use to pay Nicky and Greg's Medical Bills, so any little bit helps!!!

As per my new book I am writing-that will probably not be out until Nicky goes through his Bone Marrow Transplant. Yes, we do still plan to go, I am not sure when that will be, it will all depend on Greg's independence. Not only he will need to be able to take care of himself, but also, he will need to be able to take care of Connor since I won't be able to take him with me when we go. For several weeks (if not months) I will basically be trapped in a hospital room with Nicky, making sure everything goes smoothly, and even after we get discharged, we'll need to stay in the area for several weeks. It will be a huge undertaking but one I am hoping will mean the end of suffering, or, at the very least, the beginning of the end of the suffering Nicky has endured the past 13 years-probably close to 15 by then.

Okay, so I wrote a BOOK here, rather than a BLOG, my apologies. When I get going I can't stop. It's like my hand takes over and can't stop. Thank You again for all your support, I don't know what I would do without all of you!

{{{HUGS}}}
Silvia & Co