Monday, March 29, 2010

Photo of the Day...

I came across this photo while researching the work of Lewis Hine (Men at Work) for my mid-term today for my History of Photography class that pretty much sums up my fear of heights. Just looking at this picture gives me the eebejeebes...YIKES!

Still, no matter how my fear of heights make me feel about this photograph, is equally impressive for many other reasons. This is just one of the 3400 brave workers who apparently didn't suffer from "acrophobia" that built the Empire State Building in New York in the 1930s. Even in these dangerous working conditions (to say the least) only five workers died during the construction.

I find it kind of bizarre how my fear of heights has gotten worse as I've gotten older. The weird thing is that I am not at all afraid of flying in airplanes, I am cool going on roller coasters, no matter how high, and I would be fine standing on the top of the Empire State Building for example, probably because of the high rail, but put me on any bridge (the Glen Canyon bridge over the Grand Canyon actually gave me a panic attack), on a cliff or the edge of anything without something to grab on or a feeble rail and I truly feel like my heart pulsating outside of my body. I am still trying to figure it out. Is it a defense mechanism? Did I fall and die in a previous life? LOL. Who knows...

Thursday, March 18, 2010

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!

Silvia & Co

Tuesday, March 09, 2010

Greg/Family update March 9th, 2010

This BLOG will be long and winded, but I am a writer at heart so please bear with me. I promise it won't be boring! As I sit here this morning, it's not even 7am yet, but I know it will be much later by the time I press 'publish'. So much to say, so many thoughts to gather.

Greg came home from the hospital last Tuesday and we had his first (of many) appointments with the Neurologist on the following Thursday. We had a lot of questions for him, we wanted to know if this could happen again, how did it happen in the first place, what kind of meds or foods he should avoid, if he should keep worrying about having seizures and the list goes on and on.
The stroke, as he explained, happened in the same exact area as before, deep in the Right Temporal Lobe. It's an area of the brain where they cannot get real good scans because it's so deep, but since the area was weak from the initial stroke, the combination of too much cumadin (a blood thinner he was taking) and a weak vein, who was not very flexible and elastic because he has 'Arteriosclerosis', was a disastrous combination. The vein burst, cumadin at fault. The Neurologist put him on cumadin after his first stroke because, in fact, while MRIs, CAT scans and other tests he took did not see ANY clots ANYWHERE, apparently he must have had one in the Right Temporal Lobe for this to happen in the first place, where the doctors noticed unusually (genetically) THIN veins, and wanted him to possibly avoid another one. He is, of course, off cumadin now and forever and might only need baby aspirin from now on, but not for a while. The seizure medication he was on was only temporary, while he had the large hemorrage in his brain.

What I found strange is how none of the Doctors in the Hospital were at all concerned with allucinations that Greg had while in the Hospital. He had a sleepwalk incident (and he can't even walk without help, so that was something else), a couple of disorientation episodes and one where he heard Skylar's voice everywhere. I did research it and "auditory" allucination are not unheard of in people that have strokes in that area of the brain, but I could not find anything conclusive about the disorientation and the sleepwalking. Fortunately he hasn't had a single episode now since last Wednesday night, but I for sure will bring it up to the next Neurologist appointment, one that I will make today with the experts in Loma Linda. He will have another CATscan before the end of the month, followed by another Neurologist appointment to discuss the findings. They want to make sure the blood he lost in his brain is completely reabsorbed. When he was released the last CATscan was good, so we're hoping to get even more good news.

The bad news, of course, is that he lost much of the progress he had made in the past 3 months. He can't walk by himself without his leg brace, and his arm is back the way it was shortly after his initial stroke. He still can't dress himself, nor take a shower unassisted, if we go anywhere we need the wheelchair, even mundane tasks such as getting anything our of our fridge in the garage is out of the question. Opening things, At night he has to use the urinal, and he needs tons and tons and tons of rest.

We do have an appointment with the General Practitioner tomorrow to discuss the future and do some blood tests. Presently Greg is taking better blood pressure medication, which has improved his numbers substantially (Thank You Mary for sending that new machine to us, we LOVE IT!). If he keeps his BP down like this, without the blood thinners and his cholesterol stays low, it's unlikely he'll have another stroke. He's started exercising LIGHTLY and will keep it light from now on.

This, of course, leaves me to pick up the pieces. I chuckle when I read that famous 'God doesn't give us more than we can handle" from well-meaning friends and family. Why do I chuckle? Because, well, God must think I can be two places at once and have 4 arms or something. So many times, during the day, Greg either calls me because he needs me while I am in the middle of changing Nicky's bandages, or Nicky calls me because something happened while I am helping Greg, or then Connor needs something while I do something else. I worry because I have to leave Greg alone all day while taking Nicky to CHLA, and worry about Nicky when I have to leave him alone for several hours when I take Greg to the various Drs. It's ridiculous. Last night I was on the toilet (yes, I know, TMI!!) and all THREE called me for something! WTF???? I go to sleep absolutely exhausted, with my to-do list getting bigger by the day. I feel like I've aged 10 years in the past 5 months.

Last semester, when Greg had his initial stroke, I was only taking 2 college classes and I was able to take an (unpaid) leave of abscence from work. This time around, not only I work and can't afford to take a leave of absence (I only work 10-15 hours a week, but it still takes away 2-3 mornings away from me, and I am using the money to pay off the bills so I will be able to take a 5-month leave of absence when I take Nicky to have his Bone Marrow Transplant when Greg becomes independent again-more on that later), but this time around I am taking 3 college classes, one of which has a TON of homework. Of course I am also the sole person in this house that buys and prepares the food for 4 people (yes, Nicky does not really eat, but I still have to get his tube-feedings ready), the sole person that does laundry for 4 people, the sole person responsible for cleaning after 4 people, paying bills, getting everyone bathed, dressed, take the the kids to school, make sure they do their homework, take everyone to the Hospital when they need to and run the million errands I always have to do, going to the bank, the pharmacy, buying birthday cards, organizing birthday parties, making sure the holidays are fun for the kids and the list goes on... and on... and on. Nicky of course is a challenge in itself. He needs iron transfusions once or twice a month, bandage changes daily, and even at 13, he's far from being independent. Without a cure, he might never be. All I have to say is... God has some explaining to do. If at "least" I had some family members nearby that could come on occasion and help out, even if it was just to bring dinner once a week, would help tremendously, but we have no-one, not a single soul nearby. My family is in Italy, Greg's sister is in Florida and everyone else is scattered around the world, unwilling or unable to come.  It really hurts to see family members going to help other family members watch their (healthy) kids so they can go on "vacation" or just away for work, or simply to give them a break, yet they are leaving me in the dust. Gee, thanks. We are alone. That, my friends, is perfectly clear. Duly noted. Kind words are great, and they help a lot, so I am thankful for those wonderful souls who have taken the time to write me a note to lift my spirits the past few months. *THANK YOU*.

It was suggested to me that I ought to go to a local church and ask for help. That is nice, but I am extremely uncomfortable going to a church I never go to, begging for strangers to help me. That, I am sad to explain, would not be of any help to me, it would simply be yet ANOTHER source of stress. I mean.. how LOW can I sink? Having a STRANGER in my house cleaning my bathroom? No, thanks. At this point the status of my house, my laundry, is the least of my concerns. As long as they don't get too out of control, I'll get to it eventually. I have my to-do list and I'll stick to that. Slowly things will improve and we'll go from there. I will survive this, my only fear is I'll feel as I felt the other day, I truly felt I was on the edge of a nervous breakdown. If that happens, my family is TOAST. *SIGH*
While we were already planning a possible move to Italy when Greg retires and Connor graduates High School (in roughly a dozen years or so), now this has put a 'definite' on it. Greg loved Italy and suggested the move when we were in Italy 3 years ago. We have so many amazing friends and family members scattered around the world, but nobody is HERE. When Christmas and Thanksgiving roll around, we're always alone. The one city in the entire planet where we would not be alone is my hometown in Italy. My parents, my sisters, my nieces and nephew are there and much more extended family, such as my aunts and cousins. We'll never be alone again. Nicky is excited, he loves my family, and Connor, well, how exciting will it be for him to go to a University in Europe? What a lucky guy! Growing old with my sisters... yes, if there is something all of this has taught me is how much my family really means to me.

This of course brings me to Nicky. I've been following closely the progress of several children with RDEB going through a Bone Marrow Transplant at the University of Minnesota. While the results have been mixed, it seems as if for the most part, the rewards are worthed. It may not be a 100% cure, but it might eventually be that as the cells replicate with time. There are several children going through the tranplant now that are roughly the same age and form of EB as Nicky so we're keeping a close eye on it. I already contacted Minnesota, and we're on the list to go-we have no time to waste. BMTs work best on younger children, the older Nicky gets, the harder it will be for him. And, IF, God forbid, he develops any problems with his internal organs, or gets any form of skin cancer before we go, he's immediately "out". The problem is that now we're at a standstill and  can't go until Greg is independent enough not only to care for himself, but to care for Connor as well, since I won't be able to take Connor with me (and to say I will miss him terribly is *THE* understatement of the year). My Fear at this point is that while we wait for Greg to improve, we wait too long for Nicky, and right at the time when it's finally the time to cure him, we might miss out on his cure, which might spell a death sentence for him. That's the harsh reality. I am trying to think that maybe we're meant to wait so they can perfect the transplants and make them less risky, but time is not his friend. So many of Nicky's EB friends have been taken away from us already, new ones fly to the angels all the time. Nicky might actually have a chance, but will this block on MY road spell disaster for him? That's what keeps me awake at night.

***I have one FAVOR to ask!! Greg always asks me if SO-and-SO read the Blog with the updates... but unless there is a comment or a 'like' (for those on Facebook), there is no way for me to know. So, please, this time ONLY, if you READ this, take the nanosecond it takes to click on *LIKE* (on Facebook) or if you read this on my original blog, do leave a comment underneath, even if just to say one or two word {such as Love, Hugs or whatever}. I would really appreciate it!!

{{HUGS}} and Love-Thank you once again for the kind words. You make my day.


Tuesday, March 02, 2010

Greg Update 3/2/10

Greg will most likely come home from the hospital today, I still have to have confirmation, but the Doctor told Greg last night that the latest CATscan showed that the blood is clearing up and that all the blood tests keep coming back normal. On Sunday we spoke with the cardiologist and the NeuroSurgeon and they revealed a lot of things to us that truly worried us right then and there-and made us quite angry.

First off, apparently this stroke was pretty much caused by the blood thinners. Every time his blood was taken at the lab near the Dr office or by the traveling Nurse, his #s were okay, but anytime the blood was taken anywhere else, such as the few times we went to the Urgent care since his original stroke, the blood was way too thin and they told Greg to stop taking the blood thinners for a few days, so we know there is something fishy going on there, and to fix this his Dr wants his blood taken at the Urgent Care from now on. Greg will be off blood thinners for at least 3 to 6 months (it varies depending on which Dr we talk to) and even when he goes back on them, we're going to have to be convinced he even needs the stuff, seriously!

We feel like we have been LET DOWN by the Medical Community all around. This angers me to NO END because I've felt let down by the Medical Community, time and time again as far as Nicky is concerned (writing my book now, the stories I will tell will make your skin crawl, promise!). In Greg's case, not only Doctor after Doctor IGNORED Greg's TIAs before his original stroke, but nobody told us, ever, in the past several months since his stroke that he had what they now claim he has had all along: ARTERIOSCLEROSIS. Arteriosclerosis is the hardening and the loss of elasticity of his veins and arteries. This is mostly genetic, but can be caused by undetected high blood pressure. The part of his brain that suffered from his original stroke has weak, thin veins, which were very fragile, and blood being too thin was a recipe for disaster. UGH!!!

Moving forward, the two things we'll need to concentrate heavily on for him is his diet and blood pressure. The Dr recommended walking for 30 minutes daily and keeping his exercises fairly mild for quite sometime. I am going to be looking for a GOOD blood pressure machine, any of my family/friend nurses, if you know of a GOOD, ACCURATE one that is not too pricey, please comment below and let me know which one you might reccommend. I would truly appreciate it. Especially if Target sells it, LOL. I get a discount there.

We'll need to keep his distolic (sp?) pressure in the 75 range, which may creep up to 80  in the evening, but never more than that. I have a good handle on the food part. I now shop mostly at Whole Foods (or SuperTarget-they have a good Organic selection) which is a big advantage, and he'll need to completely cut out red meat, sugar, no saturated or trans fat foods, and continue his low-sodium diet. I have a list of fruits and vegetables that help keep his BP down, so that's not going to be a problem.

The issue I am personally concerned with because I cannot control is STRESS. Greg, as everyone that knows him knows, is a Type A personality. I already told him CNN is out and he needs to take it easy, so if you talk or text him, PLEASE keep him Stress free, at least for now. That vein that burst in his brain will take MONTHS to heal and is important to make sure he rests and his stress levels stay low. I can take care of the rest. He already had some incidents of allucinations (possibly caused by the drugs administered to him in the hospital), so rest is of outmost importance now. I am thrilled he'll be able to stay home for at least 6 weeks, possibly more.

As soon as he feels a little stronger we'll start rehab again. He's lost most of the progress he had made on his arm and a good part on his leg as well, so he has a lot of work ahead of him. Unfortunately the improvements are slow, which are frustrating. He told me he's not giving up, but he does feel discouraged, especially when the Neurosurgeon told him this 'could' happen "again". We'll do everything in our power to make sure that does not happen.

Thank you everyone for the kind words and thoughts of encouragement, they mean a lot to us!!