I spent last night down the lake watching my kids frolic and play. Last night I fell asleep with them all next to me in my bed. Memories of over a year ago flood back into my head. ...even down to the baby bunnies outside. I leave tomorrow. For two weeks. Some things are different, for better and worse. 1., My kids are older (better), 2. The bunnies at least have a mom and aren't dependent on me too(better), 3. I know I'm leaving (worse). The list goes on... I've waited over a year. I knew this was coming. I've been looking forward to it. I DO NOT WANT TO GO. (If you feel lost reading this, you will have to go back to the beginning and read my initial blogs of leading up to my diagnosis).
I check into ECAD tomorrow evening. I have signed a booklet full of legal and confidentiality forms. I will find out more about what I am and am not allowed to FB, Blog, Text, etc.. upon orientation. However, they were pretty strict in saying "what happens there stays there". It has to do with confidentiality of the others in my Team Training class too. So, I will keep everyone up to speed as much as I am possibly allowed. I am off to spend 15 days in a dorm style setting (with a room mate) and 10 people in the dorm. We will share one kitchen and one bathroom. We have strict rules regarding the facility we are staying at and are allowed very minimal visits, as that is OUR time to bond with our dog. We will live at the facility and report in for class every day from 8am to 4pm. On the second week, all our days are spent traveling and working in public...I've already probably said to much. Anyway
I know I have a ton of support, I have a ton of people that love me and care about me and help me and.... but I AM in this alone. Everyone, when it comes down to it, fights their battles alone. Although, I have had someone with me most of the time since this disease hit, I now go off ALONE for this chapter. There will be no family or friends or nurses to help me and look after me. I will not know anyone. I will not know my surroundings. I do not know how this will change me. Will it make me a different person? Will it change my view on the world? On my life? Husband? Children? I know my life will change, but to what degree, how much of an impact this will have.. I have no idea.
I graduate on August 6th. I suppose we will all find out then.
Monday, July 21, 2014
Thursday, July 10, 2014
I dont even know
By the title even, you can tell Im off. Im in a swirl of emotion and thought. Ive got approximately 2 weeks to go before I leave for Team Training, at ECAD, to get paired with my service dog. I've raised the money. I've been waiting a year. I DO NOT want to leave my kids or spend 2 months of this precious summer weather away. The first six months with the new dog will be crucial. Its time for it to learn me and bond with me. My youngest has her heart surgery scheduled for January. I, obviously, cannot take my dog to the hospital for the week I am there and its within that 6 months still. I spoke to one of the ECAD people in the whelping facility. She strongly advised me NOT to change the Team Training date. Not only for the sake that I might be put on the waiting list for another year or more, but...She knows the Lead Trainer well and if she has scheduled me for this particular class, she has a particular dog in mind for me. That just sent chills down my spine. There was a puppy born 2 years ago that has been being trained daily, specifically with me in mind.
ECAD called me a few days ago to confirm my arrival time and needs and to ask some questions. She asked what exactly I see when I get to a step, or curb, etc.. So, I let her know that I have no depth perception due to my loss of sight in one eye. So, a crack, bump, step, line, curb...they all look flat to me. She let me know that they have trained the dog to nudge me when a curb or step is coming, then it will place its paw over my foot and guide me up. HOLY CRAP!!! Also, the dog will guide me around anything on the floor that I might not see (toys, shoes, etc..). It is just so incredible.
I received my welcome packet a few weeks back. They stressed how mentally and physically exhausting the training is. They provided me with 5 pages of commands to memorize before I arrive. It is a lot of work. However, Im in the home stretch. Just fun stuff now: meeting my dog, buying its new gear, enjoying all the freedoms and comfort that come with my new "helper"...So I thought. I have been reading more and more on ECAD's website about how difficult it is for clients to get funding for their second dog. Today I got a letter. It tells about a woman whos dog got cancer. She raised the money to treat it, but the treatments did not work. So, she had to raise the $8500 again for ECAD and wait another year. When I have not even experienced the joy of the dog yet, I am thinking beyond that. This animal will be able to help me with just about every task I have to do, it will KNOW me better than anyone else ever will. As I / If I acquire more deficits, it will be trained to help me with those as well. But as I age, so does it... There will come a day that it can no longer help me. In ECADs letter, they suggested every client set a goal of raising $2000 a year and keeping it aside for when the time for a new dog approaches. So, the battle isn't over. It was my hope to have a fundraiser annually to help someone else each time around. Little did I know it would be me. So, as I go through this process, please keep me in mind. I still have donation links on my website: www.mybeautifullifewithms.com . I will also be planning a fundraiser and do plan on holding clinics/demos on how to work with people who have disabilities/service dogs. I will gear these towards schools, communities, health care staff, first responders, etc... I will do those on donation basis and put all funds towards the sad day when I need a new companion.
So, anyway...TWO WEEKS to Team Training. I have so much to do. Next week I have my 6 month MRI. I cannot even believe it has been that long (after having over a dozen in a year). I also have an appointment with my Neurologist and my General Practitioner. Ive been getting splitting headaches and we are trying to work out what could possibly be going on now. My doctor put me on anti-seizure meds. I took them once and cant remember half the night. So, back to the drawing board. Of course Team Training is right in the middle of my Tysabri infusion window (has to be every 4 weeks) and even a few days before treatment I go rapidly down hill. So, Ive had to start adjusting appointments 3 months ago. On the home front.. I know all my veggies Ive been slaving over in our new green house will be ready
, my beautiful flowers are blooming everywhere
, the pool is at the perfect temp.
Its such a NOT convenient time to go. Oh, and we have a surprise(!!!) litter of new baby rabbits.
Im going to be a mental disaster there.
As I go to sleep every night, an arm around each child..I wonder how Im possibly going to do it, be away. I had to leave them a lot last summer. I hated every second, but I had no choice. This feels like a choice. Its terrible and exciting and stressful and I guess it will all make me a better, more capable person, which in the end is the goal...I think.
I received my welcome packet a few weeks back. They stressed how mentally and physically exhausting the training is. They provided me with 5 pages of commands to memorize before I arrive. It is a lot of work. However, Im in the home stretch. Just fun stuff now: meeting my dog, buying its new gear, enjoying all the freedoms and comfort that come with my new "helper"...So I thought. I have been reading more and more on ECAD's website about how difficult it is for clients to get funding for their second dog. Today I got a letter. It tells about a woman whos dog got cancer. She raised the money to treat it, but the treatments did not work. So, she had to raise the $8500 again for ECAD and wait another year. When I have not even experienced the joy of the dog yet, I am thinking beyond that. This animal will be able to help me with just about every task I have to do, it will KNOW me better than anyone else ever will. As I / If I acquire more deficits, it will be trained to help me with those as well. But as I age, so does it... There will come a day that it can no longer help me. In ECADs letter, they suggested every client set a goal of raising $2000 a year and keeping it aside for when the time for a new dog approaches. So, the battle isn't over. It was my hope to have a fundraiser annually to help someone else each time around. Little did I know it would be me. So, as I go through this process, please keep me in mind. I still have donation links on my website: www.mybeautifullifewithms.com . I will also be planning a fundraiser and do plan on holding clinics/demos on how to work with people who have disabilities/service dogs. I will gear these towards schools, communities, health care staff, first responders, etc... I will do those on donation basis and put all funds towards the sad day when I need a new companion.
So, anyway...TWO WEEKS to Team Training. I have so much to do. Next week I have my 6 month MRI. I cannot even believe it has been that long (after having over a dozen in a year). I also have an appointment with my Neurologist and my General Practitioner. Ive been getting splitting headaches and we are trying to work out what could possibly be going on now. My doctor put me on anti-seizure meds. I took them once and cant remember half the night. So, back to the drawing board. Of course Team Training is right in the middle of my Tysabri infusion window (has to be every 4 weeks) and even a few days before treatment I go rapidly down hill. So, Ive had to start adjusting appointments 3 months ago. On the home front.. I know all my veggies Ive been slaving over in our new green house will be ready
As I go to sleep every night, an arm around each child..I wonder how Im possibly going to do it, be away. I had to leave them a lot last summer. I hated every second, but I had no choice. This feels like a choice. Its terrible and exciting and stressful and I guess it will all make me a better, more capable person, which in the end is the goal...I think.
Wednesday, June 25, 2014
Chipmunk
So I sit down for breakfast with the kids... because although I always want to sleep in badly, I drag my body downstairs with the first one awake and wait for the pitter patter of the others. Im sitting at the breakfast table with my 3 1/2yr old son, expecting the usual conversation of cereal bowl color and episodes of "jake and the neverland pirates"! Etc...and he says "mom, when you get your dog im going to run out to the backyard and..." I interupt "im going to race you out to my dog and im going to beat the pants off you". He arches back in his seat, has the smile of a chipmunk with its cheeks full of acorns, he snorts like a pig and starts laughing carefree and crazy. In between giggles and snorts he says " no mom im gonna beat your pants off". Its one of those times I want to cry my eyes out but im too busy laughing.
Do you jog or run with your kids? I cant. Play tag in the backyard? I cant. Race them to the bus stop maybe? I cant. I dont have the balance to run. Do you know how restricting that is when you have 3 young kids? I have not run since May 15 of 2013. I remember the day. It was perfect (if only I knew HOW perfect). I chased them all over the lawn of the newport mansions. we played like kids, as every parent and kid should do once in a while. I know its been years and years for some people, but i LOOK fine. I should be fully capable. Theres absolutely no reason why I shouldnt be able to do this simple thing. Anyway, I will soon be able to do that again...with the help of a dog. I got an email from East Coast Assistance Dogs the other day. Theres less than 30 days until my Team Training. I will graduate on August 6 and (hopefully) come home with my assistance dog. Life will become "normal" again.
Although im getting used to my "new normal" , I dont think my family is yet. I think...think... most of the time im capable and confident and sane. However, sometimes I just cant get out of bed. Ya know when you just feel like you cant get out of bed? Thats me, except I CANT. I looked at the calendar last week and said to my mom "didnt we have plans last Tuesday? What happened to that"? She replied that it was "my day off" (the day i couldnt make it farther than the couch). There are other days that I scream and yell because no one does their share and I cant do everything for everyone and nothing I do is good enough and.. and.. and... We still have some adjusting to do.
So speaking of adjusting, my doctor put me on a new anti seizure medication to try and control my headaches. He believes its my nerves mis-firing and this medication will prevent that. So I take it.. the beginner, baby dose. Ugh.. (my advice, never plan to go out when taking a new medication for the first time). Long story a bit shorter.. I remember only parts of the evening and the parts I remember were begging my husband not to call the ambulance, dry heaving for what seamed like hours and everywhere I went spinning. I snapped back into reality early morning and.. panicking.. asked al where my car was and if the kids ate dinner and if they were in their beds and such. I didnt have anyone in the car and would never have insisted on driving but I was so sick and dizzy I could not even function. Big lesson learned. So, needless to say, im looking for some alternatives.
That about sums it up for now. Not much new info, but keeping everyone up to date. I plan to walk you all though dog training (as best as im legally allowed). So, stay tuned.
Saturday, April 19, 2014
Time, questions and civility..
Today is April 19. I sit on the back deck in the evening sunshine enjoying a drink with my dad. We converse lightly about the late winter this year and local happenings. However, I am plagued, mentally, with thoughts. I haven't been able to concentrate, or sleep, in days.
I got the official diagnosis of MS on April 18 2013. I was in a hospital room in Newport, RI. Somewhere unfamiliar, away from my little ones for the first time in their lives, completely alone, unable to walk or even really move. On one hand, time has flown (like it always has). I cannot get over that it has been a year. This time last year ( A few days prior) I was sitting in the exact same place, looking forward to our apple trees blossoming. I LOVE apple blossoms. I think they are one of the most beautiful looking and smelling sights I've ever seen. I had a 1 yr old and a 2 yr old. I was fit and healthy(So I thought). I was full of life and energy.
On the other hand. What a LONG year. I still, sometimes, have to choke back the thought "WHY ME"? and "WHY SO EXTREME"? But..I know those thoughts aren't healthy and I know that we aren't given more than we can handle. So, apparently I have set the bar high with what I can handle. I often, lately, as I approached my year mark wondered why my lingering symptoms haven't gone away like most people that have MS has. I asked my optometrist if I could back down on appointments because, to much of his hope and dismay as well, my vision is not improving. I have decreased my Yale visits and my MRIs to every 6 months. Which is huge compared to over a dozen in the past year. Now.. I just have to grow accustomed to what I have and what I can do.
I am a Do-It-Your Self er at heart and have not let this disease take that away. I just got done renovating my bathroom, down to using the water cooled tile saw. I proved to myself that I can still do it. However, its definitely not like it used t be. The saying "measure twice, cut once" for me, is more like "Measure twice, cut once, measure again, cut again, get a new piece and try again". It involves hammering fingers and bending nails and even sometimes drilling fingers. But it gets done. By me. And it feels great when its all said and done.
This time of year also brings back other memories. I blame my Grand Dad for starting a long line of fliers. He was Navy Air. My Uncle, Restorer of sea planes in Washington State. My Dad, Air Force. My sister and I grew up under the wings of my dad's Cessna. They were some of my fondest memories of childhood. My Grand Dad was a Crew Chief and Tail Gunner in a PV-1. He missed actual WAR by two weeks. The Atomic bomb "saved" him. He also missed his first Grand child by two weeks. He passed away at the end of March in 2003. I usually go on a commemorative flight on March 30th every year. I missed the past two years.
My husband also has always been a flying enthusiast but I was the one that introduced him to the love of small aircraft by taking him up on one of my March flights. We have gone to many aircraft related destinations since then... Military Air Shows, Thunderbirds, Blue Angels, Red Bull Air Races, Etc.. I decided to make my dream a reality recently and take my flight physical in order to get my private pilot licence. Its just another thing to conquer, since I cant conquer "THIS". I got my eye DR to write a letter of recommendation. I was confident that this would be easy. Then, the flight examiner began asking too many questions and then asked for a letter from my MS Specialist. As part of the physical I had to list each and every time I have been to a Doctor or hospital in the past 5 years. LOL. That is where I stopped. Maybe in another 5 years I will try again. One other thing I cannot conquer. :(
So, for now I will stick to the car passed down from my Grand Dad. We love to take it out for cruises and to visit nearby airports. Whenever I drive it up to an airport I think of my Grand Dad doing the same, years back. I am sending it in for a paint job next week and after that am having it detailed with a PV-1 on the side. I cannot wait!
Other than that... I just got through reading a book on Civility. Amazing really. I love self-help kind of books because they really open your eyes to a lot of things you swore you already knew. I loved the book. I loved what I learned. There are pros and cons though. I believe I have become a much more patient, politically correct, understanding, civil, polite person from the knowledge I have gained. Unfortunately, I also learned how uncivil and unknowingly impolite other people are. So, do I share my new found knowledge to make them better people or secretly test my skills by reacting to them civilly despite their ill ways? Something the book does not advise upon...
I got the official diagnosis of MS on April 18 2013. I was in a hospital room in Newport, RI. Somewhere unfamiliar, away from my little ones for the first time in their lives, completely alone, unable to walk or even really move. On one hand, time has flown (like it always has). I cannot get over that it has been a year. This time last year ( A few days prior) I was sitting in the exact same place, looking forward to our apple trees blossoming. I LOVE apple blossoms. I think they are one of the most beautiful looking and smelling sights I've ever seen. I had a 1 yr old and a 2 yr old. I was fit and healthy(So I thought). I was full of life and energy.
On the other hand. What a LONG year. I still, sometimes, have to choke back the thought "WHY ME"? and "WHY SO EXTREME"? But..I know those thoughts aren't healthy and I know that we aren't given more than we can handle. So, apparently I have set the bar high with what I can handle. I often, lately, as I approached my year mark wondered why my lingering symptoms haven't gone away like most people that have MS has. I asked my optometrist if I could back down on appointments because, to much of his hope and dismay as well, my vision is not improving. I have decreased my Yale visits and my MRIs to every 6 months. Which is huge compared to over a dozen in the past year. Now.. I just have to grow accustomed to what I have and what I can do.
I am a Do-It-Your Self er at heart and have not let this disease take that away. I just got done renovating my bathroom, down to using the water cooled tile saw. I proved to myself that I can still do it. However, its definitely not like it used t be. The saying "measure twice, cut once" for me, is more like "Measure twice, cut once, measure again, cut again, get a new piece and try again". It involves hammering fingers and bending nails and even sometimes drilling fingers. But it gets done. By me. And it feels great when its all said and done.
My husband also has always been a flying enthusiast but I was the one that introduced him to the love of small aircraft by taking him up on one of my March flights. We have gone to many aircraft related destinations since then... Military Air Shows, Thunderbirds, Blue Angels, Red Bull Air Races, Etc.. I decided to make my dream a reality recently and take my flight physical in order to get my private pilot licence. Its just another thing to conquer, since I cant conquer "THIS". I got my eye DR to write a letter of recommendation. I was confident that this would be easy. Then, the flight examiner began asking too many questions and then asked for a letter from my MS Specialist. As part of the physical I had to list each and every time I have been to a Doctor or hospital in the past 5 years. LOL. That is where I stopped. Maybe in another 5 years I will try again. One other thing I cannot conquer. :(
So, for now I will stick to the car passed down from my Grand Dad. We love to take it out for cruises and to visit nearby airports. Whenever I drive it up to an airport I think of my Grand Dad doing the same, years back. I am sending it in for a paint job next week and after that am having it detailed with a PV-1 on the side. I cannot wait!
Wednesday, March 26, 2014
Beginning of The Process
I got the call! I am tentatively slated for Team Training with The East Coast Assistance Dog Foundation for the end of July. This means I will have to go live at their facility in Dobbs Ferry, NY for two weeks. Each candidate in the Team Training class will be training with the dogs from 8am to 5pm every day, except Sundays. Four or Five days into training, "my" dog will be assigned to me. The dog actually chooses the candidate. So, I do not get a choice in which dog I get teamed up with. Personality, temperament, height, talent, etc.. are all taken into consideration. Since my dog will be used for balance, the taller ones are actually easier for me. Also, mine will have to have strong focus and be very child friendly. It will have to be able to concentrate on work through the chaos of our busy house and kids. Something they have never done before is train a dog to stop at every doorway, top of stairs and change of terrain. I have very poor depth perception. So, its important the dog notify me when there is a step or something coming. It will also be able to pull the kids in their wagon. I use the wagon a lot and they want me to be able to have a hand free, rather than one on the dog and one on the wagon. I will also be able to latch the kids onto the dog in busy places so that they don't run off. Its going to take quite a dog!!!
Im sure there are many people in my every day life that are wondering why I need a dog because I look fine. Its days like the last few that I could really use one. I haven't left the house in 3 days. Yesterday I didn't get up until 4pm. I watched the kids from bed and the couch because my body was just completely uncooperative. Especially the few days prior to my infusion.
Last week, I was feeling great. I went into a store I have not been in before, looked around, and as I was coming out didn't see the step down and tumbled out onto the curb. Things like that...it would be nice to have the dog there to spot me.
On a different note... I had such a great time putting together my fundraiser (Cruise for a Cause/Whine for a Cure) last year that I wanted to make it an annual event. I wanted to raise money each year for someone else to be able to get the aide of an assistance dog. I had a thought the other day that maybe I could donate the money to someone locally in need... If anyone has any ideas...
I was stuck sitting in my parents bathroom for an hour while the kids were playing "truck wash" so I picked up and read the Readers Digest. There was an article about a Marine who threw himself over a grenade to protect his fellow soldiers. He ended up surviving, but having to have over 30 surgeries and still isn't back to his old self he said "Im at my new 100%". What positivity and optimism. Each day I strive to be my 100% and each day it might be a different 100%. Yesterday, I didn't get out of bed but twice. I watched my kids watch TV and play on the floor. I read them books and made sure they were fed. It wasn't much, but for that day, it was my 100%. Hopefully today is a different 100%.
Friday, January 24, 2014
panick
I will start this short, yet thought invoking post, by saying I probably should not be posting after 2 glasses of wine. Or, in fact after a wonderful dinner and a long overdue date night with my husband for that matter. I should just be settling in and calling it a night. But something is on my brain and it wont let me settle.
On the way home from dinner our conversation trail lead us on to money. I said that I never imagined I would ever be on disability. My husband mentioned how no one ever thinks they will be. Then he says "but at least it eliminates the panick". What does that mean, I say. "The panick of not being able to find or hold down a job with your illness, the panick of not being able to drive to work, the panick of finding and affording someone to take care of the kids. It allows you to be home with them". Really? "Im glad it eliminates your panick", I say and thats where my night ended. Stopped short. Right on the Litchfield-Goshen line. At first I was furious at him and then i realized, if yoou have never been through a life changing event like this, you see things differently. There will always be panick. One day I was fine and the next, hour by hour, I couldnt hold my kids, I couldnt walk, couldnt use my arms or even write. It didnt just happen once. It happened 3 times. When I was in Yale, on "super human" steroids and plasma transfer, I lost my vision... within hours. It can happen again at any time. Thats panick. My brain and my body digest it different now then they would have used to. And, as much as I can think of, there is nothing that will take that feeling away. Not a tysabri infusion, not even a cure. If not ms, it could be cancer. It could be a heart attack. It could be anything. Life is fragile. Im not a hypochondriac. I don't live in a sheer state. When I tuck my kids in at night and curl up in my safe warm bed I know how good I have it. I know im blessed... but...im never at ease. Maybe that will change. Im still in my first year here. Those of you with ms or some other life altering event... does that unsettling feeling, that panick, go away. Or, does it always feel like something is looming? Its interesting to observe other peolle and what they panick about and how they panick. My body is so used to it that im not sure how i would cope without it.... but it would be nice!
On the way home from dinner our conversation trail lead us on to money. I said that I never imagined I would ever be on disability. My husband mentioned how no one ever thinks they will be. Then he says "but at least it eliminates the panick". What does that mean, I say. "The panick of not being able to find or hold down a job with your illness, the panick of not being able to drive to work, the panick of finding and affording someone to take care of the kids. It allows you to be home with them". Really? "Im glad it eliminates your panick", I say and thats where my night ended. Stopped short. Right on the Litchfield-Goshen line. At first I was furious at him and then i realized, if yoou have never been through a life changing event like this, you see things differently. There will always be panick. One day I was fine and the next, hour by hour, I couldnt hold my kids, I couldnt walk, couldnt use my arms or even write. It didnt just happen once. It happened 3 times. When I was in Yale, on "super human" steroids and plasma transfer, I lost my vision... within hours. It can happen again at any time. Thats panick. My brain and my body digest it different now then they would have used to. And, as much as I can think of, there is nothing that will take that feeling away. Not a tysabri infusion, not even a cure. If not ms, it could be cancer. It could be a heart attack. It could be anything. Life is fragile. Im not a hypochondriac. I don't live in a sheer state. When I tuck my kids in at night and curl up in my safe warm bed I know how good I have it. I know im blessed... but...im never at ease. Maybe that will change. Im still in my first year here. Those of you with ms or some other life altering event... does that unsettling feeling, that panick, go away. Or, does it always feel like something is looming? Its interesting to observe other peolle and what they panick about and how they panick. My body is so used to it that im not sure how i would cope without it.... but it would be nice!
Saturday, January 18, 2014
Setting The Bar
I must always, always remind myself that I have come a long way. Still, I always thought my weeks would have steadied out by now, my symptoms would have steadied out by now. I wasn't scared when I lost sight in my eye because I knew it would come back. I knew the pins and needles in my face and my tongue, eye, neck, etc.. would go away (they haven't). I knew that I would be the 'Poster Child of MS". I would do the incapable and unthinkable with this disease. I would run marathons, I would have the body of an athlete. I would be travelling the country doing speeches and talks about what Ive conquered... Its been 8 months, to the day, of my diagnosis. Its not quite like that.
It got discouraging for me, as any challenge does that I cannot meet or exceed. Then, in one moment of clarity. Those moments have always puzzled me. You think you are in tune with your life and have an excellent open view of what's going on. Then, you get these moments where you see things in a whole new light. Well, In my moment of clarity, I realized, I AM the poster child of MS. I am the poster child of MY MS. It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next. I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS. When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS. When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS. I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do. And I realize that many other people out there with this disease are their own Poster Children as well. I have come up with a system to keep me going. I start the day running. I make an unattainable list of things to get done. I go, go, go. I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel. I push through the tired and the hurt and I just do it. So, the days I physically or mentally CANT.... Im like a normal person, not supermom. For now, it works.
This is a good week for me. Ive accomplished so much here at home. Ive even been able to watch the kids and the house and the dog while Al has been gone for the week. Some points were not easy, not easy at all. Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist. She has two holes in her heart. One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one. This causes stress on the right side of her hear and will make it larger over time. We have been checking on this since in utero and finally put a surgery date on the calendar, next January. The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun. The surgeons say this is a "routine" procedure....but you know how that is. Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant. Its been on my mind since before her birth, but especially since my diagnosis. When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself". All the doctors are so incredibly compassionate and accommodating though. They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital. Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven. Appt went great. The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI. YAY. I will go back in another 3 months for MRI and visit.
We made another big family decision and decided to adopt a "family" dog. Since our Annie passed away, our kids have been aching for a pet dog. We figured getting a family dog would also ease the stress on MY dog when I do end up getting it. Within a matter of days, thanks to a friend, we found the PERFECT dog. She is a children loving, obedient 5 yr old black lab. Susie has adjusted very quickly to our family and absolutely loves all the attention. She also helps me out here and there getting around the house. Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog.
It got discouraging for me, as any challenge does that I cannot meet or exceed. Then, in one moment of clarity. Those moments have always puzzled me. You think you are in tune with your life and have an excellent open view of what's going on. Then, you get these moments where you see things in a whole new light. Well, In my moment of clarity, I realized, I AM the poster child of MS. I am the poster child of MY MS. It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next. I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS. When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS. When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS. I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do. And I realize that many other people out there with this disease are their own Poster Children as well. I have come up with a system to keep me going. I start the day running. I make an unattainable list of things to get done. I go, go, go. I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel. I push through the tired and the hurt and I just do it. So, the days I physically or mentally CANT.... Im like a normal person, not supermom. For now, it works.
This is a good week for me. Ive accomplished so much here at home. Ive even been able to watch the kids and the house and the dog while Al has been gone for the week. Some points were not easy, not easy at all. Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist. She has two holes in her heart. One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one. This causes stress on the right side of her hear and will make it larger over time. We have been checking on this since in utero and finally put a surgery date on the calendar, next January. The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun. The surgeons say this is a "routine" procedure....but you know how that is. Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant. Its been on my mind since before her birth, but especially since my diagnosis. When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself". All the doctors are so incredibly compassionate and accommodating though. They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital. Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven. Appt went great. The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI. YAY. I will go back in another 3 months for MRI and visit.
We made another big family decision and decided to adopt a "family" dog. Since our Annie passed away, our kids have been aching for a pet dog. We figured getting a family dog would also ease the stress on MY dog when I do end up getting it. Within a matter of days, thanks to a friend, we found the PERFECT dog. She is a children loving, obedient 5 yr old black lab. Susie has adjusted very quickly to our family and absolutely loves all the attention. She also helps me out here and there getting around the house. Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog.
Friday, December 27, 2013
Unwelcome Familiarity
Im not sure what's worse, the diagnosis of MS or becoming familiar with the disease. Along with a 5 day migraine, I started getting "clumsy" mid week last week. I went to put a baking sheet on the stove and rammed it into the side of the counter instead and all the potatoes shot off onto the counter..just misjudged it. I also broke about 4 wine glasses last week alone just by misjudging the distance in between while putting them away and CRASH. Next, I started losing motivation and energy earlier and earlier throughout the day, began tripping over all the kids toys on the floor, bumping into things, etc... By the end of the week I had pins and needles throughout my body, couldn't walk too well after 6pm or so and had terrible pain in my neck and back. So, though I knew there was nothing anyone could do if my symptoms were a result of a new lesion, I figured I should report in with my doctor regardless. The farther I get from my Tysabri infusion, the more likely I am to get a breakthrough lesion. The doctor thought it was urgent enough to send me in to get an MRI and see her that week. They also monitor the tysabri patients closely because of the high risk of PML. So, off I go for a day at Yale. By this point I was SO exhausted. I was looking forward to my nap time in the MRI chamber. The techs are really great about "checking in" while im in the chamber, to make sure im OK. However, everytime they did, It would snap me out of a dead sleep and it would take me a few seconds to realize where in the world I was. Now, those of you that have had an MRI know its not real easy to sleep through. The surface you lay on is very hard and the machine, with its beeps and other sounds are very loud. It has become comforting to me. Half way through the MRI, when they pulled me out to inject the contrast, I let them know this is approximately my 20th MRI, I'm sick, I have 3 young kids at home and I could really use the rest. So, basically, LEAVE ME ALONE.
Following the MRI, I was scheduled for an appointment with my MS specialist to review my results. The appointment wasn't for another 45 minutes so I was looking forward to another opportunity to nap. No sooner than I curled up in my chair in the waiting room and got that warm sleepy feeling, The nurse called me in....REALLY? Ugh. I met with the nurse that takes your vitals, then the one that enters your current medications, then the one that enters what's currently going on....then the doctor. She had not received the official MRI results or report form radiology, but she could access the scans on her computer already. So, she would review them now. She asked if I wanted to see the images as she went through them and I said sure and as she sat there explaining the different areas and views and.....I realized, I was not anxious as I once was. I was not worried about or dreading the results. I just wanted the bottom line. So, here it was: no new lesions, no signs of PML, nothing. The doctor ordered some blood tests and suggested I go downstairs to the walk in clinic for some antibiotics for a possible sinus infection. Off we went... With labs done and antibiotics prescribed, we headed home.
It took about two days for me to start coming around. I just have to assume a sinus infection is what it was and just hope I don't begin becoming antibiotic resistant in this whole process. Saturday, I just barely made it for the last Goshen Holiday Market of the year. I did great and sold a TON of soap. I am ever expanding my products and now have bath bombs, bath salts, scrubs, facial bars, body butter and more. My newest products are wine soaps(a Chardonnay and Cabernet) and soaps and fizzies with Activated Charcoal. Its become quite a fun hobby and profitable too, at least through the Holidays. You can purchase limited soaps on my web site, www.mybeautifullifewithms.com. By Sunday I was much better and was able to begin preparing for Christmas Eve. I had one more dreaded activity before I could concentrate on my Christmas preparations though. My infusion. Luckily, Ivory LOVES going to these dreaded things. We get Dunkin Donuts on the way and look through magazines and watch movies for the two hours Im hooked to the IV. After that was done, I was free to enjoy the Holidays. My Mother in Law was visiting and Al was home. So, there was no reason to rush. We shopped, got mani pedis, etc...
We started festivities by all putting on our new Christmas pajamas, making hot cocoa in our new mugs and watching a new movie(Despicable Me 2).
I love making new traditions with my family. Ones we can look forward to and count on every year and, most importantly, create memories. The next night was Christmas Eve. We hosted, in our new home, and had all our family for food and celebration. Much to the kids delight, we even had a visit from "Santa". One of the older guys from the Goshen Fire Co. (who resembles the jolly old fella in real life) spends the night before Christmas travelling from house to house visiting all the children.
Our community, here in Goshen, is like no other. It is truly "The Land of Milk and Honey". I cannot imagine raising my kids anywhere else. People remark about how far it is from everything. I think that is part of its charm. Even being far, I can get my fresh milk, world class chocolates, Nodines smoked deli meats, Maple Syrup(I only use that, not sugar, so we go through a lot) and more right here in town. I can still leave my kids in the car while running in to the post office. Most of the people that work in the town are our neighbors. My oldest can ride her bike down the road or walk through the woods to her friends house with no concern. There aren't many places like this. I also love the comfort of knowing that when I am not around, that the community will be there to look after my family. Now, or in the future. They will make sure my kids are happy and safe. I can envision the future when our son is belly up to the bar some night at AJs and he gets a tap on the shoulder from one of our friends telling him to get home before his dad has his ass. LOL.
So, Anyway, we spent Christmas Eve in our new home surrounded by our loved ones. It was almost midnight by the time everyone left and we cleaned up and I knew Santa's time was running out for the evening for he was about to drop from exhaustion. So, I had Al start the bedtime routine while I stuffed stockings, put out gifts, wrote letters, ate cookies, powder sugared the floor and, finally, packed..that..stinkin..elf..away.. one.. last.. time. I am hoping he gets lost in the shuffle and forgotten about by next Christmas. How in the world, when your children go to sleep with you and wake up with you are you supposed to have time without them looking to move that thing? A ritual developed, obviously, by someone with way too much spare child free time on their hands.
In our household, we like to instill in our children, the TRUE meaning of Christmas. In fact, every year, I read them a story about the real meaning of Christmas. I made a point of only getting them one gift each. I do not know what happened.
Following the MRI, I was scheduled for an appointment with my MS specialist to review my results. The appointment wasn't for another 45 minutes so I was looking forward to another opportunity to nap. No sooner than I curled up in my chair in the waiting room and got that warm sleepy feeling, The nurse called me in....REALLY? Ugh. I met with the nurse that takes your vitals, then the one that enters your current medications, then the one that enters what's currently going on....then the doctor. She had not received the official MRI results or report form radiology, but she could access the scans on her computer already. So, she would review them now. She asked if I wanted to see the images as she went through them and I said sure and as she sat there explaining the different areas and views and.....I realized, I was not anxious as I once was. I was not worried about or dreading the results. I just wanted the bottom line. So, here it was: no new lesions, no signs of PML, nothing. The doctor ordered some blood tests and suggested I go downstairs to the walk in clinic for some antibiotics for a possible sinus infection. Off we went... With labs done and antibiotics prescribed, we headed home.
It took about two days for me to start coming around. I just have to assume a sinus infection is what it was and just hope I don't begin becoming antibiotic resistant in this whole process. Saturday, I just barely made it for the last Goshen Holiday Market of the year. I did great and sold a TON of soap. I am ever expanding my products and now have bath bombs, bath salts, scrubs, facial bars, body butter and more. My newest products are wine soaps(a Chardonnay and Cabernet) and soaps and fizzies with Activated Charcoal. Its become quite a fun hobby and profitable too, at least through the Holidays. You can purchase limited soaps on my web site, www.mybeautifullifewithms.com. By Sunday I was much better and was able to begin preparing for Christmas Eve. I had one more dreaded activity before I could concentrate on my Christmas preparations though. My infusion. Luckily, Ivory LOVES going to these dreaded things. We get Dunkin Donuts on the way and look through magazines and watch movies for the two hours Im hooked to the IV. After that was done, I was free to enjoy the Holidays. My Mother in Law was visiting and Al was home. So, there was no reason to rush. We shopped, got mani pedis, etc...
We started festivities by all putting on our new Christmas pajamas, making hot cocoa in our new mugs and watching a new movie(Despicable Me 2).
So, Anyway, we spent Christmas Eve in our new home surrounded by our loved ones. It was almost midnight by the time everyone left and we cleaned up and I knew Santa's time was running out for the evening for he was about to drop from exhaustion. So, I had Al start the bedtime routine while I stuffed stockings, put out gifts, wrote letters, ate cookies, powder sugared the floor and, finally, packed..that..stinkin..elf..away.. one.. last.. time. I am hoping he gets lost in the shuffle and forgotten about by next Christmas. How in the world, when your children go to sleep with you and wake up with you are you supposed to have time without them looking to move that thing? A ritual developed, obviously, by someone with way too much spare child free time on their hands.
In our household, we like to instill in our children, the TRUE meaning of Christmas. In fact, every year, I read them a story about the real meaning of Christmas. I made a point of only getting them one gift each. I do not know what happened.
Santa finished up....I mean I finished up and went upstairs to tuck everyone in and they were all sound asleep :( Though I missed watching them all flutter to sleep, I kissed them all and wished them a Merry Christmas.
The morning was no different than anyone else's house, a flurry of wrapping paper and candy. But, in me, it was different. It will always be. For better AND worse. Regardless, It was the best Christmas ever!
Friday, November 29, 2013
Thanks and giving
It is the time of year to give thanks. It is the DAY to give thanks. We ALL, every one of us, have so much to be thankful for. I especially do. This year it seems, ironically, I have more to be thankful for than any other year. There's my family. Composed of my three incredible, beautiful children that I am blessed to have. There's my husband, who is to blame for them :). My parents, whom gave up their lives as they knew it and moved in with us and help endlessly to raise our children. There's my friends. I have so many more this year than any other. So many that rally around my family and I. There's my health. Yes, my health. It could be so much worse. I am able to enjoy life and my family and I'm so thankful for that.
Ive carried with me a list of grudges and regrets throughout my life and even those have become blessings and things to be thankful for. After all, everything happens for a reason. So, opportunities missed and people gone from my life (besides death, just no longer involved in my life) all lead me to where I am now. So each and every regret I now see as a blessing.
During this Holiday season I've been trying to open my eyes towards others. Ive been trying to do more good deeds and be more giving to others. Theres been so much tragedy and loss in the world and so much hype about "good deeds" and "paying it forward". We hear so many stories of people doing good for others. Yet...sadly...I haven't seen much of that in my every day life. I see anger and spite and aggravation. It makes doing good very discouraging. Ive been trying to do a good deed every day. I wish we all could. In my "new life" I try to show appreciation to every person that does something good. After all, whats a few dollars spent on a gift card or a few minutes to write a thank you note.
Speaking of positivity and optimism. I have officially reached my goal for an assistance dog. +ecad(www.ecad1.org) informed me I have raised and exceeded my $8500 and I am at the top of their placement list. They are currently looking for a suitable dog and will let me know as soon as they find one. My intention is to make my fundraiser annual event to raise funds for an assistance dog for someone else that might not be as capable at fundraising. Also, any donations made to ecad in my name still will go directly to another clients dog. So, if you still want to donate, you will be helping someone else get their dog AND helping me get mine sooner. Thanks to my local connections, The event got a lot of press exposure: http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis, http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis.
I cannot wait to get the call that a Team Training has been scheduled. I have been starting to talk it up to the kids and figuring out what the first thing we will do is. I'm thinking maybe go on a hike or maybe take a little run.....nothing big, maybe just around the backyard or to the bus stop. We are now saving for our "accessories". We will need a balancing harness, which can run upwards to $400. We need collars and leads and crates and beds and an underground fence controller. I want to take the kids on a big shopping trip before I go off for two weeks for Team Training to get them excited about our new addition. In a way, its tough to get excited about leaving the kids for two whole weeks, but it is required to train with the new dog. They plan training every day from 8am to 5pm for two weeks. 4 or 5 days in, they (the ecad trainers) assign the dogs to the clients. Then the real training begins. We even go on field trips to get accustomed to the dogs in public. I took the kids to meet the new litter of ecad puppies. They are 3 months old and already in work mode. They do not chew or bite or climb all over you like regular puppies. They already have manners. They sit, walk on leashes, use the treadmill, etc... amazing. ECAD has just recently purchased some Guinea Pigs and a rabbit because they were having a difficult time getting the dogs attention in pet stores. So, they are doing some in house training with their pups. Its just amazing what they think of. My church has decided, though I have reached my funding goal, to continue with their fundraiser. The children in Sunday school are making dog treats to sell at the Living Gift Market at church. All proceeds go to ecad. Its such a great cause.
My symptoms are holding steady. Ive had my 6th or so Tysabri infusion. Besides the headaches and leg cramps everything else is the same. Still balance issues and pins and needles and vision stuff, but that's old news. This drug, the one I once almost refused, I am even thankful for. Its keeping my attacks at bay and preventing any new lesions. I am due for another MRI next month and hopefully will confirm that. I Have a friend with progressive MS that was hoping to begin Tysabri and found out she is positive for the JC virus. Very disappointing. Tysabri is the single most effective medication on the market for preventing future attacks of MS.
I have been very busy with the local farmer's market. We have a Holiday Market at which I sell soap and also help with PR and marketing. I have also been receiving many Christmas orders for soap. Its available on my web site, www.mybeautifullifewithms.com and through just contacting me. I have started making quite the line of products:
Ive carried with me a list of grudges and regrets throughout my life and even those have become blessings and things to be thankful for. After all, everything happens for a reason. So, opportunities missed and people gone from my life (besides death, just no longer involved in my life) all lead me to where I am now. So each and every regret I now see as a blessing.
During this Holiday season I've been trying to open my eyes towards others. Ive been trying to do more good deeds and be more giving to others. Theres been so much tragedy and loss in the world and so much hype about "good deeds" and "paying it forward". We hear so many stories of people doing good for others. Yet...sadly...I haven't seen much of that in my every day life. I see anger and spite and aggravation. It makes doing good very discouraging. Ive been trying to do a good deed every day. I wish we all could. In my "new life" I try to show appreciation to every person that does something good. After all, whats a few dollars spent on a gift card or a few minutes to write a thank you note.
Speaking of positivity and optimism. I have officially reached my goal for an assistance dog. +ecad(www.ecad1.org) informed me I have raised and exceeded my $8500 and I am at the top of their placement list. They are currently looking for a suitable dog and will let me know as soon as they find one. My intention is to make my fundraiser annual event to raise funds for an assistance dog for someone else that might not be as capable at fundraising. Also, any donations made to ecad in my name still will go directly to another clients dog. So, if you still want to donate, you will be helping someone else get their dog AND helping me get mine sooner. Thanks to my local connections, The event got a lot of press exposure: http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis, http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis.
I cannot wait to get the call that a Team Training has been scheduled. I have been starting to talk it up to the kids and figuring out what the first thing we will do is. I'm thinking maybe go on a hike or maybe take a little run.....nothing big, maybe just around the backyard or to the bus stop. We are now saving for our "accessories". We will need a balancing harness, which can run upwards to $400. We need collars and leads and crates and beds and an underground fence controller. I want to take the kids on a big shopping trip before I go off for two weeks for Team Training to get them excited about our new addition. In a way, its tough to get excited about leaving the kids for two whole weeks, but it is required to train with the new dog. They plan training every day from 8am to 5pm for two weeks. 4 or 5 days in, they (the ecad trainers) assign the dogs to the clients. Then the real training begins. We even go on field trips to get accustomed to the dogs in public. I took the kids to meet the new litter of ecad puppies. They are 3 months old and already in work mode. They do not chew or bite or climb all over you like regular puppies. They already have manners. They sit, walk on leashes, use the treadmill, etc... amazing. ECAD has just recently purchased some Guinea Pigs and a rabbit because they were having a difficult time getting the dogs attention in pet stores. So, they are doing some in house training with their pups. Its just amazing what they think of. My church has decided, though I have reached my funding goal, to continue with their fundraiser. The children in Sunday school are making dog treats to sell at the Living Gift Market at church. All proceeds go to ecad. Its such a great cause.
I have been very busy with the local farmer's market. We have a Holiday Market at which I sell soap and also help with PR and marketing. I have also been receiving many Christmas orders for soap. Its available on my web site, www.mybeautifullifewithms.com and through just contacting me. I have started making quite the line of products:
I am also working on custom monogrammed MS jewelry to sell on my web site. Yes, very busy. Not too busy to take some time off for family and friends. In fact, we up and left home for Thanksgiving and travelled to Newport. Yes, where I first got diagnosed with MS. I must say, last night going to sleep remembering the last time I slept here was kind of unnerving, but I woke up and everything is fine and I am enjoying the break... and even have time to blog! I plan to actually make up for things I didnt do last time, like take the kids to Cupcake Charlie's and watch the Holiday Lights Boat Parade tonight from Bannister's Warf. You can find my reviews on www.Tripadvisor.com.
Time to get out there and enjoy! Happy Thanksgiving everyone!
Thursday, November 14, 2013
Winding down
I stood up to say a few words, in a crowded room full of my friends and "support network" at my fundraiser. I didn't have a speech planned, but seamlessly rattled my way through a brief history of my illness and reassured guests why they were there. It wasn't like a wedding, where some friends or side of the family may have something against you. Or, like a meeting or awards ceremony were people might think you're not doing a good job, or worthy of the award. Everyone in that room supported me, thought highly of me, was "on my side". They were there because they wanted to be, for my "cause". So, how could I feel completely alone? I guess anyone with an illness or disease feels the same. Or, even anyone "in touch" with themselves. No one knows what is inside your head, what you feel, what struggles you go through mentally and physically.
The fundraiser went great. The best part, I organized it I planned every detail, printed every ticket, posted every post, recruited all the marketing, etc... I did have some help with the Silent Auction. Thank goodness, because it was much more expansive than I predicted. However, I can still do it! It was a great night. Seamless. Just what I imagined it would be. Actually, I plan on doing the same thing every year to raise money for someone else that has MS and is in need of an assistance dog.
I spoke with ECAD on Tuesday and they told me I was at the top of their list. I have raised just about all the money they require. So, as soon as I complete that goal, they find me an appropriate dog or they schedule a team training, they will call. They told me that they have a long list of clients, but since I am the closest to raising the money first, I would be put on the top of the list. This made me excited and sad at the same time. Is there someone out there that needs a dog more than me? Most likely. So, am I taking there dog? It leaves me with some internal struggling.
I am fortunate, however, that I even was able to attend my own fundraiser. Beginning early last week I started not to feel well and dreaded another upcoming attack. Even up until Sunday afternoon I wasn't great. Luckily I made it and hopefully was just stress kicking in.
So, what now? Just back to my stay-at-home mom life I suppose. I make home made goats milk soap and sell them at our local Winter Farmer's Market, I will carry on as being President of our elementary school's PTO. I am also trying to work on my web site, www.mybeautifullifewithms.com, where I hope to provide more of a resource for people effected by MS. I will be custom designing some MS merchandise to sell there as well. I hope to save up and get my TBird painted before I tuck it away for winter. I won my first car show trophy with it this past Saturday. Makes me so proud to drive my grand dads car.
The fundraiser went great. The best part, I organized it I planned every detail, printed every ticket, posted every post, recruited all the marketing, etc... I did have some help with the Silent Auction. Thank goodness, because it was much more expansive than I predicted. However, I can still do it! It was a great night. Seamless. Just what I imagined it would be. Actually, I plan on doing the same thing every year to raise money for someone else that has MS and is in need of an assistance dog.
I spoke with ECAD on Tuesday and they told me I was at the top of their list. I have raised just about all the money they require. So, as soon as I complete that goal, they find me an appropriate dog or they schedule a team training, they will call. They told me that they have a long list of clients, but since I am the closest to raising the money first, I would be put on the top of the list. This made me excited and sad at the same time. Is there someone out there that needs a dog more than me? Most likely. So, am I taking there dog? It leaves me with some internal struggling.
I am fortunate, however, that I even was able to attend my own fundraiser. Beginning early last week I started not to feel well and dreaded another upcoming attack. Even up until Sunday afternoon I wasn't great. Luckily I made it and hopefully was just stress kicking in.
So, what now? Just back to my stay-at-home mom life I suppose. I make home made goats milk soap and sell them at our local Winter Farmer's Market, I will carry on as being President of our elementary school's PTO. I am also trying to work on my web site, www.mybeautifullifewithms.com, where I hope to provide more of a resource for people effected by MS. I will be custom designing some MS merchandise to sell there as well. I hope to save up and get my TBird painted before I tuck it away for winter. I won my first car show trophy with it this past Saturday. Makes me so proud to drive my grand dads car.
What else? Only time will tell.
Friday, October 25, 2013
Whats Been Going On
Well, I figured it was about time for another blog. Ive been out in the world spreading the word about my upcoming fundraiser and have met so many so many new people. Some, that even follow my blog already and have never met me. Its been great and the more I am out there spreading the word, the more I realize why ECAD (East Coast Assistance Dogs) requires fundraising. It truly is an incredible way of advertising and making sure the candidate is ready to work for their dog.
The Register Citizen ran a great article about the fundraiser , by Hemmings Motor News and by the Brass City Cruisers as well. Also listed on CT.Now, The Black Top Rebels and more. The Twilight Cruisers have been wonderful about helping spread the word, and actually made a large donation to the fund. But you can find the most info on my own site at : http://www.mybeautifullifewithms.com/november-10-fundraiser.html . Seems like it will be quite the event. Its even getting air-time on WZBG all of next week. It might be too cold, or too late in the year for avid Classic Car owners to venture out with their prize possessions, but Im sure we will still get a decent showing and the Wine Tasting Benefit is where things should really get going. Miranda Vineyard is hosting, Jennifer Devine is presenting a wonderful catering menu, Andrew Jaimeson is the nights musician...and you should see the list of Silent Auction items. The auction will open at 3pm for the car cruise and final bids must be in by 7:30pm. The event will also feature two 50/50 raffles, one for each part of the days events and a presentation, at 6:30pm, by ECAD and one of their assistance dogs. It has been all consuming organizing the activities(kind of reminds me of my job when I used to run the vineyard...I miss it). It is a bit more difficult now. Even just driving around and hanging flyers. Its putting me into places of unfamiliarity and when Im in those situations is when I get flustered and realize how much I AM NOT where I used to be, functioning wise. However, the more unfamiliar ground I conquer...the more it becomes familiar.
What surprises me is how willing people are to give to my fund (donations, buying tickets, silent auction gifts, etc...) when they hear my story. Even though I LOOK fine. I would think people would just look at me and say "well, how bad does she need this, she looks fine to me". But they don't. I just posted a link on the facebook page of MY BEAUTIFUL LIFE, with m.s.. It was of an interview with a woman who has MS and how grateful she is of her support network. When you watch the video she appears perfectly normal and capable and professional, like she could run the world, and then you hear her talk about the things she cant do. Its amazing to see .....Its just like I feel. Heres a link to the video :http://on.aol.com/video/the-importance-of-family-support-for-multiple-sclerosis---kellys-story-489140347
Ive been driving the heck out of my "new-old" car. So much so that the breaks have failed. We are trying a last minute fix tomorrow so we can attend the Borgeson Car Show on Sunday...one of my goals since I got the car. We attended our first car show a few weekends ago. The kids loved it. This car came to us at just the right time. We are more limited now as to the activities we can do with the kids. Attending a car show...no problem. The car is itself is also great for me to drive. It has a swing away steering wheel that makes it easier to get in the car. The squared off fenders also make it really easy to see where Im at when pulling in places... can be a challenge with no depth perception.
Medically, I seem to remain on an even plain. No new relapses. I went for my FIFTH Tysabri infusion yesterday. I cant believe its been so many. My MS specialist asks how im doing with the infusions and doesn't like my reply of "well, my brain isn't turning to mush yet". She doesn't think I should be worried about the high risk of PML that comes along with this medication. I am though. I am more worried of having another attack though. Every time I get a little headache I get scared its going to turn into a 3 day migraine ending in permanent facial numbness or loss of vision...again. So far so good though. Nights are my worst time. It will be a very welcome time when both little ones sleep through the night. Al and I seem to reverse roles at night...when he is home. The slightest cry is like lights and sirens to me. Im out of bed in a flash, half blind, and ricocheting off the walls and down the hall. Al only wakes up if I REALLY pester him that its his turn. I have NO IDEA how he functions properly at work nights. I think they have 3 minutes from when the call comes in to when they pull the truck out of the firehouse. It takes me longer than that to wake him sometimes. At night, as Im bouncing around the house(literally) I often think about the potential of my assist dog. ECAD makes a soft balancing harness as well that the dogs are comfortable sleeping in. So, I can just grab on and safely "go to the scene" at night. OR..I can even send the dog in to retrieve the crying child and bring them back(they wont come down the hall alone at night for fear of monsters....).
Well, thats about it. No fun stuff since last post, like sitting on the horse or flying or anything. Its been all Farmers Market and PTO and Fundraiser. Fundraiser...I still have 50 tickets to sell... you can purchase on the web site... you NEED a ticket before the day. I need to reach my $8000 goal to begin the training process with the dog and I would like to be able to "give back" to all my donors by providing a great night of fun. So, please come!!
PS- Im having trouble posting pics to the blog site. So, if you want to see some pics of what we have been up to, go to my facebook page, My Beautiful Life With MS, or my event FB page: https://www.facebook.com/pages/Cruise-for-a-Cause-Whine-for-a-Cure-Wine-Tasting/313818755424067
Looking forward to seeing you all soon
The Register Citizen ran a great article about the fundraiser , by Hemmings Motor News and by the Brass City Cruisers as well. Also listed on CT.Now, The Black Top Rebels and more. The Twilight Cruisers have been wonderful about helping spread the word, and actually made a large donation to the fund. But you can find the most info on my own site at : http://www.mybeautifullifewithms.com/november-10-fundraiser.html . Seems like it will be quite the event. Its even getting air-time on WZBG all of next week. It might be too cold, or too late in the year for avid Classic Car owners to venture out with their prize possessions, but Im sure we will still get a decent showing and the Wine Tasting Benefit is where things should really get going. Miranda Vineyard is hosting, Jennifer Devine is presenting a wonderful catering menu, Andrew Jaimeson is the nights musician...and you should see the list of Silent Auction items. The auction will open at 3pm for the car cruise and final bids must be in by 7:30pm. The event will also feature two 50/50 raffles, one for each part of the days events and a presentation, at 6:30pm, by ECAD and one of their assistance dogs. It has been all consuming organizing the activities(kind of reminds me of my job when I used to run the vineyard...I miss it). It is a bit more difficult now. Even just driving around and hanging flyers. Its putting me into places of unfamiliarity and when Im in those situations is when I get flustered and realize how much I AM NOT where I used to be, functioning wise. However, the more unfamiliar ground I conquer...the more it becomes familiar.
What surprises me is how willing people are to give to my fund (donations, buying tickets, silent auction gifts, etc...) when they hear my story. Even though I LOOK fine. I would think people would just look at me and say "well, how bad does she need this, she looks fine to me". But they don't. I just posted a link on the facebook page of MY BEAUTIFUL LIFE, with m.s.. It was of an interview with a woman who has MS and how grateful she is of her support network. When you watch the video she appears perfectly normal and capable and professional, like she could run the world, and then you hear her talk about the things she cant do. Its amazing to see .....Its just like I feel. Heres a link to the video :http://on.aol.com/video/the-importance-of-family-support-for-multiple-sclerosis---kellys-story-489140347
Ive been driving the heck out of my "new-old" car. So much so that the breaks have failed. We are trying a last minute fix tomorrow so we can attend the Borgeson Car Show on Sunday...one of my goals since I got the car. We attended our first car show a few weekends ago. The kids loved it. This car came to us at just the right time. We are more limited now as to the activities we can do with the kids. Attending a car show...no problem. The car is itself is also great for me to drive. It has a swing away steering wheel that makes it easier to get in the car. The squared off fenders also make it really easy to see where Im at when pulling in places... can be a challenge with no depth perception.
Medically, I seem to remain on an even plain. No new relapses. I went for my FIFTH Tysabri infusion yesterday. I cant believe its been so many. My MS specialist asks how im doing with the infusions and doesn't like my reply of "well, my brain isn't turning to mush yet". She doesn't think I should be worried about the high risk of PML that comes along with this medication. I am though. I am more worried of having another attack though. Every time I get a little headache I get scared its going to turn into a 3 day migraine ending in permanent facial numbness or loss of vision...again. So far so good though. Nights are my worst time. It will be a very welcome time when both little ones sleep through the night. Al and I seem to reverse roles at night...when he is home. The slightest cry is like lights and sirens to me. Im out of bed in a flash, half blind, and ricocheting off the walls and down the hall. Al only wakes up if I REALLY pester him that its his turn. I have NO IDEA how he functions properly at work nights. I think they have 3 minutes from when the call comes in to when they pull the truck out of the firehouse. It takes me longer than that to wake him sometimes. At night, as Im bouncing around the house(literally) I often think about the potential of my assist dog. ECAD makes a soft balancing harness as well that the dogs are comfortable sleeping in. So, I can just grab on and safely "go to the scene" at night. OR..I can even send the dog in to retrieve the crying child and bring them back(they wont come down the hall alone at night for fear of monsters....).
Well, thats about it. No fun stuff since last post, like sitting on the horse or flying or anything. Its been all Farmers Market and PTO and Fundraiser. Fundraiser...I still have 50 tickets to sell... you can purchase on the web site... you NEED a ticket before the day. I need to reach my $8000 goal to begin the training process with the dog and I would like to be able to "give back" to all my donors by providing a great night of fun. So, please come!!
PS- Im having trouble posting pics to the blog site. So, if you want to see some pics of what we have been up to, go to my facebook page, My Beautiful Life With MS, or my event FB page: https://www.facebook.com/pages/Cruise-for-a-Cause-Whine-for-a-Cure-Wine-Tasting/313818755424067
Looking forward to seeing you all soon
Wednesday, October 9, 2013
A Day in the Life
The day started as it continued throughout. It took me 5 tries to throw a Q-Tip in the trash can. We have the type of can that you step on the pedal and it opens. FIVE times. Such a simple thing. Frustrated me at the time, but I didn't realize the WHOLE day would go like that. My coordination is way off today. Woke up 30 minutes before we had to leave for the bus. Both small kids wanted to be carried downstairs. I used to be able to handle this, ask anyone, my arms used to be full of kids...one on each hip. Then, this. So, I choose the squeakiest wheel and carried it down first, clutching the stair rail and stepping very precariously. I then put that one down, which is now screaming because I let them go, and I go up for the next (you see how I gain strength and fit in exercise). I get the second, who is still screaming because they were abandoned and I bring them down and place them next to the other screaming abandoned child. They are both screaming now because they still both want to be carried. At a point, as little as a month back, they would be my "happy travelers" and both climb aboard my wheelchair, but I refuse to use it now, no matter how tired I get. So, meanwhile the oldest is shouting demands such as; make my lunch Im going to be late and "Where are my shoes" and such... We make it out the door and into the van, half in our underwear, and make the bus. One down. When we arrive back to the house, the screaming begins again because one wants to stay in the van and watch TV and one wants to go in and neither want to be alone....Typical morning in our house, but I can handle it. Al is on a 24, as usual lately. So, its only me but Im SO doing it. This morning, However, my brain is on my fundraiser. In between one screaming and the other covering the house with baby powder, I am on the computer designing fliers and tickets and such.
I finally got approved for an ECAD Assistance Dog and I need to raise $8000. They say it takes most people 6 months to a year to raise the money. They don't know ME. So, I have to blow the roof off this fundraising. Miranda Vineyard offered their venue for minimal to help my cause. So, I have a place. The date is Nov 10th. Now, Im multi-tasking trying to used the computer and tend to the kids....who are behaving like a pack of wild wolves. I can only use the laptop to design and you really wouldn't think how much hand-eye coordination it takes to use a laptop or pc. Its not easy. I keep deleting and hitting the wrong button and.....Argggg.
My mom had a friend over in the midst of this and I apologized ever so much for my house being a mess, but Im trying to organize a fundraiser. Naturally she asks and I explain. She then tells me her mom works at the local radio station......what are the odds..... within a half hour I sent her all the info.
In one day I have created the flyer, made tickets, contacted a band and began to advertise. See my web site www.mybeautifullifewithms.com or my facebook page (my beautiful life with ms)
for details. I still need a lot to come together....
Back to my day... I pour maple syrup all over the counter instead of in my coffee cup because I misjudge it... What the heck. So, I take AJ out to play outside and blow off some steam by raking leaves...I got poked in the eye by branches FOUR TIMES because I didn't see them coming.... It went on.
Through this fundraising process I am still amazed at the same old thing. Some people will drop everything to help, to offer whatever they can. Then, some, are so self concerned and absorbed and busy with nonsense that they cant even respond to an email....really? Then I think, I used to be there. I used to sit behind my desk at work and delete all the emails I couldn't do anything about immediately or that didn't directly concern me. I was one of those people. Never again..
One last note... ECAD has a live puppy cam. You can watch the puppies just born. You can also donate...be sure to put my name(Tina Torizzo) in the notes when you donate online or by check... www.ecad1.org
I finally got approved for an ECAD Assistance Dog and I need to raise $8000. They say it takes most people 6 months to a year to raise the money. They don't know ME. So, I have to blow the roof off this fundraising. Miranda Vineyard offered their venue for minimal to help my cause. So, I have a place. The date is Nov 10th. Now, Im multi-tasking trying to used the computer and tend to the kids....who are behaving like a pack of wild wolves. I can only use the laptop to design and you really wouldn't think how much hand-eye coordination it takes to use a laptop or pc. Its not easy. I keep deleting and hitting the wrong button and.....Argggg.
My mom had a friend over in the midst of this and I apologized ever so much for my house being a mess, but Im trying to organize a fundraiser. Naturally she asks and I explain. She then tells me her mom works at the local radio station......what are the odds..... within a half hour I sent her all the info.
In one day I have created the flyer, made tickets, contacted a band and began to advertise. See my web site www.mybeautifullifewithms.com or my facebook page (my beautiful life with ms)
for details. I still need a lot to come together....
Back to my day... I pour maple syrup all over the counter instead of in my coffee cup because I misjudge it... What the heck. So, I take AJ out to play outside and blow off some steam by raking leaves...I got poked in the eye by branches FOUR TIMES because I didn't see them coming.... It went on.
Through this fundraising process I am still amazed at the same old thing. Some people will drop everything to help, to offer whatever they can. Then, some, are so self concerned and absorbed and busy with nonsense that they cant even respond to an email....really? Then I think, I used to be there. I used to sit behind my desk at work and delete all the emails I couldn't do anything about immediately or that didn't directly concern me. I was one of those people. Never again..
One last note... ECAD has a live puppy cam. You can watch the puppies just born. You can also donate...be sure to put my name(Tina Torizzo) in the notes when you donate online or by check... www.ecad1.org
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