As I get out and about more, it is so nice to hear how my friends are keeping up with my blog. It allows them to know whats going on with me, react to me accordingly and let me talk about other more upbeat things than my medical condition. I am ultimately fascinated and proud to hear that the blog is really helping people, in ways I never even ive never even imagined. Its helping Nurses understand the patients side, rather than just the medical side. Its helping family understand what other family members are actually going through. Its helping people be more appreciative and thankful of their lives. Almost all that I had hoped for with the blog. There are also people who have not heard about whats gone on and instead of talking forever about it, I refer them to the blog. So, if its your first time reading, Ive documented my journey along the way. If you want, start at the beginning and work your way up. Hopefully you will get something out of it!
As many of you know, the weather has been cold here the past few days. Cold enough for me to wear my chinchilla slippers....I know what you are thinking, I'm not a huge advocate of wearing animals either, but they were a gift from my Grammie. One of the symptoms of MS is cold feet. So, the first time I arrived home from the hospital, my Grammie called and asked if I could use slippers. I envisioned the LL Bean down booties that my aunt got me for college. So, I told her yes. My feet were freezing since I got diagnosed. Well, when she came up to visit and give me my slippers, they weren't simple LL Bean down booties, they were chinchilla lined slippers. Obviously VERY nice slippers. She was so proud at how soft and comfortable they would be. Unfortunately, I had pins and needles sensation from my neck down to my toes. So, everything, even something as soft as chinchilla, felt gritty and rough. Even to my hands they did not feel soft. I wore them though, and they were extremely warm and actually stopped my legs from twitching due to them being cold.
I slowly over the next 4 weeks got normal sensation back in my body. Feet first, then hands, then torso. By then it was June and entirely too warm to wear chinchilla slippers. Well, the other night, when I wanted to sit out on the deck and enjoy the chilly evening, I grabbed my chinchilla slippers. Oh my goodness! For the first time I could feel the softness on my feet and between my toes. It was like heaven. I'm hoping one day in the future to have one of these revelations when it comes to feeling on the side of my face, or even my vision. I cant wait!
If any of you are on my FB page, you would have heard I can legally begin driving (I also have a FB page specifically for my MS blogs: https://www.facebook.com/MyBeautifulLifeWithMultipleSclerosis?ref=hl). So, I have been getting short driving trips in without the kids. Regular driving feels totally natural. Its the backing into spaces and depth perception that I need some more practice on. I'm an overly cautious driver anyway. So, its just a matter of time and practice. I would like to get to the point now where I just drive locally and during the day. I would like to drive the 2 miles to the beach to bring the kids or drop ivory off at camp. I would like to be able to drive to school, church, Post Office... Just in town. That would be huge!
Most household items I can order online and they pretty much arrive the next day. I use soap.com or vine.com. Shipping is free too. As far as groceries, I still depend on others, or accompany Al and the kids. He watches over the kids and I cling to the side of the cart to keep my balance. It works out pretty well. I'm hoping to get farther along with the balance. Uneven ground is still difficult. When I take the kids to the beach (with my parents or Al of course) I feel like people think I'm drunk. I stagger pretty good on grass and sand. That's when my service dog would come in handy. If you haven't been on the site, check it out: http://ecad1.org/default.htm. Look under videos and Good Day New York. It has a great clip on how these dogs can aide people with MS.
I do many balance exercises with my Physical Therapist and he makes sure to tell me what an incredible job I'm doing.....as I'm stumbling all over the floor trying to catch my balance. Not like it used to be. I have to remind myself that improvement is slow, but I'm just not a patient person. Especially from someone who has been so balanced and flexible and athletic all their life. I have faith I will get there and there will be one day that people look at me and don't know anything is wrong.
I had my first session with my speech therapist the other day. Its amazing how things that come natural to people from the day they are born don't come natural to me anymore, that I have to work on things such as swallowing and breathing while I speak. The toughest exercise she gave me, and try this, is to stick your tongue out, bite it slightly and with it out, try swallowing. It isn't easy, but the only exercise to strengthen where your tongue attaches to your throat. All the stuff I'm learning. LOL.
I am due for my next Tysabri infusion on Monday. I cant believe its been 4 weeks already. I also cant believe I have been symptom free. After getting hit so hard and so many times by these attacks, I am thankful, yet weary, to have reprieve from them. Its nice to see progress, to walk down stairs carrying laundry(on my feet, not my butt). To carry my kids to bed. To make dinner and clean up after too. All the things I saw as "chores".
Friday, July 26, 2013
Friday, July 19, 2013
Establishing routine back into my life, with MS
Things are beginning to return to "normal" around here. I am sensing a small amount of improvement every day. My balance and stamina are much better. I am able to get around without the need of my wheelchair, for the most part. I am also able to keep up with the day better. Sometimes I feel like I cannot make it another minute without laying down for a nap, or cant lift my arms for they are so heavy, but I push through and do it. I am just about able to get back into the routine with my kids , which is great. As long as I am home with them. Out in the world is still too tough because I cant yet keep up with them as they run away(which they do).
I got to the pool for the first time the other night. It felt great. I felt almost completely normal in the water. I could even play with the kids. Its amazing how they reacted to me too. They knew I felt different in the water and they felt comfortable with me. The two things I miss most don't have anything to do with my body, brain, vision or anything... its the bond with my kids I had before my stays in the hospital and the bond with my husband we had in the hospital. I'm trying very hard to get these back a little every day.
My second visit with my Specialist at Yale, Dr Bailey, was this week. Its one of the first doctors visits Ive had in a long time that I haven't had to get blood drawn, or an MRI or something. They assessed where I was at neurologically and reminded me it could take up to a year to get back to "baseline". That period gets longer ever time I talk to a doctor. They watched me walk and timed my walking to see how fast I could walk. The nurse asked be about any possible side effects of the Tysabri or any concerns I have. Besides the fact that any day the white matter in my brain could start to get eaten away, I have no concerns or side effects. They gave us a tour of their brand new infusion center that they will have up and running by September. It will make my monthly Tysabri infusions much more comforting knowing that my doctor is right there. Besides, the skill and competence of the Yale staff are hard to find elsewhere.
So, I received my long awaited ipad. The tablet that is supposed to make my world so much easier....It sucked. I honestly do not understand all the hype of the apple products, granted it was an ipad 2, not the latest and greatest, but I feel it was comparable to the first computer I ever owned. Awful. I had it one night and returned it. I think I will stick with my
">Galaxy Tab, loved it. For the few shortcomings it had, it was worlds better than the ipad.
My routine at home is holding steady, and building momentum. Instead of just resting, PT, OT, caring for my plants, watching the fish and reading my cooking magazines. I am now back in charge of the kids, house cleaning, laundry, etc... I forget how much work it is. My garden has taken a lot to keep up with with all this humidity, instead of pulling weeds, I'm pulling mushrooms. I made my own mildew/pest repellent spray with baking soda, dish detergent and water, that seems to be working good. http://tlc.howstuffworks.com/home/homemade-organic-gardening-sprays.htm. Two plants that are thriving in this weather are my orchid and avocado tree.
I got to the pool for the first time the other night. It felt great. I felt almost completely normal in the water. I could even play with the kids. Its amazing how they reacted to me too. They knew I felt different in the water and they felt comfortable with me. The two things I miss most don't have anything to do with my body, brain, vision or anything... its the bond with my kids I had before my stays in the hospital and the bond with my husband we had in the hospital. I'm trying very hard to get these back a little every day.
My second visit with my Specialist at Yale, Dr Bailey, was this week. Its one of the first doctors visits Ive had in a long time that I haven't had to get blood drawn, or an MRI or something. They assessed where I was at neurologically and reminded me it could take up to a year to get back to "baseline". That period gets longer ever time I talk to a doctor. They watched me walk and timed my walking to see how fast I could walk. The nurse asked be about any possible side effects of the Tysabri or any concerns I have. Besides the fact that any day the white matter in my brain could start to get eaten away, I have no concerns or side effects. They gave us a tour of their brand new infusion center that they will have up and running by September. It will make my monthly Tysabri infusions much more comforting knowing that my doctor is right there. Besides, the skill and competence of the Yale staff are hard to find elsewhere.
So, I received my long awaited ipad. The tablet that is supposed to make my world so much easier....It sucked. I honestly do not understand all the hype of the apple products, granted it was an ipad 2, not the latest and greatest, but I feel it was comparable to the first computer I ever owned. Awful. I had it one night and returned it. I think I will stick with my
">Galaxy Tab, loved it. For the few shortcomings it had, it was worlds better than the ipad.
My routine at home is holding steady, and building momentum. Instead of just resting, PT, OT, caring for my plants, watching the fish and reading my cooking magazines. I am now back in charge of the kids, house cleaning, laundry, etc... I forget how much work it is. My garden has taken a lot to keep up with with all this humidity, instead of pulling weeds, I'm pulling mushrooms. I made my own mildew/pest repellent spray with baking soda, dish detergent and water, that seems to be working good. http://tlc.howstuffworks.com/home/homemade-organic-gardening-sprays.htm. Two plants that are thriving in this weather are my orchid and avocado tree.
I also took my first few "non-essential" trips out. The family and I went to BJs, we went to the beach here in our community and I visited some family. It finally felt great to be out. I guess it helps now, the fact I look completely normal. No one knows whats going on inside me or how I feel.
Well, you are all up to date. Hope to see you out and about as I feel better.
Friday, July 12, 2013
Insight into sight
My great news this week was that my optho-neurology appointment got moved up from August 13th to yesterday! I was supposed to see them one week after I got discharged...it has already been three! Anyway, at my last visit with my MS doctor, she told me I had little chance of regaining sight in my right eye. So, Ive been anxious for this appointment. Since this is a more informative blog as well, I should introduce you to my doctors: I saw Dr Lesser. He is, as I found out, one of the only Neurology Opthamologists around. So, he is quite the popular guy, but you would never know it. He treated me like I was his most I important patient (even giving me his cell phone number and email address at the end of the appointment, in case I had an emergency and his office couldn't contact him). The appointment was 4 hours long. It took me quite a long time to convince them I had NO sight in my right eye or no feeling in the right side of my face. When it finally sunk in, the doc asked my permission to use my 'abnormality' as a training session for his new Techs. Im all for training to make better Techs and Docs, especially if the organs are within my body and they are not like vultures outside the door of the ER waiting to collect(NO, Im not an organ donor).
I have a lesion on my optic nerve, which is causing my blindness. The docs at Yale gave me IV steroids to hopefully shrink this lesion and regain my ability to see. No such luck. I also have a lesion on my brain that effects my facial nerves on my right side. One nerve stretches up across my forhead, the other across right under my jawbone and then one towards my chin. They also affect bititng, chewing and swallowing. The group of them is called the 'Fifth Nerve'. Well, the numbness stops at midline of my face. The doctor rolled up a tissue and wiped it along my forehead from my right to left and asked where I regained normal sensation. I stopped him at the midline of my forehead. He noted that to the techs. Then he did the same test across the middle of my face. This time I stopped him on the far side of my nose. He noted this important fact to the techs that it was NOT at the midline this time and that I was not faking this numbness. The fifth nerve actually stops at midline everywhere but at your nose. It covers your whole nose. Interesting!
Ok- so Im not faking my highly annoying facial numbness and problems chewing, talking and swallowing. Good. Moving on... Another three hours of assorted eye tests. At the end, the doctor asked if I wanted to call my mom in (who drove me) for the diagnosis. I told him, first, Im 38. I don't really need her to be there. Second, she has my 1 1/2 year old daughter with her whom which really isn't interested in hearing a long diagnosis. "So, go ahead". He does believe that the vision loss is related to my MS and it is atypical for vision deficits related to MS to be permanent. However, my loss is profound and has already gone on for 4 weeks. My optic nerve is also already beginning to pale. So, even if I were to regain some vision, it would never be as it was. But he told me not to give up hope yet that I wont regain something. That being said, there are a few other optic nerve diseases(that he does not think I have but wants to rule out) that mimic the ones of MS. These diseases will in fact spread to the other eye and leave me completely blind. So, consensus? I am either going to regain some sight or lose it completely, but I should never waste my money on a 3D movie again because I will never see 3D. This, I don't mind so much. The only 3D experience I was ever fascinated with was that at Disney with all the other sensory experiences. That was cool and one not to be missed if going to Disney. Was it fantasia?????
Ive just over the past few days been making great strides here at home. Ive got to get out and watch the kids play in the sand at the beach twice now and I even put them all to sleep by myself last night. What a happy Mom I was, snuggling to sleep my babies. Bedtime can be frustrating, but there's nothing like not being able to participate in it for three months to make it seem glorious. As much as I would like to be able to snuggle them in bed for the rest of their lives, there comes a time when your own space is oh so valuable. SO, today is the great bedroom makeover. How to create individual space in one large room for three children. Im pretty creative, but very limited by physical ability now... Will post results! Once we can actually buy our house and add on some more bedrooms, things will be much easier. Today, besides The Great Bedroom Makeover, I have OT and we clean our new fish tank for the first time. Hopefully all goes well. So far we have not managed to lose one.
I'm paving my way through my Service Dog application. I have filled out my preliminary application and have started my secondary. I got my Doctor to sign off, two personal letters of reference. Now I need my Professional letter of reference, Bio, Picture and Medical releases. If I meet the requirements, I need to go in for a personal interview. If I make it past that, I owe them $8500 and a year wait. Yes, that's $8500. They mention partial scholarships and they will also help me with a fundraising campaign. Its exciting! http://ecad1.org/default.htm
This week I am due back at my MS Specialist, Dr Mary Bailey, another amazing doctor I get the privilege of working with. So, I will blog you then..
I have a lesion on my optic nerve, which is causing my blindness. The docs at Yale gave me IV steroids to hopefully shrink this lesion and regain my ability to see. No such luck. I also have a lesion on my brain that effects my facial nerves on my right side. One nerve stretches up across my forhead, the other across right under my jawbone and then one towards my chin. They also affect bititng, chewing and swallowing. The group of them is called the 'Fifth Nerve'. Well, the numbness stops at midline of my face. The doctor rolled up a tissue and wiped it along my forehead from my right to left and asked where I regained normal sensation. I stopped him at the midline of my forehead. He noted that to the techs. Then he did the same test across the middle of my face. This time I stopped him on the far side of my nose. He noted this important fact to the techs that it was NOT at the midline this time and that I was not faking this numbness. The fifth nerve actually stops at midline everywhere but at your nose. It covers your whole nose. Interesting!
Ok- so Im not faking my highly annoying facial numbness and problems chewing, talking and swallowing. Good. Moving on... Another three hours of assorted eye tests. At the end, the doctor asked if I wanted to call my mom in (who drove me) for the diagnosis. I told him, first, Im 38. I don't really need her to be there. Second, she has my 1 1/2 year old daughter with her whom which really isn't interested in hearing a long diagnosis. "So, go ahead". He does believe that the vision loss is related to my MS and it is atypical for vision deficits related to MS to be permanent. However, my loss is profound and has already gone on for 4 weeks. My optic nerve is also already beginning to pale. So, even if I were to regain some vision, it would never be as it was. But he told me not to give up hope yet that I wont regain something. That being said, there are a few other optic nerve diseases(that he does not think I have but wants to rule out) that mimic the ones of MS. These diseases will in fact spread to the other eye and leave me completely blind. So, consensus? I am either going to regain some sight or lose it completely, but I should never waste my money on a 3D movie again because I will never see 3D. This, I don't mind so much. The only 3D experience I was ever fascinated with was that at Disney with all the other sensory experiences. That was cool and one not to be missed if going to Disney. Was it fantasia?????
Ive just over the past few days been making great strides here at home. Ive got to get out and watch the kids play in the sand at the beach twice now and I even put them all to sleep by myself last night. What a happy Mom I was, snuggling to sleep my babies. Bedtime can be frustrating, but there's nothing like not being able to participate in it for three months to make it seem glorious. As much as I would like to be able to snuggle them in bed for the rest of their lives, there comes a time when your own space is oh so valuable. SO, today is the great bedroom makeover. How to create individual space in one large room for three children. Im pretty creative, but very limited by physical ability now... Will post results! Once we can actually buy our house and add on some more bedrooms, things will be much easier. Today, besides The Great Bedroom Makeover, I have OT and we clean our new fish tank for the first time. Hopefully all goes well. So far we have not managed to lose one.
I'm paving my way through my Service Dog application. I have filled out my preliminary application and have started my secondary. I got my Doctor to sign off, two personal letters of reference. Now I need my Professional letter of reference, Bio, Picture and Medical releases. If I meet the requirements, I need to go in for a personal interview. If I make it past that, I owe them $8500 and a year wait. Yes, that's $8500. They mention partial scholarships and they will also help me with a fundraising campaign. Its exciting! http://ecad1.org/default.htm
This week I am due back at my MS Specialist, Dr Mary Bailey, another amazing doctor I get the privilege of working with. So, I will blog you then..
Monday, July 8, 2013
Learning to live with a disability
This is what my doctor says, "Don't expect anything for six months". WHAT? SIX MONTHS? Yet, she can say I most likely won't regain vision in my right eye. And when I call on the phone to ask the nurse a question and she asks if I am still having dizziness and balance issues, she replies "Oh, Im so sorry" when I respond "yes". So, where is six months there? I am beginning to realize, 3 months from my first onset, that this is as good as its going to get. Yes, I can walk around, I can take care of myself, make dinner, take partial care of my children, etc... and I appear normal. Everyone says I look great. Inside, I am not. I am weak, uncoordinated(you should see me at night ricocheting off the walls trying to get to the bathroom), fatigue easy, I cannot see out of my right eye, the entire right side of my face is numb including my tongue. When I raise my voice or talk passionately or at length about something my tongue just about gets paralyzed and I have to speak slow and be sure to pronounciate clearly. I am realizing, I have a disability. I have my handicapped pass for my car. Ive filled out my disability forms. I think that's the hardest part, coming to grips that you will never be 100%. There are things I will not be able to do. Things I have to cross off my bucket list.
Another challenging part is to remain positive, yet realistic. The positivity is for every one else. God forbid they see you in despair or hear words like 'never' or 'cant'. They would have such pity on you, they would be heartbroken, they wouldn't be able to sleep at night. So, you smile and nod and say all the happy words. I do admit I have an advantage. As my blog is named, I have a beautiful life. I live in a wonderful house, neighborhood, community. I have a wonderful church and friends and family. I have incredible parents, a loving husband and 3 amazing children. I don't owe anything to anyone (except medical bills and a few payments on my old mini van in the driveway). Like Ive said before, other than future financial concerns, my life is so full, so blessed, so beautiful that I am OK with this part being taken. I definitely know a lot of people, handi-capped and not, that are not so fortunate. The realistic part is for me, to prevent me from being overly positive.
The next obstacle to realization of disability is what assistive aids you need. Luckily, at the present time, I only need a wheelchair here and there. I use it around the house mostly, when I'm tired or when I want to conserve my energy. I paddle around in it back and forth, usually with a small happy traveler on my lap! It comes in handy when I have to lean down to pick something up off the floor, because my balance isn't so good doing that while standing. So, at home I am comfortable with it. Going out is another story. We tote it around in the car and I feel like we are flying with one of those aerial banners that says "DISABLED".
When I have to use it, I'm happiest with a child on my lap. It makes me feel useful. I'm learning that even handicapped accessible places aren't so easily accessible. The cracks in the pavement or spaces between pavement and walkways suck in my front wheels and leave me stuck until my "pusher" pulls me out and turns me around backwards so the back wheels go first. Then they continue to push me, like an infant, to my destination. I haven't even mentioned the looks. Most people with wheel chairs, or assistive devices LOOK disabled, but as I said, I look fine. So, people take extra long to look. Do they think I am lazy? That I want to be pushed around?
Ive got to give the other handicapped people out there a whole ton of credit. It takes a lot. My comfort place is home. I love it here. I am at ease. Friends ask all the time if I want to get out, go to the movies, to church, to their party???? So I can make a fool of myself by stumbling over uneven ground? Maneuver opening a door and going down a step? Dealing with the heat or cold? Have someone approach me on my right side and try to talk to me when I cant even see then or know who it is? Then, additionally, comes the kids. How am I supposed to watch them away from home and make sure they are safe? I surely cant run after them. So, If you wonder if I want to escape from my house, I don't. If you really want to see how I am or spend some time with me, stop by for a visit. I'm just about always here and love short visits from friends in between or after my therapy sessions.
Most of all I love watching my children play here at home, get lost in my cooking magazines, for my plants and, well, keep up on my blog. Soon, hopefully, it will be easier as I will have an ipad to help me out, as the keyboard still is not quite user friendly to me. Im very excited about my new purchase and continually checking the tracking info online to get the latest stats on delivery.
I have made some progress out in the community and though I am not playing the role I would have liked to live up to with the Goshen Summer Market, I am attending and selling my homemade goatsmilk soaps.
Another challenging part is to remain positive, yet realistic. The positivity is for every one else. God forbid they see you in despair or hear words like 'never' or 'cant'. They would have such pity on you, they would be heartbroken, they wouldn't be able to sleep at night. So, you smile and nod and say all the happy words. I do admit I have an advantage. As my blog is named, I have a beautiful life. I live in a wonderful house, neighborhood, community. I have a wonderful church and friends and family. I have incredible parents, a loving husband and 3 amazing children. I don't owe anything to anyone (except medical bills and a few payments on my old mini van in the driveway). Like Ive said before, other than future financial concerns, my life is so full, so blessed, so beautiful that I am OK with this part being taken. I definitely know a lot of people, handi-capped and not, that are not so fortunate. The realistic part is for me, to prevent me from being overly positive.
The next obstacle to realization of disability is what assistive aids you need. Luckily, at the present time, I only need a wheelchair here and there. I use it around the house mostly, when I'm tired or when I want to conserve my energy. I paddle around in it back and forth, usually with a small happy traveler on my lap! It comes in handy when I have to lean down to pick something up off the floor, because my balance isn't so good doing that while standing. So, at home I am comfortable with it. Going out is another story. We tote it around in the car and I feel like we are flying with one of those aerial banners that says "DISABLED".
When I have to use it, I'm happiest with a child on my lap. It makes me feel useful. I'm learning that even handicapped accessible places aren't so easily accessible. The cracks in the pavement or spaces between pavement and walkways suck in my front wheels and leave me stuck until my "pusher" pulls me out and turns me around backwards so the back wheels go first. Then they continue to push me, like an infant, to my destination. I haven't even mentioned the looks. Most people with wheel chairs, or assistive devices LOOK disabled, but as I said, I look fine. So, people take extra long to look. Do they think I am lazy? That I want to be pushed around?
Ive got to give the other handicapped people out there a whole ton of credit. It takes a lot. My comfort place is home. I love it here. I am at ease. Friends ask all the time if I want to get out, go to the movies, to church, to their party???? So I can make a fool of myself by stumbling over uneven ground? Maneuver opening a door and going down a step? Dealing with the heat or cold? Have someone approach me on my right side and try to talk to me when I cant even see then or know who it is? Then, additionally, comes the kids. How am I supposed to watch them away from home and make sure they are safe? I surely cant run after them. So, If you wonder if I want to escape from my house, I don't. If you really want to see how I am or spend some time with me, stop by for a visit. I'm just about always here and love short visits from friends in between or after my therapy sessions.
Most of all I love watching my children play here at home, get lost in my cooking magazines, for my plants and, well, keep up on my blog. Soon, hopefully, it will be easier as I will have an ipad to help me out, as the keyboard still is not quite user friendly to me. Im very excited about my new purchase and continually checking the tracking info online to get the latest stats on delivery.
I have made some progress out in the community and though I am not playing the role I would have liked to live up to with the Goshen Summer Market, I am attending and selling my homemade goatsmilk soaps.
I also have made it down to the lake/beach here in our neighborhood to watch the kids enjoy the beach.
Despite all our accomplishments this week, we did have a tremendous hole put in our lives. We had to make the ever so difficult decision to say good bye to our Annie. She came to us in need of love and support and ended up giving that to us. I, as I am sure Al does too, miss her more than I thought I would.
It will never take her place, but may have opened a new door for us. Al and I have always wanted to train a service dog. Well, a service dog may be just what I could use. Their dogs are taught to retrieve items, open doors, activate light switches, pull wheelchairs, balance, brace, and perform many other highly specialized tasks through the ECADemy© training program. This place I found, and really like, East Coast Assistance Dogs has a waiting list of a year and a half. By then, I will either really need it...or not!!
After all, that is beyond my six month mark!!
I
Sunday, June 30, 2013
17. Settling In
I did it. I got my first Tysabri infusion. I might have well been getting a leathal injection, for I already feel the white matter in my brain turning to mush. I feel memory loss and muscle cramping and weakness ... OK, maybe it is just psychological. Maybe I am OK and this drug is the best choice, but I am still hesitant. The process went well. The infusion took an hour and then they monitored me for an hour. Hopefully this will put and new symptoms at bay and let me recover from the old stuff.
I still have both Physical Therapy and Occupational Therapy twice a week. I work on my balance, making my muscles stronger and basic walking with my Physical Therapist. With my Occupational Therapist, I work on keeping symmetry of my facial muscles, eye tracking and hand coordination. Things that used to come easy are now quite a challenge. The OT put out a pattern of pennies for me to flip over , and timed me doing it. It almost brought me to a sweat. Hopefully these things will get easier. My two biggest challenges right now are my balance(or lack there of) and the numbness in my face. Im hoping that since the facial thing is just nerves, that they will repair. Though, it has been a month already since I lost feeling. I wonder. I still get pins and needles in my hands and feet but that doesn't entirely bother me. I can live with it. I did finally just wean off the steroids the day before yesterday(after approx 5 rounds in 2 months). So, hopefully I will notice some good changes there.
Meanwhile, I have been trying to make my life easier and more comfortable at home. I buckled down and got a patio set so I can sit in the shade comfortably outside and watch the kids, working on putting in a doggie ramp from the deck so I can let the dog out myself.(its one thing needing so much help, but to have to page someone because the dog needs to go out is just a little much)....and, of course, our dog is a runner so you cant just let her out the front door and expect her to come back. She will run and run until she finds something dead to roll in, then go to the nearest house to call for a ride home. Lovely, I know.
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I still have both Physical Therapy and Occupational Therapy twice a week. I work on my balance, making my muscles stronger and basic walking with my Physical Therapist. With my Occupational Therapist, I work on keeping symmetry of my facial muscles, eye tracking and hand coordination. Things that used to come easy are now quite a challenge. The OT put out a pattern of pennies for me to flip over , and timed me doing it. It almost brought me to a sweat. Hopefully these things will get easier. My two biggest challenges right now are my balance(or lack there of) and the numbness in my face. Im hoping that since the facial thing is just nerves, that they will repair. Though, it has been a month already since I lost feeling. I wonder. I still get pins and needles in my hands and feet but that doesn't entirely bother me. I can live with it. I did finally just wean off the steroids the day before yesterday(after approx 5 rounds in 2 months). So, hopefully I will notice some good changes there.
Meanwhile, I have been trying to make my life easier and more comfortable at home. I buckled down and got a patio set so I can sit in the shade comfortably outside and watch the kids, working on putting in a doggie ramp from the deck so I can let the dog out myself.(its one thing needing so much help, but to have to page someone because the dog needs to go out is just a little much)....and, of course, our dog is a runner so you cant just let her out the front door and expect her to come back. She will run and run until she finds something dead to roll in, then go to the nearest house to call for a ride home. Lovely, I know.
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We, as a family, are adjusting to cooking our own meals. Our friends, church and community are so gracious that we haven't had to prep and cook a meal in almost 2 months. Its a rough transition though. Now, at 5pm we are all looking at each other wondering what we are going to eat. I have to get my butt in gear and do some meal planning.
My days, though I don't leave home, with the exception of doctors appointments, fly by. I help a bit watching the kids, a bit in the kitchen, care for my flowers and 'garden', PT, OT, watch my beautiful new fish and, most importantly rest. I have been tolerating more visiting. So, if you are so inclined, give a call and stop by for a visit.
Monday, June 24, 2013
16. Down the Hatch
So, in order to write this blog I must eat my words and those of you that know me well know how difficult that is. Here it goes:
I saw my MS Specialist last week. The visit, in my opinion was not positive. She evaluated my progress, asked me questions, blah, blah, blah...Then asked me if I considered her recommendation for treatment. I told her, as best I could, my feelings on the risk of Tysabri. She looked at me and told me how many people she sees with MS and to all different degrees, but I am just unlucky. Unlucky as to where it has hit me and to what extent. Wait a second, Im never unlucky. This was just supposed to hit me mildly, resolve completely and leave me to go on to be the Poster Child of MS. I was supposed to be able to treat this all naturally, run marathons and return to supermom status asap. She used the words 'worried' and 'scared' and 'quality of life'....things you don't ever imagine hearing from your doctor. She assessed my vision and is also worried that I will not regain sight in my right eye. She excused herself to consult with another colleague and when she came back she let me know they both would support my decision to not use Tysabri, but disagree. Her last attempt at changing my mind was another MRI. With those results in hand, we could re-discuss tomorrow.
So, We made the best of the day and spent what I had available on my new flowers and veggies. I love them, cant get enough, filled a cart and a flat bed with all kinds of gardening goodies. I perched myself on the back of the shopping cart and walked until I couldn't walk anymore(really only a matter of a half hour, but I did it). The next day, with the help of friends and family we began transforming my back deck into my oasis. I figure if that's as far as I can get this summer, I want it to be beautiful. Besides, gardening is great therapy!
I also am able to dress my kids, do their hair, put them to sleep at night and keep an eye on them while they are playing quietly here at home. Baths, feeding anything to do with running after them are still things to conquer. If all else fails, wheelchair rides on my lap around the house seem to settle them. My oldest loves this new mom, for the most part. She loves me home and to have me actually still do be able to do my nails and watch movies and such. She is a huge help with the kids and around the house too. I feel its finally the boost she needs to teach her responsibility and concern for others. Maybe not quite the way I thought she would learn... But that's life, not quite what you expect!!
Monday, June 17, 2013
15. Tysabryi on the brain
Well, the doctors told me not to expect any improvement for my first week home, just ups and downs. My body is acclimating to being home rather than in a hospital bed 24/7, I'm on a step down program of oral steroids after all that IV stuff, and on way less meds. Seeing all that, things have been fairly steady. I have my good and bad days as far as walking. Sometimes weaker than others and sometimes more off balance than others. and I never know when it will be. So, I have gotten accustom to getting around the house in the wheelchair mostly. Besides, I think it makes everyone feel more comfortable... and my 1 1/2yr old loves travelling around with me.
I, of course, have wanted to take on the world, especially when Im laying down. Ive had 2 weeks of HGTV and cooking magazines under my skin in the hospital. So, Im super motivated...until I sit up!!! I have amazing plans of planting garden boxes right out on my deck where I can get to them easily to water and enjoy. Tomatoes and peppers and cucumbers galore. Ive already got my pressure cooker and canning jars ready! Also have a line up of garden pots and plants on my wish list to transform my view of the deck into a living wonderland of sprays and blooms. So far, I managed to start 2 small pots of strawberries before I crawled back to the couch.
My days inside will soon be lightened by our own aquarium,, which a friend generously offered to donate and set up.. We cant wait. It was one of our fondest and fun memories at the hospital.
I, of course, have wanted to take on the world, especially when Im laying down. Ive had 2 weeks of HGTV and cooking magazines under my skin in the hospital. So, Im super motivated...until I sit up!!! I have amazing plans of planting garden boxes right out on my deck where I can get to them easily to water and enjoy. Tomatoes and peppers and cucumbers galore. Ive already got my pressure cooker and canning jars ready! Also have a line up of garden pots and plants on my wish list to transform my view of the deck into a living wonderland of sprays and blooms. So far, I managed to start 2 small pots of strawberries before I crawled back to the couch.
My days inside will soon be lightened by our own aquarium,, which a friend generously offered to donate and set up.. We cant wait. It was one of our fondest and fun memories at the hospital.
When we moved into our new house, we opted to ditch the TV, which has been great- haven't missed it. But, when stranded on the couch for hours on end, distraction of fish will be nice.
I have spent a lot of time this week setting up my new web site (www.mybeautifullifewithms.com). Im hoping it will eventually host my blog and also serve as a resource for all those affected by MS, children to adults. My hope is when I fine tune the site, I can eventually make an income off it.
My next appointment is Wednesday, first thing in the am, with my MS Specialist. The goal is to start on an MS modifying agent...you have heard me speak about this before if you read my blog, but now its countdown time. The drug of choice, that the doctor recommends highly, is Tysabri. Its a great drug, so all the doctors say, and it will give me the most chance at regaining a totally normal lifestyle. They say it might even halt MS in its tracks and be 80% effective at preventing other attacks. It is given by a once a month IV Infusion at a center especially trained and licensed. Sounds great......except if it only didn't come with the "black box" warning label that theres a rare chance it will increase the risk of PML. Whats PML? Great question. It stands for Progressive multifocal leukoencephalopathy, a rare brain infection that USUALLY causes death, but otherwise renders you a vegetable. This drug came onto the market, I believe, in 2006 and was pulled off after 347 confirmed cases of PML. What they finally found, though, is a link to PML and the JC Virus. If you don't have the JCV, you cannot(so they say) get PML. So, whats the JC Virus? Another great question.... Nope, it not some rare virus you may possibly contract from a 5 toed ant on the slopes of the Western Nile. It is a strain of the common cold. We have 3 kids and a household of 7, we not only have every, we probably create new strains of the common cold. The JC Virus is so common, it effects 70-90% of the general population. So, just because I haven't been exposed to JCV yet, doesn't mean I wont. What a decision. Ya know, looking back, how many sleepless nights I spent dwelling on what I thought were BIG decisions... Like who to date, or if to send my kid to camp,, or if to buy that new car. The next time you have to make what you think is a huge decision, think about this one: The chance at living a normal life or your brain possibly turning to mush(with NO cure BTW). I think maybe if I was older, or didn't have kids, or...or... The doctor keeps telling me what a small risk this is and how its such a front line drug..... I still have two nights to lose sleep over it I guess. and I better start now, its getting late..
Saturday, June 15, 2013
14. Just a quick update
Its saturday. My first weekend home in what feels like forever. Its a beautiful day already out there. The sun is up, birds are chirping, The Farmers market will be gearing up, as will the stampede. I will be here on my couch.
I suppose I have made progress this week. At least everyone else feels i have. I can get to the bathroom on my own. And I can also get my own drinks. So, I guess that's a good step. Its just not good enough for me.
Yesterday, I actually took my first bath in like a month, without a shower chair or without being assisted. I thought it would be wonderful. The water just didn't feel right on my skin. Its like I had a bath fizzy in the tub.. but I didn't. I thought shaving my legs would go great and I wouldnt look like a mangy Fox that just ran through a pricker bush, but my hands just werent steady enough. I thought I'd be able to style my hair by holding the hairdryer in one hand and a brush in the other. But that didn't go so well either. I thought when I looked in the mirror I would havd less grey hair than I actually did.
I sat at the dinner table with everyone and put on a smile and I think they actually thought I was part of the group. But I didn't feel like it. I could barely keep conversation. I had to concentrate on chewing very slowly to make sure I swallow it correctly. I could only see everything to my left,And I was nervous and hot tbe whole time.
I would like this blog post to be more inspirational and up beat....
Tomorrow is another day...
Sunday, June 9, 2013
13. Homebound Again??
I have mixed emotions about my departure. I believe I originally checked into Newport Hospital on April 14th. Since that i have kind of been hospital hopping. It has been a long time and I have missed a lot. I have missed being able to wean my last baby at leisure and watch her thrive, I have missed some major potty training accomplishments with my son. I missed my daughter's spelling bee and school carnival. Missed most of the apple blossoms blooming on the tree in the back yard and the Lilly's in the front. I missed opening day at the pool and the memorial day parade. I even missed being voted in as PTO president (but they graciously held my spot :).
I've missed a lot, but this is my SAFE spot, my spot of healing. The staff are so nice here. Mainly because they have to be, but also because they love their jobs. Even if they have to wake me at 4am for blood draws or vital signs its with a please and a thank you and "can I get you anything"? Theres also the comfort of the "team" checking in on me daily to monitor my progress and answer any new questions. Then theres the dreaded ultra happy physical therapy team I hear seeking me out,, with their super high energy and big smiles coming to make me work. Funny, years ago I would run my cross country and stadium courses a half dozen times before I actually rode them, just to make sure I got the pattern down. Now my one token walk around the nurse's stand with a physical therapist by my side to keep me from listing right and Al following with the wheel chair in case I need a break warrants a big "Whoo Hoo", but it still feels good. There are my 3 happy places im allowed to go. One is to the fishtank at the end of the hall. It has a super creepy eel, a fish with THE whitest mouth you have ever seen and other beautiful soothing tropical fish. Im also allowed out to the healing garden. Its also a short walk and one floor down. Outside, ln the 7th floor roooftop of the cancer center, they put ina healing garden. It has flowering shrubs and trees, pathways, benches, architectual elements, a babbling brook and even a reflection pool area. Our last fun space to visit, which im not sure im supposed to even go that far but no one has stopped us, is the lookout over the lifestar pad from the 15th floor. We actually have the perfecct room on the 8th whereas we can see them come in and land right on our roof (im sure by now you've seen at least one of our fb posts).
I think the thing I will miss most, that im actually bringing home with me but have to set free once home, is my husband. He has put his life 100% on hold to make sure I can hold on to whats left of mine. He has been here the whole time, not even making one trip home. He sleeps on a cot next to my bed. If I have a lazy day, he just hangs in and sits with me contently for hours. He leaves my side for minutes at a time, usually to get me 'must haves' like a journal, and the perfect pen to inspire me to write, and the not-to-light not-too-dark colour of nail polish, or the pizza and salad at 9pm after all the cafeterias close. He did great on all of those, btw. He also walks me to the bathroom all hours of the night, showers me, dresses me, feeds me (making sure all the food I can't feel on the right side of my face is cleaned up). He sits through all my procedures, even somehow being let into the MRI scan room to rub my toes and keep my restless legs at bay during the whole multi hour scan. I honestly dont know another person in the world that would, or should give up so much for someone else. So, when anyone asks where all my strength comes from, im probably falsely answering. My hope is to get home and progressively better so he doesnt have to watch me slide down this sink whole repeatedly.
Im trying not to get my hopes up too high. We still have to hope for normal white cell counts and normal fibrinogen levels, and the lab schedule, and smooth recovery from my last Plasma Transfer. So, still a lot pending before I can get discharged and a long sleepness night ahead of me. A good night for all my meds, pull the clock from the wall and put the phone under the bed .
And.......prayers!
I've missed a lot, but this is my SAFE spot, my spot of healing. The staff are so nice here. Mainly because they have to be, but also because they love their jobs. Even if they have to wake me at 4am for blood draws or vital signs its with a please and a thank you and "can I get you anything"? Theres also the comfort of the "team" checking in on me daily to monitor my progress and answer any new questions. Then theres the dreaded ultra happy physical therapy team I hear seeking me out,, with their super high energy and big smiles coming to make me work. Funny, years ago I would run my cross country and stadium courses a half dozen times before I actually rode them, just to make sure I got the pattern down. Now my one token walk around the nurse's stand with a physical therapist by my side to keep me from listing right and Al following with the wheel chair in case I need a break warrants a big "Whoo Hoo", but it still feels good. There are my 3 happy places im allowed to go. One is to the fishtank at the end of the hall. It has a super creepy eel, a fish with THE whitest mouth you have ever seen and other beautiful soothing tropical fish. Im also allowed out to the healing garden. Its also a short walk and one floor down. Outside, ln the 7th floor roooftop of the cancer center, they put ina healing garden. It has flowering shrubs and trees, pathways, benches, architectual elements, a babbling brook and even a reflection pool area. Our last fun space to visit, which im not sure im supposed to even go that far but no one has stopped us, is the lookout over the lifestar pad from the 15th floor. We actually have the perfecct room on the 8th whereas we can see them come in and land right on our roof (im sure by now you've seen at least one of our fb posts).
I think the thing I will miss most, that im actually bringing home with me but have to set free once home, is my husband. He has put his life 100% on hold to make sure I can hold on to whats left of mine. He has been here the whole time, not even making one trip home. He sleeps on a cot next to my bed. If I have a lazy day, he just hangs in and sits with me contently for hours. He leaves my side for minutes at a time, usually to get me 'must haves' like a journal, and the perfect pen to inspire me to write, and the not-to-light not-too-dark colour of nail polish, or the pizza and salad at 9pm after all the cafeterias close. He did great on all of those, btw. He also walks me to the bathroom all hours of the night, showers me, dresses me, feeds me (making sure all the food I can't feel on the right side of my face is cleaned up). He sits through all my procedures, even somehow being let into the MRI scan room to rub my toes and keep my restless legs at bay during the whole multi hour scan. I honestly dont know another person in the world that would, or should give up so much for someone else. So, when anyone asks where all my strength comes from, im probably falsely answering. My hope is to get home and progressively better so he doesnt have to watch me slide down this sink whole repeatedly.
Im trying not to get my hopes up too high. We still have to hope for normal white cell counts and normal fibrinogen levels, and the lab schedule, and smooth recovery from my last Plasma Transfer. So, still a lot pending before I can get discharged and a long sleepness night ahead of me. A good night for all my meds, pull the clock from the wall and put the phone under the bed .
And.......prayers!
Saturday, June 8, 2013
12. And Another
Wow, for laying here in a hospital bed unable to walk or move around much , the days really fly by. There are vital signs and nurses checks and medications and Specialist visits and room cleaning and physical therapy and treatments as such. It seems sometimes we barely get left alone for 15 minutes.
So, I have a lot to catch up on since my last blog. As far as the eyes, I have not gotten my vision back in my right eye. But the structure of the eye itself looks fine. The latest MRI showed a lesion on the back of my optic nerve which is what's causing the problem. The neurologist sees no permanent damage in my future. So, its just a waiting game. And like I mentioned. .. Still happy to have that one eye with vision. One of those amazing things I ponder as my eyes are pushing those clock dials around at night..... how god was smart enough to make two of , most needed organs(for lack of better words).
The rest of my MRI came back clean, meaning no new lesions. So what I'm dealing with is just remnants of "old" lesions. It means dizziness lack of coordination, headaches, numbness but other than that nothing new. Lol.
The doctors decided to extend out my IV Solumedrol, steroids. So I still have them every 24 hours. I will deal with the results of coming off that later. That's where all of you come into play... to deal with me. I still have my plasma transfer treatments every other day. Although, I had a setback this week. My fibrinogen http://en.m.wikipedia.org/wiki/Fibrinogen level dropped below normal which can affect blood clotting so we had to wait a day for it to recover to a safe level before plasma transfer. That added three days to our stay, since they dont run that procedure here on the weekends and besides, gives my poor veins a chance to recover.
I got a great treat on Friday when my daughter was pulled from school by our pastor to come and pay me a visit. My little ones also came up today which boosted my spirits immensely. This weekend we took me off the IV fluids to see how I do on my own. It will be the final test you before going home.
We also had another difficult decision to make. The doctors decided they wanted to start me on an MS modification drug sooner rather than later. The drug that shows most potential of haulting my symptoms and its tracks is a very aggressive one on the market but very controversial as well. Its called Tysabri http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/natalizumab/index.aspx and can only be given through in the fusion center associated with Yale or medical clinic around the area. It sounded good at first in that I would be able to maintain a normal lifestyle, yet also comes with the increased chance of a rare form of brain leukemia, which is irreversible. Also, the duration I would be able to be on the drug is 2 years. So for that kind of side effects for a two-year drug it just doesn't seem worth it. I made the decision in the middle of the night last night not to take that road. So we are looking into other options. There is a drug used over in Europe by the name of BG 12 that has been used for over 10 years for different applications but its coming to light with the help of treatments for MS.
Other good news, for anyone but my floormates here, is I got a guitar to borrow. Life-long dream of mine.. To sing and play the guitar. Well, I can't do either to save my life, but looking back, my kids will remember how extremely talented I was :)
10. The Fifth Element
A pack of 6 dogs to go to the grocery store for a gallon of milk... grrr..
So I buy a big fancy tablet to have voice prediction so that I can speak so into my computer without using my somewhat paralyzed hands. Then, of course, my tongue itself becomes paralyzed and the sentences come out sounding more like the first.
Thank goodness for my wonderful husband. By now you know how wonderful he is from what i say. He does not read my blog. I don't know why, I have had asked him. Maybe he will someday when the kids ask him to or when we are on a beach somewhere when my book pays for our trip but for now just him typing for me makes everything ok in my world. We have been through a lot in the past week through many hospitals and many ambulance rides, it's landed us at Yale New Haven Hospital. I feel like we have checked into The Fifth Element, you know, that 1997 Bruce Willis movie with an orb of higher intelligence. Its really amazing.
I can tell you that COW here has a totally differnt meaning a COW back in Goshen. I'm use to a cow being well, a cow. But here, its a computer on wheels and every nurse has one. You just ring their personal phone number ad they zip up on their COW to help you with any need. The food service is more like room service as you can order anytime you want anything that you want. Its like a 5 star hotel. As far as the dctors go, I no longer have a doctor, I have a team. They transcend down around my bed like a basketball team going over the next strategy, all in their white lab coats. I know some of them are students and lab coats are just to maintain continuity of the team however they each have their own name on them, so they must have done something to get them. Never mind, they take extraordinary care of me.
I am currently undergoing a process called plasmapheresis http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/plasmapheresis-plasma-exchange/index.aspx which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. Its a crazy scientific process. But its supposed to make me feel much better sooner. I have only had two out of five and I can already sit up for first time in a week and walk short distances with assistance. I could also sit up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.
I still have not seen my family on my children in sis which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. As a crazy scientific process. But its supposed to make me feel much better sooner. I have only had to get to 5 at can I already set up for first time in a week and walk short distances with assistance. I could also set up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.I still have not seen my family on my children in a week or more but I know my recovery will be much faster with that. I told them I'm not coming home until I can take care of them. I have to leave that to family and community now. right now it's just a point of waiting for my next few treatments scheduled on Monday, Wednesday, and Friday. They tried to give my veins a few days in advance to bounce back. Right now i am like a bruised pincushion , my face is half paralyzed , and I can sit up for short periods of time.
So I buy a big fancy tablet to have voice prediction so that I can speak so into my computer without using my somewhat paralyzed hands. Then, of course, my tongue itself becomes paralyzed and the sentences come out sounding more like the first.
Thank goodness for my wonderful husband. By now you know how wonderful he is from what i say. He does not read my blog. I don't know why, I have had asked him. Maybe he will someday when the kids ask him to or when we are on a beach somewhere when my book pays for our trip but for now just him typing for me makes everything ok in my world. We have been through a lot in the past week through many hospitals and many ambulance rides, it's landed us at Yale New Haven Hospital. I feel like we have checked into The Fifth Element, you know, that 1997 Bruce Willis movie with an orb of higher intelligence. Its really amazing.
I can tell you that COW here has a totally differnt meaning a COW back in Goshen. I'm use to a cow being well, a cow. But here, its a computer on wheels and every nurse has one. You just ring their personal phone number ad they zip up on their COW to help you with any need. The food service is more like room service as you can order anytime you want anything that you want. Its like a 5 star hotel. As far as the dctors go, I no longer have a doctor, I have a team. They transcend down around my bed like a basketball team going over the next strategy, all in their white lab coats. I know some of them are students and lab coats are just to maintain continuity of the team however they each have their own name on them, so they must have done something to get them. Never mind, they take extraordinary care of me.
I am currently undergoing a process called plasmapheresis http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/plasmapheresis-plasma-exchange/index.aspx which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. Its a crazy scientific process. But its supposed to make me feel much better sooner. I have only had two out of five and I can already sit up for first time in a week and walk short distances with assistance. I could also sit up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.
I still have not seen my family on my children in sis which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. As a crazy scientific process. But its supposed to make me feel much better sooner. I have only had to get to 5 at can I already set up for first time in a week and walk short distances with assistance. I could also set up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.I still have not seen my family on my children in a week or more but I know my recovery will be much faster with that. I told them I'm not coming home until I can take care of them. I have to leave that to family and community now. right now it's just a point of waiting for my next few treatments scheduled on Monday, Wednesday, and Friday. They tried to give my veins a few days in advance to bounce back. Right now i am like a bruised pincushion , my face is half paralyzed , and I can sit up for short periods of time.
Wednesday, June 5, 2013
11. One Thing After Another
One thing leads to another..
So, my weekly adventure at Yale started on Sunday afternoon this week. I woke up to no vision in my right eye. This didn't worry me as much as one would have thought because i hear its quite common with MS. Besides, with my migraine a week ago I lost all sensation along the right side of my head, from the middle of my head, across my face, down half my tongue and my neck. So, I kind of for saw something coming. Within a few hours 'my team' had an optometrist bedside to do a full eye exam. Yes, that is why are are here, no fooling around. On a Sunday day morning none the less.
Fortunately he saw nothing wrong with my eye itself but maybe in the myelin or some swelling in the optic nerve. I was just happy to have another one at that point. He did say I would have to go to the clinic tomorrow for a full exam. Now, the clinic is in t
he same hospital, but seems on the other end of the earth and due to my dizziness Anderson lack of balance it would be my first ride in a wheelchair, not a stretchr. So, way out of my comfort zone.
Within a matter of hours, my third MRI was scheduled (2 MRIs and 1 CAT SCAN). This was to be the most tedious of all. It was ordered for brain, eyes and complete spinal cord, with contrasts. That translates to 2 1/2 hours of laying completely still. If you know me at all... still is not one of my strong points.
It is about now I begin to wonder how mu h one human is meant to bear. Because just when I think im at my max, I keep trudging. I also have to strongly interject here that this is when I get little note saying your thinking of me, or flowers, or you spend time with my precious children when I cant, that keeps me going.
There were times when both my parents had bouts of serious illness that , if I knew how much it would have meant to them to slow down my life a little and show them some more support...well I regret not, but im a different person now.
So, back to my events.. since the vision loss popped up,, they thought I needed yet another round of IV Solumedrol (steroids) which brings on blood sugar finger pricks and possible insulin. Now im up to about 6 blood sticks a day.. for about the past month. Thats heparin shots, finger pricks, labs, catheter changes and the big one, the pheresis dagger.
Speaking of which, I still had that treatment to go, which I dont like at all. It is just completely unnatural. I do believe I am beginning to accept it as a necessary evil.
That was my Sunday/Monday.
Destiny is found in two days
One that seems for you
And one that seems against you
So when things seem easy
Dont be proud or careless
And when things are difficult
Be patient!
Hadat 'Ali
So, my weekly adventure at Yale started on Sunday afternoon this week. I woke up to no vision in my right eye. This didn't worry me as much as one would have thought because i hear its quite common with MS. Besides, with my migraine a week ago I lost all sensation along the right side of my head, from the middle of my head, across my face, down half my tongue and my neck. So, I kind of for saw something coming. Within a few hours 'my team' had an optometrist bedside to do a full eye exam. Yes, that is why are are here, no fooling around. On a Sunday day morning none the less.
Fortunately he saw nothing wrong with my eye itself but maybe in the myelin or some swelling in the optic nerve. I was just happy to have another one at that point. He did say I would have to go to the clinic tomorrow for a full exam. Now, the clinic is in t
he same hospital, but seems on the other end of the earth and due to my dizziness Anderson lack of balance it would be my first ride in a wheelchair, not a stretchr. So, way out of my comfort zone.
Within a matter of hours, my third MRI was scheduled (2 MRIs and 1 CAT SCAN). This was to be the most tedious of all. It was ordered for brain, eyes and complete spinal cord, with contrasts. That translates to 2 1/2 hours of laying completely still. If you know me at all... still is not one of my strong points.
It is about now I begin to wonder how mu h one human is meant to bear. Because just when I think im at my max, I keep trudging. I also have to strongly interject here that this is when I get little note saying your thinking of me, or flowers, or you spend time with my precious children when I cant, that keeps me going.
There were times when both my parents had bouts of serious illness that , if I knew how much it would have meant to them to slow down my life a little and show them some more support...well I regret not, but im a different person now.
So, back to my events.. since the vision loss popped up,, they thought I needed yet another round of IV Solumedrol (steroids) which brings on blood sugar finger pricks and possible insulin. Now im up to about 6 blood sticks a day.. for about the past month. Thats heparin shots, finger pricks, labs, catheter changes and the big one, the pheresis dagger.
Speaking of which, I still had that treatment to go, which I dont like at all. It is just completely unnatural. I do believe I am beginning to accept it as a necessary evil.
That was my Sunday/Monday.
Destiny is found in two days
One that seems for you
And one that seems against you
So when things seem easy
Dont be proud or careless
And when things are difficult
Be patient!
Hadat 'Ali
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