I am a Traditionalist, Old Fashioned. I have been referred to as having 'Old Blood'(Ironic now, I know). So, you wont ever come across anything ultra-personal in my blog, just to set you at ease. The leg shaving story was about as personal as I get. With that being said, I view the bedroom as a "sacred space". Its where you let your guard down, (where, as my husband says "I solve all the worlds problems", where your heart can be open and your mind can be free.
On April 14th I spent a night cuddling in bed with my children. All of them held close, not feeling that "let your guard down" feeling, but with the feeling of something bad to come. Someone once told me (that had bad news to tell me) that when I had a bad feeling, I was strangely and usually right. Yuk! So, I held my kids tight. The next day I had my first major attack of MS and it sent me to the hospital. It severed my life, temporarily, with my children. I was their main caregiver. I put them all to sleep at night, took care of them when their dad worked days in a row, etc... I had never been away from the youngest ones. Now, I packed us all up to go on vacation, somewhere unfamiliar, and left them. Suddenly and unexpectedly. The youngest was still nursing and was used to me cuddling her to sleep every night. My son just came through a rough patch of separation anxiety with his dad and had attached himself back to me. My oldest, due to divorce and custody issues, has a difficult time in the close environment with both my husband and mother in law. The one thing you assure your kids is that you will be there for them. Ive learned, the hard way, this isn't the best idea. I didn't return back from the hospital(and still have completely not returned) for over a week. We packed up and went home. I, as my blog explained, was home but couldn't take care of them, couldn't change diapers, couldn't feed them, couldn't bathe them or put them to sleep. I was like a stranger in their house, but I assured them I was here to stay now and would get stronger every day. Back to the hospital I went, this time for even longer and farther away. So, visits weren't nearly as frequent. Mid June, I guess it was, I returned home. I was even more of a stranger. The little ones wanted nothing to do with me. They didn't want to sit with me, let me change them, pick them up, feed them, etc... When I had to put them to bed they would just cry for their dad. Well, I have been trying hard to get them back, to love them without being concerned about getting love back. I thought that was going to be a huge challenge, but when it comes to your kids, its easy. After accomplishing this, I realize that's the way you should relate to everyone in your life, to treat them with expecting nothing in return... Ive come to the realization that its not a challenge at all, its grace. It was only a few nights ago that I had to put all the kids to bed by myself. After they wound down and finally fell asleep, it was just me, laying there, in our "sacred space" with our guards let down, our hearts open. There was no one happier in the world at that moment than me. I could not ask God for one more thing, I had everything that mattered. If it weren't for my illness, I wouldn't look at this situation the same. In that way, and others, I am thankful for this illness. A few nights later, they all snuggled me and drifted off without once asking for their dad. I was all they needed. I gave them my love, unconditionally with no expectations, and I got it back. Life is funny like that, teaching us lessons in its own time.
I also got the privilege of sleeping in the same bed alone with my husband the other night. We are transitioning the kids each into their own beds. As much as he disagrees with the idea of a "family bed" that is what we have had for the last three years or so. On my part, because I think its natural. On Al's part because he falls asleep before the kids and is too tired to put them in their beds. Nonetheless, one of the things I actually miss about Yale is Al slept by my side every night. This time, though, we were in the same bed, our guard let down, hearts open. I lay awake for hours just thinking of how much it meant. I look back in the past and think of others and myself being in the position of a loved one using the words "they slept in the same bed, but nothing happened, or it meant nothing". What a wrongly absurd statement, or maybe a statement from someone with less morals, less tradition. I feel bad for them, actually, looking back. They are missing so much of what human relationships are really about and the precious moments they hold sacred.
My illness had lead me to live in the present, to listen and take to heart all the words people share with me, to not promise anything in the future. No matter how much you think something will or will not happen, the only sure things are the here and now. In part, it is heartbreaking to me that I cannot promise to my children that I will be here for them, that I'm not going anywhere.. or anything else in the future for that matter. It does, however, make this disease easier to handle. I don't get caught up in thinking what the future holds for me, that every day I have to deal with difficulty talking and swallowing, that every meal I cannot enjoy to its full extent because my tongue is half pins and needles. I think... This is what I have to deal with now. Tomorrow, maybe not. "In his heart a man plans his course, but the Lord determines his steps".
Sunday, July 28, 2013
Friday, July 26, 2013
My Blog, my progress and whats to come!
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".
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 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
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