I will start this short, yet thought invoking post, by saying I probably should not be posting after 2 glasses of wine. Or, in fact after a wonderful dinner and a long overdue date night with my husband for that matter. I should just be settling in and calling it a night. But something is on my brain and it wont let me settle.
On the way home from dinner our conversation trail lead us on to money. I said that I never imagined I would ever be on disability. My husband mentioned how no one ever thinks they will be. Then he says "but at least it eliminates the panick". What does that mean, I say. "The panick of not being able to find or hold down a job with your illness, the panick of not being able to drive to work, the panick of finding and affording someone to take care of the kids. It allows you to be home with them". Really? "Im glad it eliminates your panick", I say and thats where my night ended. Stopped short. Right on the Litchfield-Goshen line. At first I was furious at him and then i realized, if yoou have never been through a life changing event like this, you see things differently. There will always be panick. One day I was fine and the next, hour by hour, I couldnt hold my kids, I couldnt walk, couldnt use my arms or even write. It didnt just happen once. It happened 3 times. When I was in Yale, on "super human" steroids and plasma transfer, I lost my vision... within hours. It can happen again at any time. Thats panick. My brain and my body digest it different now then they would have used to. And, as much as I can think of, there is nothing that will take that feeling away. Not a tysabri infusion, not even a cure. If not ms, it could be cancer. It could be a heart attack. It could be anything. Life is fragile. Im not a hypochondriac. I don't live in a sheer state. When I tuck my kids in at night and curl up in my safe warm bed I know how good I have it. I know im blessed... but...im never at ease. Maybe that will change. Im still in my first year here. Those of you with ms or some other life altering event... does that unsettling feeling, that panick, go away. Or, does it always feel like something is looming? Its interesting to observe other peolle and what they panick about and how they panick. My body is so used to it that im not sure how i would cope without it.... but it would be nice!
Friday, January 24, 2014
Saturday, January 18, 2014
Setting The Bar
I must always, always remind myself that I have come a long way. Still, I always thought my weeks would have steadied out by now, my symptoms would have steadied out by now. I wasn't scared when I lost sight in my eye because I knew it would come back. I knew the pins and needles in my face and my tongue, eye, neck, etc.. would go away (they haven't). I knew that I would be the 'Poster Child of MS". I would do the incapable and unthinkable with this disease. I would run marathons, I would have the body of an athlete. I would be travelling the country doing speeches and talks about what Ive conquered... Its been 8 months, to the day, of my diagnosis. Its not quite like that.
It got discouraging for me, as any challenge does that I cannot meet or exceed. Then, in one moment of clarity. Those moments have always puzzled me. You think you are in tune with your life and have an excellent open view of what's going on. Then, you get these moments where you see things in a whole new light. Well, In my moment of clarity, I realized, I AM the poster child of MS. I am the poster child of MY MS. It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next. I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS. When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS. When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS. I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do. And I realize that many other people out there with this disease are their own Poster Children as well. I have come up with a system to keep me going. I start the day running. I make an unattainable list of things to get done. I go, go, go. I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel. I push through the tired and the hurt and I just do it. So, the days I physically or mentally CANT.... Im like a normal person, not supermom. For now, it works.
This is a good week for me. Ive accomplished so much here at home. Ive even been able to watch the kids and the house and the dog while Al has been gone for the week. Some points were not easy, not easy at all. Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist. She has two holes in her heart. One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one. This causes stress on the right side of her hear and will make it larger over time. We have been checking on this since in utero and finally put a surgery date on the calendar, next January. The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun. The surgeons say this is a "routine" procedure....but you know how that is. Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant. Its been on my mind since before her birth, but especially since my diagnosis. When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself". All the doctors are so incredibly compassionate and accommodating though. They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital. Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven. Appt went great. The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI. YAY. I will go back in another 3 months for MRI and visit.
We made another big family decision and decided to adopt a "family" dog. Since our Annie passed away, our kids have been aching for a pet dog. We figured getting a family dog would also ease the stress on MY dog when I do end up getting it. Within a matter of days, thanks to a friend, we found the PERFECT dog. She is a children loving, obedient 5 yr old black lab. Susie has adjusted very quickly to our family and absolutely loves all the attention. She also helps me out here and there getting around the house. Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog.
It got discouraging for me, as any challenge does that I cannot meet or exceed. Then, in one moment of clarity. Those moments have always puzzled me. You think you are in tune with your life and have an excellent open view of what's going on. Then, you get these moments where you see things in a whole new light. Well, In my moment of clarity, I realized, I AM the poster child of MS. I am the poster child of MY MS. It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next. I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS. When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS. When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS. I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do. And I realize that many other people out there with this disease are their own Poster Children as well. I have come up with a system to keep me going. I start the day running. I make an unattainable list of things to get done. I go, go, go. I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel. I push through the tired and the hurt and I just do it. So, the days I physically or mentally CANT.... Im like a normal person, not supermom. For now, it works.
This is a good week for me. Ive accomplished so much here at home. Ive even been able to watch the kids and the house and the dog while Al has been gone for the week. Some points were not easy, not easy at all. Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist. She has two holes in her heart. One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one. This causes stress on the right side of her hear and will make it larger over time. We have been checking on this since in utero and finally put a surgery date on the calendar, next January. The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun. The surgeons say this is a "routine" procedure....but you know how that is. Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant. Its been on my mind since before her birth, but especially since my diagnosis. When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself". All the doctors are so incredibly compassionate and accommodating though. They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital. Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven. Appt went great. The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI. YAY. I will go back in another 3 months for MRI and visit.
We made another big family decision and decided to adopt a "family" dog. Since our Annie passed away, our kids have been aching for a pet dog. We figured getting a family dog would also ease the stress on MY dog when I do end up getting it. Within a matter of days, thanks to a friend, we found the PERFECT dog. She is a children loving, obedient 5 yr old black lab. Susie has adjusted very quickly to our family and absolutely loves all the attention. She also helps me out here and there getting around the house. Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog.
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