Ive been tip toeing for about 5 days now, as my symptoms have slowly gotten worse. I ended yesterday with numbness in my whole lower jaw, tightness in my throat, weakness in my legs and a fever. I was starting to regain my beloved lack of coordination as well. I called the doctor, as you may have read, on Wednesday just to check in. That's when the nurse ordered me in for an MRI. Later that day I started to get pressure in my soft palette and I thought maybe it was sinus related. So, I started taking my antibiotics again. I waited until noon today without hearing anything from the doctor. I couldn't wait a minute longer. So, I paged the MS doctor on call. Luckily she was the one that ordered the MRI. So, she not only wasn't bothered by me calling on a Saturday but also admitted she should have followed up sooner. Within 15 minutes, she read my MRI, compared it to my previous(6 or so) scans and called me back. My MRI was 100% stable. Whewwww. No new lesions. No white matter turning to mush in my brain. No reason to panic. So, it must be a cold, or infection elsewhere. Music to my ears. As you can imagine, all sorts of things were turning through my head. On the forefront....another stay at Yale. I love that place and all, but I would prefer(and so would my kids) for me to be home.
Today, and for the next few days, I am challenging myself. My husband is away for four days. I will take on the household and kids on my own. Since my diagnosis, I have done this for a day at a time, but never this long of a stretch. Its one of the very few times I am thankful I no longer live on a farm or have a demanding job (well, besides the kids....they are pretty demanding). I don't know that I made the right decision, for Im not feeling great, but Im going to do it!
My husband and I are challenged daily with the kids lately. I think they are all at a tough age. The oldest(10) is testing our authority and trying to exert her independence. Our son(3) either has the terrible twos a little late or middle child syndrome is kicking in. Our youngest(18mos) is a peach. Really, she is lovely. She is no longer in the "baby stage" though and you cant just put her down somewhere and expect her to stay... to the contrary! She is everywhere, all the time. No one told us how tough three kids would be. OK, maybe they did, but we were smarter, or more capable than them, so we thought. With three, you are outnumbered, there isn't enough space in the car to separate them effectively, you only have two arms, there are one too few legs on a chicken, etc... You are met with challenges absolutely everywhere. When you have three, you might as well have 4 or 5. Luckily for this MS and my Tysabri, we cant have more, because we would. We just love kids....I guess its a sick, twisted love because they make us utterly crazy!
Take tonight, for instance. I decide to reward myself for making it through a long, tiring day with the kids. So, my parents and I pack up and head to a concert on the beach where we live. Now, my son hasn't napped today so I know his behavior is going to be bad. I expect it. I counter approach it by having an extra glass of wine. As predicted, half way through dinner, despite our endless efforts, he throws sand in the French fries. Ha...I expected that. No biggie tonight. After a while of visiting and playing, he sneaks up behind me and dumps a cup of sand over my head. I did not expect that. So, then, right on the spot, "called" the night. Done. Kids...
While I was there, an old friend(of sorts) came up to me to say HI. In conversation, he says "You aren't at the vineyard anymore....So, where are you now?"... Really? He doesn't know? He can't tell? I figure if he doesn't know about my MS by now, the months I wasn't around, if he cant tell, than why SHOULD he. I reply "At home, with my three kids". He says "Well, you look really happy".
Thanks, I am :)
Saturday, August 17, 2013
Thursday, August 15, 2013
Here We Go Again
There was a point in all of this nonsense, as bad as I felt during the day, I remember if I woke up in the morning and didn't move...if I just held still and didn't move a muscle...I felt like a normal person. I felt as if nothing were wrong. That was before my other symptoms kicked in. Now, I always feel something is wrong. Even if I just wake up and don't open my eyes yet, I feel pins and needles in my face. I feel a constant tremor through my body. The tremor is so much that I have to either clench my teeth or separate them, or else they chatter. Its like electricity is running through my body or something. I often wonder if my kids can sense it. If they can sense Im never really "at rest" and if it makes them nervous or worried. There isn't a minute that goes by during the day that I feel "normal". I have to concentrate on standing, walking, talking, swallowing.
This morning I woke up and, in addition to my facial nonsense, my throat was tight, my neck hurt, my lower jaw was "buzzing". It could be one of a few things: It could be an infection somewhere in my body and Im working so hard at fighting that off that I cant fight off e every symptom of my MS and its acting up, It could be a "new" symptom (which it better not because Im on this high risk, most effective treatment for MS, brain eating drug) or it could be the actual brain eating disease itself. My husband suggested that rather than diagnose it myself to call my specialist. So, I did. I spoke to the nurse, which spoke to the doctor. She told me that "in a normal case" they wouldn't worry, but since it was me.... and my MS is so active and just doesn't give me a break, they would like me to get an MRI as soon as possible. So, here I go again, Tomorrow at 2pm. Wish me luck...
I don't like to leave these blogs all negative. So, I have been progressing rapidly this week. My balance has been great and I am no longer dizzy at all. I can run a little and was even able to save my youngest from careening down the driveway and into the trees yesterday! The kids were so proud of me :). So, hopefully this is just a minor setback and I will be back on the road to recovery shortly.
This morning I woke up and, in addition to my facial nonsense, my throat was tight, my neck hurt, my lower jaw was "buzzing". It could be one of a few things: It could be an infection somewhere in my body and Im working so hard at fighting that off that I cant fight off e every symptom of my MS and its acting up, It could be a "new" symptom (which it better not because Im on this high risk, most effective treatment for MS, brain eating drug) or it could be the actual brain eating disease itself. My husband suggested that rather than diagnose it myself to call my specialist. So, I did. I spoke to the nurse, which spoke to the doctor. She told me that "in a normal case" they wouldn't worry, but since it was me.... and my MS is so active and just doesn't give me a break, they would like me to get an MRI as soon as possible. So, here I go again, Tomorrow at 2pm. Wish me luck...
I don't like to leave these blogs all negative. So, I have been progressing rapidly this week. My balance has been great and I am no longer dizzy at all. I can run a little and was even able to save my youngest from careening down the driveway and into the trees yesterday! The kids were so proud of me :). So, hopefully this is just a minor setback and I will be back on the road to recovery shortly.
Wednesday, August 7, 2013
Progression of Multiple Sclerosis
Today is my four month Anniversary. I got my first symptom of MS four months ago. I know that doesn't seem long, but its been an eternity to me. It just happens to be four months ago was my oldest daughter's birthday. We had plans to go to the water park for her birthday. I was home in bed. Couldn't move. I am making great progress. I have cut down my Physical Therapy to once a week. We add on exercises each week that challenge me more and more. It takes patience and a lot of focus, but I pretty much meet the challenge. This week we ended on balancing on one foot. I did great, until the kids started bickering and fighting in the other room and I came crashing down.
I took my daughter to the pool the other day. We were on our way out. I made my way from where we were sitting, across the pool area, to the gate. I concentrated on the gate and walked towards it. I focused on every step, solid and steady, trying not to waiver or stumble....trying to look normal. After all, the pool here is full of beautiful moms, with a ton of kids, that have it all together. I sized up the gate before I got to it. I lifted the button with one hand and pushed it open with my foot, trying carefully to push just enough so that I could get through it but not so much so that it would slam back against itself and draw attention to me(I have difficulty with the amount of pressure I need to apply to things). I made it through the gate and to the picnic table on the other side. I sat down on the bench and grabbed my journal to scratch a few notes down. There was a woman on the other side of the table. She asked "Are you a writer?". I told her that I wasn't, but I have a blog with a small following of people that said I should write. She asked what the blog was about and I told her of how I was diagnosed with MS this year and the blog tells the story of my diagnosis and struggles through the process. She looked down her nose at me and simply said "Oh, I'm Sorry". Instantly, I thought not about her short reply or sudden lack of interest or halting of conversation. I thought...I made it all the way across the pool area, through the gate and sat down and she didn't know I had anything wrong with me. Yeah, maybe she didn't know how much work and focus it took and she clearly didn't see my writing, but that's progress. :)
I have had two treatments of my possible brain eating infusions so far, and no "new" symptoms have occurred. I just wish my "old" ones would go away faster. I do my therapy and take my meds, prescribed and natural, do massage, see my doctors and whatever else I can think of meanwhile trying to be patient. I am to the point where I am looking beyond how much better I get from here. Looking beyond daily discomfort and set backs. I am now looking long term, to the progression of the disease over time. Frankly, It sucks. In the back of my head I do hope for some miracle cure that will not only stop new symptoms but will reverse old ones and let me live a long normal life, but that is the dreamer in me. I, unfortunately, know my fate is wheelchairs and walkers and more difficulty swallowing and walking and probably even thinking. A friend of mine, a tattoo artist, just finished tattooing a woman's eyebrows because she has MS and just cannot maintain them anymore. Luckily, I don't "maintain" my eyebrows, probably because I don't care that much, but....you get it. Everyone has their story of someone they had to care for in the end with MS and how difficult it was.
I try and spend as much time as I can with my children and hope to be able to do more and take them more places. I want to enable them to have a normal childhood and not hold them back. I need them for their constant love (well, besides for when they hate me) and to be able for me to feel young and capable when they are around.
When it comes to my husband, I think differently. This will anger some of you, but this is how I feel. This is MY blog. Maybe my beliefs are because I have been through divorce, but I do not believe marriage is a covenant through God. Don't get me wrong, I believe in God, I live my life accordingly, and I believe he plays a great part in our lives. But marriage, I believe is a choice. I don't think my husband has made a good choice. He got shorted, ripped off, robbed. He works hard and had plans for the future and should be able to live those out. I try to convince him to. I know it sounds weird. You would think someone in my position would be begging for his love and support and promise that he will be there for me now and in my most difficult years. Part of me, though, just wants to set him free. Part so he doesn't have to be held back and part on my end so he doesn't have to watch be become what I know is my fate. So far, despite my convincing, he is still here.
I am still in the early stages, I guess, of rebuilding my sense of self. I take great pride in my life. The fact that I can care for my kids, provide them with healthy food, keep the house clean and nurture them is fulfilling to me. I have my routine of less therapy and more enjoyment during my weeks. I can enjoy my gardening, swimming occasionally, cooking good meals(on my good nights) and a nice glass of wine here and there. Then, end on the nights snuggling my kids to bed. From the outside, it looks like the perfect life. My beautiful life.
I took my daughter to the pool the other day. We were on our way out. I made my way from where we were sitting, across the pool area, to the gate. I concentrated on the gate and walked towards it. I focused on every step, solid and steady, trying not to waiver or stumble....trying to look normal. After all, the pool here is full of beautiful moms, with a ton of kids, that have it all together. I sized up the gate before I got to it. I lifted the button with one hand and pushed it open with my foot, trying carefully to push just enough so that I could get through it but not so much so that it would slam back against itself and draw attention to me(I have difficulty with the amount of pressure I need to apply to things). I made it through the gate and to the picnic table on the other side. I sat down on the bench and grabbed my journal to scratch a few notes down. There was a woman on the other side of the table. She asked "Are you a writer?". I told her that I wasn't, but I have a blog with a small following of people that said I should write. She asked what the blog was about and I told her of how I was diagnosed with MS this year and the blog tells the story of my diagnosis and struggles through the process. She looked down her nose at me and simply said "Oh, I'm Sorry". Instantly, I thought not about her short reply or sudden lack of interest or halting of conversation. I thought...I made it all the way across the pool area, through the gate and sat down and she didn't know I had anything wrong with me. Yeah, maybe she didn't know how much work and focus it took and she clearly didn't see my writing, but that's progress. :)
I have had two treatments of my possible brain eating infusions so far, and no "new" symptoms have occurred. I just wish my "old" ones would go away faster. I do my therapy and take my meds, prescribed and natural, do massage, see my doctors and whatever else I can think of meanwhile trying to be patient. I am to the point where I am looking beyond how much better I get from here. Looking beyond daily discomfort and set backs. I am now looking long term, to the progression of the disease over time. Frankly, It sucks. In the back of my head I do hope for some miracle cure that will not only stop new symptoms but will reverse old ones and let me live a long normal life, but that is the dreamer in me. I, unfortunately, know my fate is wheelchairs and walkers and more difficulty swallowing and walking and probably even thinking. A friend of mine, a tattoo artist, just finished tattooing a woman's eyebrows because she has MS and just cannot maintain them anymore. Luckily, I don't "maintain" my eyebrows, probably because I don't care that much, but....you get it. Everyone has their story of someone they had to care for in the end with MS and how difficult it was.
I try and spend as much time as I can with my children and hope to be able to do more and take them more places. I want to enable them to have a normal childhood and not hold them back. I need them for their constant love (well, besides for when they hate me) and to be able for me to feel young and capable when they are around.
When it comes to my husband, I think differently. This will anger some of you, but this is how I feel. This is MY blog. Maybe my beliefs are because I have been through divorce, but I do not believe marriage is a covenant through God. Don't get me wrong, I believe in God, I live my life accordingly, and I believe he plays a great part in our lives. But marriage, I believe is a choice. I don't think my husband has made a good choice. He got shorted, ripped off, robbed. He works hard and had plans for the future and should be able to live those out. I try to convince him to. I know it sounds weird. You would think someone in my position would be begging for his love and support and promise that he will be there for me now and in my most difficult years. Part of me, though, just wants to set him free. Part so he doesn't have to be held back and part on my end so he doesn't have to watch be become what I know is my fate. So far, despite my convincing, he is still here.
I am still in the early stages, I guess, of rebuilding my sense of self. I take great pride in my life. The fact that I can care for my kids, provide them with healthy food, keep the house clean and nurture them is fulfilling to me. I have my routine of less therapy and more enjoyment during my weeks. I can enjoy my gardening, swimming occasionally, cooking good meals(on my good nights) and a nice glass of wine here and there. Then, end on the nights snuggling my kids to bed. From the outside, it looks like the perfect life. My beautiful life.
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