First off, let me just say that this post is going to probably bore you to death, or confuse you...or make you think I am totally crazy. It is raw, unedited typing that has taken me almost three days to type because of my hands being so numb and typing being so cumbersome....so it probably jumps around a lot and whatever else...but if you haven't given up on me yet...thanks for taking the time to read the post.
So I guess it has been a while since I have really written anything about how things have been going... I've had quite a few changes over the last 6 months and it's been kind of hectic and I haven't found much time to just sit down and type. I don't like to come across like a whiner or complainer either...so I felt like unless I really had something worth saying, I should just keep quiet...but I'll give a quick run through on what's been going on and then eventually I'll get into what I wanted to write about today.
In December I closed up my shop in SC and we decided to move back home to MA. It was hard for me to do because I had put so much blood, sweat, and tears into my business and I loved my customers so much that I hated to have to shut things down...but my health had to be put first. We moved in with my brother-in-law. Our friends and Family put on the most amazing benefit concert for us to help pay down some of the expenses that we had racked up because of the move and roller coaster of my diagnosis. I will forever be grateful and honored to know so many amazing people, it still overwhelms me to think about it and I still have trouble accepting that everyone came together for me. I mean, I'm just me, just a normal person, but yet so many awesome people donated time and money and talent to help pull off the most spectacular evening I could imagine. <3
In March, my daughter turned ONE! I cannot believe how quickly that flew by. She is the light of my life and I love her more than words can even begin to describe.
Shortly after that, I had some returning symptoms. Who knows what causes them, stress, the new change in my surroundings, not knowing where this new path was going to lead me and my family...who knows. But from March through May I had many symptoms come and go. Numbness, Off Balance, Dizziness, Lightheaded, Headaches, The electrical shock in my neck (L'Hermittes), Exhaustion, MS Hug (tight squeezing of my mid section), Skin sensitivity, pain in my left hand, and the one that I found to be the most debilitating and annoying this time around, Brain Fog. My memory was shot, I could forget something that I have known every day for my whole life, or forget something you told me not 2 minutes before. I was at a loss for words here and there or things would come out slurred or wrong. The worst part of all this (or maybe the best?) was that it was relatively easy to mask. I could get on daily without anyone knowing that there was anything wrong with me. Most people just thought I was forgetful, or maybe didn't think anything of it. I know it began to wear on my husband because he was around me the most. He knows that I used to be sharp and detail oriented and really well organized, I've always helped him with those things as well...and now I just seemed like I was losing it. But even still, it's easier to just shrug it off and figure you are having a bad day or need to focus more, or whatever than to contribute it to something entirely out of your control. I kept trying to get in to see a new neurologist in MA, but even then, I assumed it was just residual symptoms and nothing I really needed to worry about. I mean for me I look at it like this, I have experienced a time where I could not walk or use my arm...that was a very dark and awful time. Anything that is not to that extreme is not so bad so why stress about it? Well, after being told I couldnt see the neurologist until July 28th, I finally managed to get in for May 22nd. The new neurologist was really nice. He specializes in MS so I felt a little better about that. I think he is overworked and running in a million directions, so I did not entirely feel like I spent enough time discussing things with him, but at the same time, I am really good at pretending things are ok, because I always feel they could be worse so why sit there and bother him with my sob story when he's probably seen 10 worse ones today? Anyways, he ordered me to have a new MRI done as well as a special vision test (where they hook those little stickers all over your head) to check for optic neuritis. A few days later the Dr. called me himself and told me that I had brain swelling and so he was sure I was having another exacerbation and he wanted me to go on a 5 day at home Solu-Medrol steroid infusion. Finally, someone wanted to do something. But was it too late? I mean at this point, most of my symptoms were gone or greatly lessened. Brain fog and numb hands being the worst left. If I still had swelling, what the heck had it looked like in March? My biggest fear was permanent damage. Anyways, I was contacted by the infusion center and they told me that they could not figure out how to bill both of my insurances to have a nurse come out to me to put in the IV and take it out and whatever else I needed, so it would cost me $125 per visit out of pocket. Well, I am basically unemployed. My husband works non-stop trying to do whatever he can to help us meet our monthly expenses...there was just no way I could (or wanted to) afford to pay a nurse just because their office couldn't be bothered with figuring out how to properly bill 2 insurance companies. They told me that if I didn't want to delay the medication process any further (as if 3 months wasn't already delayed enough) the only other thing I could do was to find my own nurse to administer the IV. Ok, fine. No big deal, I could hunt down a nurse! Thankfully, one of the times that I find Facebook to really be helpful, I had many people getting together again to help me find a nurse. Another moment I will forever be grateful for. Eventually we learned that my husband's cousin used to be an MS home infusion nurse and she could help me without a problem. After a struggle of getting the medication delivered to me in a timely fashion...I was able to get my IV inserted around 6:00pm Monday night. The problem with that is that you are supposed to get the IV in the morning because Solu-Medrol can keep you awake. I didn't remember that happening last time I was on it in the hospital, so I didn't really think it would be a big deal. It was. Between that and the fact of trying not to move my hand so that I wouldn't mess up the IV...I don't think I got 10 minutes worth of sleep Monday night. The next few days were not quite as bad I thought, although looking back now I realize it probably led to wearing me down quite a bit. My hubby was a wonderful nurse, helping me hook up the IV and flush it out and whatnot each night after work. I felt like the whole thing was really weird...I mean IV's are for hospital stays and sick people...not to be done at home while you sit in front of the TV...right? And weirdest yet was the fact that no one from the IV infusion place seemed to care in the slightest if I actually got the IV going. Once I told them I had a nurse, they never bothered to find out who it was, if I was telling the truth, or anything. I would have thought that this was something they should have done even if just to cover their own butts, but whatever, I was getting my medicine and that's all I really cared about.
Friday night we were able to remove the IV. And I got a little sleep not having to struggle to keep the IV in my hand any longer. I can't say I was feeling any better, just not any worse either I guess. Run down and exhausted, but that is pretty standard these days. Saturday had a full day of fun planned for us. In the early afternoon Abigail and I had to attend my cousin's graduation party. It was great to see that side of my family--some of them had not even met Abigail yet! She just started walking in the last week or so and it was so much fun to watch her waddle around the yard chasing bubbles and soccer balls and balloons. After that we headed off to the next party. A family party for my husband's side of the family. After a quick change for Abigail (because you can't wear the same outfit in pictures for two different parties on the same day of course!) we were off and ready for adventure number two. I was feeling pretty beat. The first party was outdoors and while I didn't do anything crazy, didn't even have a drink...And tried to stay in the shade as much as possible...I was feeling pretty crappy. However, as I normally do, I pushed that aside and continued on to what I had to do. It was great to see my husbands family as well. Lots of them had never met Abigail either. This was a MUCH larger party and I was making my way around to everyone. At this point it was around dinner time and I felt like I had been run over and just wanted to curl into a ball for a long time. That's soooo not normal for me. I am able to go and go until I don't need to anymore. And the fact that I wasn't doing anything that I deemed as too much, it made me mad that I was feeling so awful.
You know how when you see people the standard greeting is "Hi, How are you?" and the standard response is "I'm good! How are you?".... well, I've always been great at throwing that response. No matter what, because, well, isn't that what everyone wants to hear? Not this night. I felt so crappy, that when anyone asked me how I felt (and everyone did) I had to tell them that I felt awful. Most people seemed surprised, either that I threw them a curve ball by not answering with the textbook response or that I looked perfectly fine so how could I not be? Occasionally I would get the look of empathy and that wasn't what I really wanted either. That look always makes me want to start balling. It just does. I don't know why, perhaps because I try so hard to look strong and fine that when anyone peeks through that I am liable to just snap. But that was how I felt Saturday night, like snapping. I just wanted to cry. It's easy to ignore things and pretend they aren't there and just keep on pressing on with life as we know it...but it's pretty damn hard to admit when things are not going as you had planned.
By the time I left the party (around 9:30) I thought I would never survive the drive home. I thought I was going to have to pull over and sleep in the car. The only thing that kept me going was the thought that after I wake up tomorrow, I would feel much better. I did not. I felt awful. I felt as bad, maybe worse than I remember feeling when I was hit with my first attack back in November. My legs and arms physically worked--so that was a plus, but everything felt plain horrid. The only way I can explain this one feeling was like my nerves were all tweaking out. Like my eyes would be closed but I could feel them blinking uncontrollably even through they were closed. And my whole body felt like that. Like everything was blinking on and off over and over. My skin was hypersensitive and completely numb. My back and neck felt like I had been beaten with a hammer over and over and was covered in what felt like bruises. My legs were jello. My joints hurt. Everywhere. I was exhausted like I had been forced to stay awake for years. It was just terrible. I never understood what people that I have come across who have MS meant when they said "don't over do it" or "don't burn the candle at both ends"....I had done it. Burnt my candle at both ends, and sides, and every point in between. I still don't understand fully how I did this...and the only thing I can think was that I really had gotten even less sleep that I had thought. And that I apparently need waaaay more sleep than I had imagined. Today, Monday, I am still feeling like complete crap. A little less like crap, but none the less, much worse than I was one week ago. I suppose I am glad that I just finished the IV Steroid Treatment...because perhaps that will help prevent anything from this from sticking around too long. Or at least that is what I hope for. I woke up this morning with a burst of energy....still feeling mostly all of my symptoms, but had slept decent..I did 3 loads of laundry, mopped the floor, swept the stairs, made breakfast, cleaned the playroom, vacuumed, did dishes, cleaned my bedroom, and folded three loads of laundry all before 3:00. Which--may not seem like a lot, and normally wouldn't to me either, but after how I was feeling, that was like winning a marathon...
So I guess it has been a while since I have really written anything about how things have been going... I've had quite a few changes over the last 6 months and it's been kind of hectic and I haven't found much time to just sit down and type. I don't like to come across like a whiner or complainer either...so I felt like unless I really had something worth saying, I should just keep quiet...but I'll give a quick run through on what's been going on and then eventually I'll get into what I wanted to write about today.
In December I closed up my shop in SC and we decided to move back home to MA. It was hard for me to do because I had put so much blood, sweat, and tears into my business and I loved my customers so much that I hated to have to shut things down...but my health had to be put first. We moved in with my brother-in-law. Our friends and Family put on the most amazing benefit concert for us to help pay down some of the expenses that we had racked up because of the move and roller coaster of my diagnosis. I will forever be grateful and honored to know so many amazing people, it still overwhelms me to think about it and I still have trouble accepting that everyone came together for me. I mean, I'm just me, just a normal person, but yet so many awesome people donated time and money and talent to help pull off the most spectacular evening I could imagine. <3
In March, my daughter turned ONE! I cannot believe how quickly that flew by. She is the light of my life and I love her more than words can even begin to describe.
Shortly after that, I had some returning symptoms. Who knows what causes them, stress, the new change in my surroundings, not knowing where this new path was going to lead me and my family...who knows. But from March through May I had many symptoms come and go. Numbness, Off Balance, Dizziness, Lightheaded, Headaches, The electrical shock in my neck (L'Hermittes), Exhaustion, MS Hug (tight squeezing of my mid section), Skin sensitivity, pain in my left hand, and the one that I found to be the most debilitating and annoying this time around, Brain Fog. My memory was shot, I could forget something that I have known every day for my whole life, or forget something you told me not 2 minutes before. I was at a loss for words here and there or things would come out slurred or wrong. The worst part of all this (or maybe the best?) was that it was relatively easy to mask. I could get on daily without anyone knowing that there was anything wrong with me. Most people just thought I was forgetful, or maybe didn't think anything of it. I know it began to wear on my husband because he was around me the most. He knows that I used to be sharp and detail oriented and really well organized, I've always helped him with those things as well...and now I just seemed like I was losing it. But even still, it's easier to just shrug it off and figure you are having a bad day or need to focus more, or whatever than to contribute it to something entirely out of your control. I kept trying to get in to see a new neurologist in MA, but even then, I assumed it was just residual symptoms and nothing I really needed to worry about. I mean for me I look at it like this, I have experienced a time where I could not walk or use my arm...that was a very dark and awful time. Anything that is not to that extreme is not so bad so why stress about it? Well, after being told I couldnt see the neurologist until July 28th, I finally managed to get in for May 22nd. The new neurologist was really nice. He specializes in MS so I felt a little better about that. I think he is overworked and running in a million directions, so I did not entirely feel like I spent enough time discussing things with him, but at the same time, I am really good at pretending things are ok, because I always feel they could be worse so why sit there and bother him with my sob story when he's probably seen 10 worse ones today? Anyways, he ordered me to have a new MRI done as well as a special vision test (where they hook those little stickers all over your head) to check for optic neuritis. A few days later the Dr. called me himself and told me that I had brain swelling and so he was sure I was having another exacerbation and he wanted me to go on a 5 day at home Solu-Medrol steroid infusion. Finally, someone wanted to do something. But was it too late? I mean at this point, most of my symptoms were gone or greatly lessened. Brain fog and numb hands being the worst left. If I still had swelling, what the heck had it looked like in March? My biggest fear was permanent damage. Anyways, I was contacted by the infusion center and they told me that they could not figure out how to bill both of my insurances to have a nurse come out to me to put in the IV and take it out and whatever else I needed, so it would cost me $125 per visit out of pocket. Well, I am basically unemployed. My husband works non-stop trying to do whatever he can to help us meet our monthly expenses...there was just no way I could (or wanted to) afford to pay a nurse just because their office couldn't be bothered with figuring out how to properly bill 2 insurance companies. They told me that if I didn't want to delay the medication process any further (as if 3 months wasn't already delayed enough) the only other thing I could do was to find my own nurse to administer the IV. Ok, fine. No big deal, I could hunt down a nurse! Thankfully, one of the times that I find Facebook to really be helpful, I had many people getting together again to help me find a nurse. Another moment I will forever be grateful for. Eventually we learned that my husband's cousin used to be an MS home infusion nurse and she could help me without a problem. After a struggle of getting the medication delivered to me in a timely fashion...I was able to get my IV inserted around 6:00pm Monday night. The problem with that is that you are supposed to get the IV in the morning because Solu-Medrol can keep you awake. I didn't remember that happening last time I was on it in the hospital, so I didn't really think it would be a big deal. It was. Between that and the fact of trying not to move my hand so that I wouldn't mess up the IV...I don't think I got 10 minutes worth of sleep Monday night. The next few days were not quite as bad I thought, although looking back now I realize it probably led to wearing me down quite a bit. My hubby was a wonderful nurse, helping me hook up the IV and flush it out and whatnot each night after work. I felt like the whole thing was really weird...I mean IV's are for hospital stays and sick people...not to be done at home while you sit in front of the TV...right? And weirdest yet was the fact that no one from the IV infusion place seemed to care in the slightest if I actually got the IV going. Once I told them I had a nurse, they never bothered to find out who it was, if I was telling the truth, or anything. I would have thought that this was something they should have done even if just to cover their own butts, but whatever, I was getting my medicine and that's all I really cared about.
Friday night we were able to remove the IV. And I got a little sleep not having to struggle to keep the IV in my hand any longer. I can't say I was feeling any better, just not any worse either I guess. Run down and exhausted, but that is pretty standard these days. Saturday had a full day of fun planned for us. In the early afternoon Abigail and I had to attend my cousin's graduation party. It was great to see that side of my family--some of them had not even met Abigail yet! She just started walking in the last week or so and it was so much fun to watch her waddle around the yard chasing bubbles and soccer balls and balloons. After that we headed off to the next party. A family party for my husband's side of the family. After a quick change for Abigail (because you can't wear the same outfit in pictures for two different parties on the same day of course!) we were off and ready for adventure number two. I was feeling pretty beat. The first party was outdoors and while I didn't do anything crazy, didn't even have a drink...And tried to stay in the shade as much as possible...I was feeling pretty crappy. However, as I normally do, I pushed that aside and continued on to what I had to do. It was great to see my husbands family as well. Lots of them had never met Abigail either. This was a MUCH larger party and I was making my way around to everyone. At this point it was around dinner time and I felt like I had been run over and just wanted to curl into a ball for a long time. That's soooo not normal for me. I am able to go and go until I don't need to anymore. And the fact that I wasn't doing anything that I deemed as too much, it made me mad that I was feeling so awful.
You know how when you see people the standard greeting is "Hi, How are you?" and the standard response is "I'm good! How are you?".... well, I've always been great at throwing that response. No matter what, because, well, isn't that what everyone wants to hear? Not this night. I felt so crappy, that when anyone asked me how I felt (and everyone did) I had to tell them that I felt awful. Most people seemed surprised, either that I threw them a curve ball by not answering with the textbook response or that I looked perfectly fine so how could I not be? Occasionally I would get the look of empathy and that wasn't what I really wanted either. That look always makes me want to start balling. It just does. I don't know why, perhaps because I try so hard to look strong and fine that when anyone peeks through that I am liable to just snap. But that was how I felt Saturday night, like snapping. I just wanted to cry. It's easy to ignore things and pretend they aren't there and just keep on pressing on with life as we know it...but it's pretty damn hard to admit when things are not going as you had planned.
By the time I left the party (around 9:30) I thought I would never survive the drive home. I thought I was going to have to pull over and sleep in the car. The only thing that kept me going was the thought that after I wake up tomorrow, I would feel much better. I did not. I felt awful. I felt as bad, maybe worse than I remember feeling when I was hit with my first attack back in November. My legs and arms physically worked--so that was a plus, but everything felt plain horrid. The only way I can explain this one feeling was like my nerves were all tweaking out. Like my eyes would be closed but I could feel them blinking uncontrollably even through they were closed. And my whole body felt like that. Like everything was blinking on and off over and over. My skin was hypersensitive and completely numb. My back and neck felt like I had been beaten with a hammer over and over and was covered in what felt like bruises. My legs were jello. My joints hurt. Everywhere. I was exhausted like I had been forced to stay awake for years. It was just terrible. I never understood what people that I have come across who have MS meant when they said "don't over do it" or "don't burn the candle at both ends"....I had done it. Burnt my candle at both ends, and sides, and every point in between. I still don't understand fully how I did this...and the only thing I can think was that I really had gotten even less sleep that I had thought. And that I apparently need waaaay more sleep than I had imagined. Today, Monday, I am still feeling like complete crap. A little less like crap, but none the less, much worse than I was one week ago. I suppose I am glad that I just finished the IV Steroid Treatment...because perhaps that will help prevent anything from this from sticking around too long. Or at least that is what I hope for. I woke up this morning with a burst of energy....still feeling mostly all of my symptoms, but had slept decent..I did 3 loads of laundry, mopped the floor, swept the stairs, made breakfast, cleaned the playroom, vacuumed, did dishes, cleaned my bedroom, and folded three loads of laundry all before 3:00. Which--may not seem like a lot, and normally wouldn't to me either, but after how I was feeling, that was like winning a marathon...
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