Longest update ever-my husbands health.
Jul 24, 2019 15:43:05 GMT
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**GypsyGirl**, scraphappy0501, and 69 more like this
Post by StephDRebel on Jul 24, 2019 15:43:05 GMT
I just broke down in tears of joy in my kitchen.
My husband and I were married 6 years ago. He moved to Ohio with me to start our new life together and two days shy of three months later he woke up and couldn't walk.
Overnight, his joints had become so painful that he could barely hobble to the toilet and it took him almost an hour to do so. The same week, he woke up with no feeling in his left side and complete left facial paralysis.
We saw doctor after doctor after specialist and no one had any idea what was going on with his body. The specialist who would have all the answers looked at us and said "I'm sorry, but this is so far above my paygrade that I don't even know where to send you next"
We researched and compared, and studied, listened, and learned but the only progress that was being made was the illness in his body progressing.
The first and second years weren't that bad, compared to what we know now. The third year he progressed further and still saw no answers through neurologists, MRIs and specialists.
Last year a visit with an ophthalmologic neurologist revealed that he has 25% complete and permanent vision loss in one eye, he has no feeling at all in the entire left side of his body and after visits Lancaster, Circleville, Chillicothe, Ohio State, online consultations, message boards, support groups, medical journals, dieticians, and everyone else we could have seen we still have no answers.
The closest they got was that it could be MS, but there were a few things that were off and they weren't quite ready to diagnose so we talked about setting an appointment for a spinal tap.
In the past year, his smell and taste changed drastically. I would cook and he would have to leave the house to escape the smell. He would be polite, but I could tell that mealtimes were torture. I started asking him for detailed descriptions of what he would smell and taste for his symptoms journal. The coffee smelled like burnt hair. Onions smelled like roadkill. For over a year he hasn't been able to sit in a restaurant that has strong smells. No fruits or vegetables are tolerable, meat tastes rancid, just about everything was foul. For over three months he ate nothing but homemade hummus with no seasoning (blended garbanzo beans and olive oil) and naan (kind of like pita bread). He blew my mind and I realized how much he had been powering through when we went to one of the top 5 rated restaurants in the United States and he couldn't finish his meal.
I know the struggle and frustration this has caused me and I can't even imagine what it's been like to live it. Every single picture you've seen of us in the last 24 months at a festival or dinner out has been torture for him and I've felt awful taking him out but continued to do so to maintain some sense of normalcy. He got in the car after Thanksgiving dinner and cried because the house was filled with the smell of thanksgiving which to him smelled like he was sitting in a landfill for hours while he was happily trying to enjoy his family while eating hummus. The man is seriously my hero, I can't imagine my mental state after a week, let alone months.
I've continued to cross-reference his symptoms through the years while monitoring new ones and when we started looking outside of MS, we started seeing environmental factors and decided to start seriously looking for a new place to live.
I kept saying 'as soon as Jordan graduates" and didn't think about the fact that the universe was going to hear 'as soon as" and take it literally and as you know, we decided to move a few days after his graduation and the weeks since then have been pure chaos.
While we are moving (yes, it's still a process) I've taken special care to make sure to launder everything and scrub every single surface of every single item that we own, just in case. We don't know if it could have been something in the house, in the yard, in the water, the air, or in our minds but y'all, we are making progress.
His doctor had us start doing a test with essential oils where multiple times a day he would smell four different strong oils to see if we could almost kick start his smeller. it wasn't working and at our next appointment, we are set to have a conversation about the details of having his olfactory nerve cut since we weren't seeing any progress. The hope was that if the bulb that relays messages of smell is completely severed that he won't get the bad smells and tastes which would be an improvement but it would also mean not smelling things forever.
I used to think if I had to give up a sense forever, it would be smell. After a year of describing the smells of everything around us to him and him doing the same, I have a new respect for what a big part of our lives smell is.
It puts it into perspective when I realize that in a few years he's lost 25% of his sense of sight, 50% of his sense of feeling/touch, and 100% of his sense of smell and that's not counting that about 90% of the remaining touch/feeling is painful.
Back to the smell test. The oils weren't working great so we started leaving them at home and smelling all the things in all the places. His descriptions were sometimes better than others but a few days after we started sleeping in the new place he smelled oil and thought it faintly smelled like lavender. He was right and I nearly peed my pants with the small victory. He has been able to smell notes of peppermint, lemon, and a few other little things here and there. He went into the coffee shop to pick up my drink and didn't vomit, just gagged a little and we started noticing little improvements here and there. He's gotten bolder trying things and actually drank and iced coffee on the 4th of July (it was full of Jameson and he drank it fast, but it totally counts)
He's been slowly noticing that foods are a little more tolerable and I've been noticing that when we go out he's a little more patient, and seems to enjoy the time a little bit more. I might say he's even had a good time in the last few weeks. He made dinner this week for the first time in months and even chopped a few onions and peppers to put in my meal. That was a huge deal considering that he couldn't even be in the room with fajitas at a Mexican restaurant before.
Today, I was putting dishtowels away and decided it was rapid-fire smell time. That is when I sneak attack him by shoving something in his face to smell quickly so that he can't have any preconceived fears or ideas and he doesn't see the label.
His smell challenge today was these three candles and two more that are currently on the warmers.
Almond Butter he described as "vanilla? maybe a buttery something? buttercream? "' I would have described it as vanilla, so that's a win. The second one was Pumpkin Apple and he described it as 'apple something or other maybe? " I'll take it. The third was Maple Cinnamon Pancakes and without hesitation he guessed pancakes. Next up was Mahogany Teakwood (yes, I'm a jerk but I'm looking for fragrance notes and profiles, not full names. ) He is used to me messing with him so he was aware that he probably wouldn't get the name right but he said that it smelled almost like cologne and I call that one 'sexy man smell'
The last one, the last one made me burst into tears. I bought it because it said CHEERS and I thought it would be a cute incentive for my team so I didn't have any idea what it was actually supposed to smell like. He sniffed once, twice, and again and thought for a second and smelled it a fourth time before looking at me and saying "There is no way this is right, but it almost smells like champagne."
I laughed and said "that's random, but maybe" and do you know when I turn it over the bottom says the fragrance is CHAMPAGNE WISHES.
What the actual heck y'all.
We still don't know anything medically or if it was indeed environmental and I'm trying to not get my hopes up because I know so well that sometimes victories are followed by challenges but right now, this is a huge win and I intend to embrace every second of joy that it brings.
I have a bottle of Dom Perignon that was gifted to me that we've been saving for a special occasion and we have considered popping the cork a few times but it wasn't something I wanted him to suffer through with me.
If he can smell it, he might be able to taste it and I can't think of a better way to celebrate than by giving it a try.
This may be a tiny victory, but tonight we're going to toast and I feel like this is going to be the sweetest champagne I've ever tasted.
ease
My husband and I were married 6 years ago. He moved to Ohio with me to start our new life together and two days shy of three months later he woke up and couldn't walk.
Overnight, his joints had become so painful that he could barely hobble to the toilet and it took him almost an hour to do so. The same week, he woke up with no feeling in his left side and complete left facial paralysis.
We saw doctor after doctor after specialist and no one had any idea what was going on with his body. The specialist who would have all the answers looked at us and said "I'm sorry, but this is so far above my paygrade that I don't even know where to send you next"
We researched and compared, and studied, listened, and learned but the only progress that was being made was the illness in his body progressing.
The first and second years weren't that bad, compared to what we know now. The third year he progressed further and still saw no answers through neurologists, MRIs and specialists.
Last year a visit with an ophthalmologic neurologist revealed that he has 25% complete and permanent vision loss in one eye, he has no feeling at all in the entire left side of his body and after visits Lancaster, Circleville, Chillicothe, Ohio State, online consultations, message boards, support groups, medical journals, dieticians, and everyone else we could have seen we still have no answers.
The closest they got was that it could be MS, but there were a few things that were off and they weren't quite ready to diagnose so we talked about setting an appointment for a spinal tap.
In the past year, his smell and taste changed drastically. I would cook and he would have to leave the house to escape the smell. He would be polite, but I could tell that mealtimes were torture. I started asking him for detailed descriptions of what he would smell and taste for his symptoms journal. The coffee smelled like burnt hair. Onions smelled like roadkill. For over a year he hasn't been able to sit in a restaurant that has strong smells. No fruits or vegetables are tolerable, meat tastes rancid, just about everything was foul. For over three months he ate nothing but homemade hummus with no seasoning (blended garbanzo beans and olive oil) and naan (kind of like pita bread). He blew my mind and I realized how much he had been powering through when we went to one of the top 5 rated restaurants in the United States and he couldn't finish his meal.
I know the struggle and frustration this has caused me and I can't even imagine what it's been like to live it. Every single picture you've seen of us in the last 24 months at a festival or dinner out has been torture for him and I've felt awful taking him out but continued to do so to maintain some sense of normalcy. He got in the car after Thanksgiving dinner and cried because the house was filled with the smell of thanksgiving which to him smelled like he was sitting in a landfill for hours while he was happily trying to enjoy his family while eating hummus. The man is seriously my hero, I can't imagine my mental state after a week, let alone months.
I've continued to cross-reference his symptoms through the years while monitoring new ones and when we started looking outside of MS, we started seeing environmental factors and decided to start seriously looking for a new place to live.
I kept saying 'as soon as Jordan graduates" and didn't think about the fact that the universe was going to hear 'as soon as" and take it literally and as you know, we decided to move a few days after his graduation and the weeks since then have been pure chaos.
While we are moving (yes, it's still a process) I've taken special care to make sure to launder everything and scrub every single surface of every single item that we own, just in case. We don't know if it could have been something in the house, in the yard, in the water, the air, or in our minds but y'all, we are making progress.
His doctor had us start doing a test with essential oils where multiple times a day he would smell four different strong oils to see if we could almost kick start his smeller. it wasn't working and at our next appointment, we are set to have a conversation about the details of having his olfactory nerve cut since we weren't seeing any progress. The hope was that if the bulb that relays messages of smell is completely severed that he won't get the bad smells and tastes which would be an improvement but it would also mean not smelling things forever.
I used to think if I had to give up a sense forever, it would be smell. After a year of describing the smells of everything around us to him and him doing the same, I have a new respect for what a big part of our lives smell is.
It puts it into perspective when I realize that in a few years he's lost 25% of his sense of sight, 50% of his sense of feeling/touch, and 100% of his sense of smell and that's not counting that about 90% of the remaining touch/feeling is painful.
Back to the smell test. The oils weren't working great so we started leaving them at home and smelling all the things in all the places. His descriptions were sometimes better than others but a few days after we started sleeping in the new place he smelled oil and thought it faintly smelled like lavender. He was right and I nearly peed my pants with the small victory. He has been able to smell notes of peppermint, lemon, and a few other little things here and there. He went into the coffee shop to pick up my drink and didn't vomit, just gagged a little and we started noticing little improvements here and there. He's gotten bolder trying things and actually drank and iced coffee on the 4th of July (it was full of Jameson and he drank it fast, but it totally counts)
He's been slowly noticing that foods are a little more tolerable and I've been noticing that when we go out he's a little more patient, and seems to enjoy the time a little bit more. I might say he's even had a good time in the last few weeks. He made dinner this week for the first time in months and even chopped a few onions and peppers to put in my meal. That was a huge deal considering that he couldn't even be in the room with fajitas at a Mexican restaurant before.
Today, I was putting dishtowels away and decided it was rapid-fire smell time. That is when I sneak attack him by shoving something in his face to smell quickly so that he can't have any preconceived fears or ideas and he doesn't see the label.
His smell challenge today was these three candles and two more that are currently on the warmers.
Almond Butter he described as "vanilla? maybe a buttery something? buttercream? "' I would have described it as vanilla, so that's a win. The second one was Pumpkin Apple and he described it as 'apple something or other maybe? " I'll take it. The third was Maple Cinnamon Pancakes and without hesitation he guessed pancakes. Next up was Mahogany Teakwood (yes, I'm a jerk but I'm looking for fragrance notes and profiles, not full names. ) He is used to me messing with him so he was aware that he probably wouldn't get the name right but he said that it smelled almost like cologne and I call that one 'sexy man smell'
The last one, the last one made me burst into tears. I bought it because it said CHEERS and I thought it would be a cute incentive for my team so I didn't have any idea what it was actually supposed to smell like. He sniffed once, twice, and again and thought for a second and smelled it a fourth time before looking at me and saying "There is no way this is right, but it almost smells like champagne."
I laughed and said "that's random, but maybe" and do you know when I turn it over the bottom says the fragrance is CHAMPAGNE WISHES.
What the actual heck y'all.
We still don't know anything medically or if it was indeed environmental and I'm trying to not get my hopes up because I know so well that sometimes victories are followed by challenges but right now, this is a huge win and I intend to embrace every second of joy that it brings.
I have a bottle of Dom Perignon that was gifted to me that we've been saving for a special occasion and we have considered popping the cork a few times but it wasn't something I wanted him to suffer through with me.
If he can smell it, he might be able to taste it and I can't think of a better way to celebrate than by giving it a try.
This may be a tiny victory, but tonight we're going to toast and I feel like this is going to be the sweetest champagne I've ever tasted.
ease
