a new kind of "limbo"
Long ago, I used to be on here a lot under the username, Limboland (turned out to be a not-so-great username ;p). Back then, I dealt with the "limbo" of not knowing for certain what was wrong and desperately seeking answers. For those who have never gone through years of "not knowing" why you have strange and disabling symptoms, it must seem really weird that I was glad to finally get a diagnosis of MS. It wasn't that I was GLAD I had it; it was a huge relief to finally know WHAT I had and get treatment for it.
Now....I am facing a completely different type of limbo; the uncertainty of: knowing whether or not I should teach another class in the fall; knowing whether or not it would be reasonable to homeschool my daughter (cyber charter school) if I don't work; knowing whether a planned family trip to India (my hubby's home country) next December is feasible; etc.
I had a horrible flare in September that left some residual problems (a worsening of my mobility). Then, after I had to "ride it out" b/c the steroid tx didn't work, I had a brief period in November where I finally felt somewhat better. However, by mid-December, my sx slowly seemed to worsen again. I had managed to finish teaching my fall class, and was excited about Christmas and the choice I'd made to not teach in the spring. It all was pretty much crushed by the return of my sx; I was basically back to the point where I was last September...during holiday celebrations.
Now, we are looking at making extra payments on our mortgage in order to be in a better position to purchase a piece of land. Once we have paid off the land, we can use it as equity/downpayment to have a home built to fit our needs. I can no longer manage to get around well in our split level home.
In addition, I started the process of going through OVR in order to be able to see if I can get a power chair and modified minivan before we have the home we desire. Glitch: I'm not sure if my health is good enough or will improve enough to be able to work in the fall. If that's the case, I need to let the caseworker know asap; esp. before we go through the mobility evaluation for a power chair.
Because this is all happening during the holidays (of course
), I have been unable to get anyone from the neurology dept. to contact me; even though I began leaving messages by phone and then email about a week before Christmas. I really need some advice and an examination to see if I need to change my DMD (as was mentioned to me by my neuro in September), to see if I need tx for a flare (currently visiting relatives for New Year's and am unable to participate in pretty much anything), and to get a better idea of what I may be able to do or not do in the coming year.
It's so great to be able to just "pour this out" on here.
It has been the source of so much stress for me. Plus, I'm really tired of everyone else telling me what they think I need to do or not do; almost as much as I'm tired of these awful symptoms that seem to be stealing away a lot of opportunities to spend time with my family.
Praying friends are very much encouraged to pray for me.
Now....I am facing a completely different type of limbo; the uncertainty of: knowing whether or not I should teach another class in the fall; knowing whether or not it would be reasonable to homeschool my daughter (cyber charter school) if I don't work; knowing whether a planned family trip to India (my hubby's home country) next December is feasible; etc.
I had a horrible flare in September that left some residual problems (a worsening of my mobility). Then, after I had to "ride it out" b/c the steroid tx didn't work, I had a brief period in November where I finally felt somewhat better. However, by mid-December, my sx slowly seemed to worsen again. I had managed to finish teaching my fall class, and was excited about Christmas and the choice I'd made to not teach in the spring. It all was pretty much crushed by the return of my sx; I was basically back to the point where I was last September...during holiday celebrations.
Now, we are looking at making extra payments on our mortgage in order to be in a better position to purchase a piece of land. Once we have paid off the land, we can use it as equity/downpayment to have a home built to fit our needs. I can no longer manage to get around well in our split level home.
In addition, I started the process of going through OVR in order to be able to see if I can get a power chair and modified minivan before we have the home we desire. Glitch: I'm not sure if my health is good enough or will improve enough to be able to work in the fall. If that's the case, I need to let the caseworker know asap; esp. before we go through the mobility evaluation for a power chair.
Because this is all happening during the holidays (of course
), I have been unable to get anyone from the neurology dept. to contact me; even though I began leaving messages by phone and then email about a week before Christmas. I really need some advice and an examination to see if I need to change my DMD (as was mentioned to me by my neuro in September), to see if I need tx for a flare (currently visiting relatives for New Year's and am unable to participate in pretty much anything), and to get a better idea of what I may be able to do or not do in the coming year.It's so great to be able to just "pour this out" on here.
It has been the source of so much stress for me. Plus, I'm really tired of everyone else telling me what they think I need to do or not do; almost as much as I'm tired of these awful symptoms that seem to be stealing away a lot of opportunities to spend time with my family.Praying friends are very much encouraged to pray for me.
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