Once again, medical leave denied and notified I'm being terminated. How can you be told you can have medical leave for one year, then they continually ask you to recertify and deny your leave. I am diagnosed with multiple sclerosis and there has been no improvement over six months, only new symptoms.
I am considering just resigning. Maybe without this constant stress, I could find some path to improvement? The biggest problem, is I can't afford health coverage if I do this - or if they terminate me.
I've barely been able to get treatment though because it seems like every single appointment carries another stack of paperwork that needs to be completed. And there is no heath care crisis in this country?
Tuesday, October 23, 2012
Friday, October 19, 2012
2012 . 10 . 19
I had physical therapy this morning. My PT therapist told me there are so many advantages to the wheelchair she ordered for me. I can keep going after my legs collapse, get to the top of my yard sometimes, go to the store even when I'm tired - oh yeah ...
I learned tonite what it means to an important relationship to not be able to communicate, to communicate innapropriately and then get mad at yourself for doing so. This is really hard. It's making me think there is no point in even trying to talk. Nothing really is understood well. And it just makes me really sad. Really, really sad.
We also talked, the day after my latest MRI, about my diagnosis - and my absent doctor, who is also, I've learned, the absent doctor for many in my area who have a diagnosis of MS. Yesterday, a nurse from Shared Solutions, the company who manages all medications for MS, stated that what I am going through right now indicates an exacerbation of MS and likely should be treated with steroids. I didn't get steroid therapy for the last or any previous possible exacerbation, why would I expect it for this one?
My PT therapist and I also talked about my fear of another diagnosis - one that only my neuro at Hopkins would find. If my MRI yesterday does not show lesions, I am very confident and afraid that the diagnosis will be ALS. And, already, I've gotten myself isolated because of language difficulty.
Not a good night....
I learned tonite what it means to an important relationship to not be able to communicate, to communicate innapropriately and then get mad at yourself for doing so. This is really hard. It's making me think there is no point in even trying to talk. Nothing really is understood well. And it just makes me really sad. Really, really sad.
We also talked, the day after my latest MRI, about my diagnosis - and my absent doctor, who is also, I've learned, the absent doctor for many in my area who have a diagnosis of MS. Yesterday, a nurse from Shared Solutions, the company who manages all medications for MS, stated that what I am going through right now indicates an exacerbation of MS and likely should be treated with steroids. I didn't get steroid therapy for the last or any previous possible exacerbation, why would I expect it for this one?
My PT therapist and I also talked about my fear of another diagnosis - one that only my neuro at Hopkins would find. If my MRI yesterday does not show lesions, I am very confident and afraid that the diagnosis will be ALS. And, already, I've gotten myself isolated because of language difficulty.
Not a good night....
Wednesday, October 17, 2012
2012 . 10 . 17
So today was the day I heard the word I've been dreading ... wheelchair.
Yesterday afternoon, what I suppose was inevitable, but didn't expect for at least a few years, happened. I couldn't get up from my chair. This would be comical if for some silly reason, like having too much fun or too much to drink. As it was, I was horrified. No amount of effort could get these legs to push me into a standing position.
Several times through the afternoon and evening, my hubby lovingly lifted me up so I could drag my legs into another room, thanks only to my cane. It was just after dinner when I broke down in tears, no sobs. I was sure I wouldn't be able to get up the stairs to go to bed.
I could probably handle this under somewhat normal circumstances, but with the house still in renovation mode - month 6 - there is nowhere to sleep downstairs. At least, not anywhere near comfortably.
Morning proved my legs only better enough to get me up and down with much effort. I had physical therapy this morning. Admitted to my therapist that my legs feel 'dead.' After having me do a few gentle exercises, she took my husband aside and told him - as if I were not even there - that she was sending request to my doctor for a wheelchair evaluation.
I still can't speak but a few words at a time, and they usually don't make a lot of sense unless you've lived with me as long as my life partner has. So, all I could do is cry.
My second brain/C-spine MRI is tomorrow. It stinks to even say this, but I hope they find the lesions. After reviewing all the medical records (including my LP results that DID test for Lyme's) I have managed to get copies of, I am convinced that yes, I do have Multiple Sclerosis. And it is progressive. Having a mind that leans more toward science - I need to *see* it. I know you're there....show yourself.
How just like my chaotic, upside-down life would it be to end up in a wheelchair from MS before they ever actually SEE my lesions?
Yesterday afternoon, what I suppose was inevitable, but didn't expect for at least a few years, happened. I couldn't get up from my chair. This would be comical if for some silly reason, like having too much fun or too much to drink. As it was, I was horrified. No amount of effort could get these legs to push me into a standing position.
Several times through the afternoon and evening, my hubby lovingly lifted me up so I could drag my legs into another room, thanks only to my cane. It was just after dinner when I broke down in tears, no sobs. I was sure I wouldn't be able to get up the stairs to go to bed.
I could probably handle this under somewhat normal circumstances, but with the house still in renovation mode - month 6 - there is nowhere to sleep downstairs. At least, not anywhere near comfortably.
Morning proved my legs only better enough to get me up and down with much effort. I had physical therapy this morning. Admitted to my therapist that my legs feel 'dead.' After having me do a few gentle exercises, she took my husband aside and told him - as if I were not even there - that she was sending request to my doctor for a wheelchair evaluation.
I still can't speak but a few words at a time, and they usually don't make a lot of sense unless you've lived with me as long as my life partner has. So, all I could do is cry.
My second brain/C-spine MRI is tomorrow. It stinks to even say this, but I hope they find the lesions. After reviewing all the medical records (including my LP results that DID test for Lyme's) I have managed to get copies of, I am convinced that yes, I do have Multiple Sclerosis. And it is progressive. Having a mind that leans more toward science - I need to *see* it. I know you're there....show yourself.
How just like my chaotic, upside-down life would it be to end up in a wheelchair from MS before they ever actually SEE my lesions?
Monday, October 15, 2012
2012 . 10 . 15
The day began with the familiar flash of blue upon opening my eyes. It's always hard to see at first, but clearer comes the web and grandmother spider. She crawls right to my face until I can see her crystalized eyes. What is it, grandmother? Is she plucking my thread? Or, telling me of another? I hear the dogs beckoning me to let them out and know I need to go before I'm ready, or She is finished with me. Slowly I sit up to dress as the vision fades from my eyes.
I worry for awhile that She is telling me my almost 94-year-old grandmother may have passed. But, thankfully, no such news. I wonder and worry, another? Then, having not been able to speak normally, or sometimes at all, for almost a week now I wonder - is this life almost over?
More forms - forms and forms and forms. When is a person supposed to heal? rest? recover? or learn to live with what they've been diagnosed with? Let alone, find the believable evidence to prove the diagnosis, or find the right one? The medication I'm on doesn't even become effective, when it's effective (30% of the time) for 3 to 9 months. I'm not even 3 months in.
We call (because no one can understand me on a phone, they just hang up) and hubby tries to get me appointment with my PCP to help with paperwork. No appointments - they say bring forms up. So, hubby runs me in to office to drop of the forms. After 20 questions, I think she may get them today, but I'll have another set in a week or so. I'm sure. No relief. No kind of life.
I realize one of the forms is asking me to resign from my job. I was told I would be on leave for one year - well, that's more than 3 months, more than 6 months, more than 9 months. There was a glimmer of hope. But now, unable to speak, in pain, so tired, no better at remembering or concentrating - what now? There are too many questions and no way to get answers when you can't speak legibly on the phone. What now?
I worry for awhile that She is telling me my almost 94-year-old grandmother may have passed. But, thankfully, no such news. I wonder and worry, another? Then, having not been able to speak normally, or sometimes at all, for almost a week now I wonder - is this life almost over?
More forms - forms and forms and forms. When is a person supposed to heal? rest? recover? or learn to live with what they've been diagnosed with? Let alone, find the believable evidence to prove the diagnosis, or find the right one? The medication I'm on doesn't even become effective, when it's effective (30% of the time) for 3 to 9 months. I'm not even 3 months in.
We call (because no one can understand me on a phone, they just hang up) and hubby tries to get me appointment with my PCP to help with paperwork. No appointments - they say bring forms up. So, hubby runs me in to office to drop of the forms. After 20 questions, I think she may get them today, but I'll have another set in a week or so. I'm sure. No relief. No kind of life.
I realize one of the forms is asking me to resign from my job. I was told I would be on leave for one year - well, that's more than 3 months, more than 6 months, more than 9 months. There was a glimmer of hope. But now, unable to speak, in pain, so tired, no better at remembering or concentrating - what now? There are too many questions and no way to get answers when you can't speak legibly on the phone. What now?
Tuesday, October 9, 2012
2012 . 10 . 09
Days like this are from some other dimension. How you can be feeling ok - usual fatigue-ridden, painful, forgetful day - then horrendous, can't do a thing day.
I can't comprehend a crochet pattern today - this was the first indication as I sat with a cup of tea and wanted to work on a holiday gift. I did the same row five times. I'm pretty sure it's still not right, but I can't be certain. So I gave up. This is the theme of the day - give it a try, try it again, give up and do something else until you've exhausted most of your options given the mobility issue. Beer anyone? Pain relief and relief from wishing to do any other productive thing.
Next my leg decided it doesn't belong to this body. It drags behind me when I try to walk or flops down and at least holds a little of my weight. It's an all day cane day.
Then I try to ask my hubby if there is anything I can do to help him - caboladoamiaenmtmekaeoianteontoinatoientlak - nevermind :(
Not a shot day, but injection sites from the last week are itching intensely - another side affect of Copaxone.
I had conversation with the neuro at Hopkins today - he's ordering more tests. My mission is to get them done and results before my Nov 5 appt. I ordered additional medical records as well. I hope he has an answer on Nov 5.
I let him know about a conversation I had with my neighbor's sister. She has symptoms almost identical to mine, and was diagnosed with Multiple Sclerosis, as I have been. It was later discovered that was she actually had was late disseminated lyme's disease. The disease has caused irreversible neurologic damage. Now under control, she is still unable to work or do much each day. She spends her days after treatment much like I do now - a few hours at a time.
I researched this, and one key difference in our cases is that she did test positive for lyme antibody - I do not. Although I've had lyme's disease at least three times that I can remember, all were treated promptly and I have tested negative on every titre. I realize it's entirely possible that this could still be an issue, so I mentioned it to my neuro at Hopkins.
I'm SO cold today - no matter what I do - so so so cold. Having tremors - pain is at least a 7.
Thank goodness I don't have to cook dinner today - I'd likely kill us the way the day is going.
I can't comprehend a crochet pattern today - this was the first indication as I sat with a cup of tea and wanted to work on a holiday gift. I did the same row five times. I'm pretty sure it's still not right, but I can't be certain. So I gave up. This is the theme of the day - give it a try, try it again, give up and do something else until you've exhausted most of your options given the mobility issue. Beer anyone? Pain relief and relief from wishing to do any other productive thing.
Next my leg decided it doesn't belong to this body. It drags behind me when I try to walk or flops down and at least holds a little of my weight. It's an all day cane day.
Then I try to ask my hubby if there is anything I can do to help him - caboladoamiaenmtmekaeoianteontoinatoientlak - nevermind :(
Not a shot day, but injection sites from the last week are itching intensely - another side affect of Copaxone.
I had conversation with the neuro at Hopkins today - he's ordering more tests. My mission is to get them done and results before my Nov 5 appt. I ordered additional medical records as well. I hope he has an answer on Nov 5.
I let him know about a conversation I had with my neighbor's sister. She has symptoms almost identical to mine, and was diagnosed with Multiple Sclerosis, as I have been. It was later discovered that was she actually had was late disseminated lyme's disease. The disease has caused irreversible neurologic damage. Now under control, she is still unable to work or do much each day. She spends her days after treatment much like I do now - a few hours at a time.
I researched this, and one key difference in our cases is that she did test positive for lyme antibody - I do not. Although I've had lyme's disease at least three times that I can remember, all were treated promptly and I have tested negative on every titre. I realize it's entirely possible that this could still be an issue, so I mentioned it to my neuro at Hopkins.
I'm SO cold today - no matter what I do - so so so cold. Having tremors - pain is at least a 7.
Thank goodness I don't have to cook dinner today - I'd likely kill us the way the day is going.
Tuesday, October 2, 2012
2012 . 10 . 02
So, today's lesson is this - my brain is really f-d up.
I had a lip biopsy for the doc at Hopkins yesterday, to prove or disprove that I might have Sjogren's syndrome in addition to, or instead of MS. I loved the doc who did this - he did his best to convince me this is an unnecessary procedure. He didn't have to convince me, I was totally on board and would like to have told him, okay, I pass. Especially when he mentioned there is a 40-60% false negative for this test. Hmmmmm ....
But, given my loyalty to this doc, I allowed my bottom lip to be cut open so they could harvest a few salivary glands for examination. I haven't eaten much in the way of solid food since. My tarot cards said this is a bad idea - unfortunately, I didn't consult them until AFTER the procedure. My bad.
I had planned, for the second week in a row, on visiting the local Farmer's Market (one of the many we are blessed to have in our area) and pick up some fruit for us, some snacks and dinner for our daughter, and maybe dinner for us. It is an absolutely horrid day here - steady, heavy rain, fog, damp, cold - a really bad day anyone with an autoimmune disorder would understand. Even when I wasn't having debilitating symptoms over the last 12 years, a really cold, damp, dreary day would always knock me back.
Dear hubby said NO. Not only was the weather bad, but the market I wanted to go to was so much walking, even to get from the car to the parking lot. I lost my balance yesterday afternoon. It's never good, but really, I left it somewhere on the hospital campus - it hit suddenly. It's still not back, even to my new normal levels. So, we stayed home.
I tried several things today from my chaotic brain cloud - none of them turned out well. On top of that, I'm hungry, but can't really eat. I gave up. I did what my sweetheart has been telling me to do for weeks - nothing. I grabbed a homemade brew (I can drink - protein, glucose, carbohydrate, and potassium) and did something I rarely do - turned on the TV and watched a movie.
At the end of the movie I realized - I felt better. No, I still don't have my balance, still can't chew, still have pain and tremors - but the chaos is quiet. This is bad. I realized I am messed up even more than I realized. The source of my only true angst is this chaos in my head that takes away my concentration, my memory, my speech. Today I realized, I have to stop thinking. Just stop.
When I stop trying to figure everything out, I feel better. This sounds elementary - try to find space in this squeezed together reno household to meditate again? That might be an answer, or might be a scarier place - not sure. Or just forget it all? I'm close to that. The bills needed done last Friday - it's - um - Tuesday (looked at the calendar) - nope, still can't figure them out. My family doc says I should get a power of attorney so hubby or our kids can do the bills. No way. I see what my poor hubby goes through trying to take care of this stuff for his aging father. I never want to do that to my kids.
So, what is the answer? Well, I need a lot of answers - the first is the title of the blog. But, I don't know what to do about the loss of concentration, memory, speech and the chaos of every day in my head. Yesterday, when we were in the waiting room waiting to be called for my procedure, I overheard a man tell his son, "You don't want to have damage to your brain - what do you want to have to sit around drooling, doing nothing but watching soap operas all day?" I wanted to hit him. In my experience, the look I threw him should suffice. But, maybe he was right - maybe that is the only thing to appease your tired, chaotic brain when it no longer works for you....
I had a lip biopsy for the doc at Hopkins yesterday, to prove or disprove that I might have Sjogren's syndrome in addition to, or instead of MS. I loved the doc who did this - he did his best to convince me this is an unnecessary procedure. He didn't have to convince me, I was totally on board and would like to have told him, okay, I pass. Especially when he mentioned there is a 40-60% false negative for this test. Hmmmmm ....
But, given my loyalty to this doc, I allowed my bottom lip to be cut open so they could harvest a few salivary glands for examination. I haven't eaten much in the way of solid food since. My tarot cards said this is a bad idea - unfortunately, I didn't consult them until AFTER the procedure. My bad.
I had planned, for the second week in a row, on visiting the local Farmer's Market (one of the many we are blessed to have in our area) and pick up some fruit for us, some snacks and dinner for our daughter, and maybe dinner for us. It is an absolutely horrid day here - steady, heavy rain, fog, damp, cold - a really bad day anyone with an autoimmune disorder would understand. Even when I wasn't having debilitating symptoms over the last 12 years, a really cold, damp, dreary day would always knock me back.
Dear hubby said NO. Not only was the weather bad, but the market I wanted to go to was so much walking, even to get from the car to the parking lot. I lost my balance yesterday afternoon. It's never good, but really, I left it somewhere on the hospital campus - it hit suddenly. It's still not back, even to my new normal levels. So, we stayed home.
I tried several things today from my chaotic brain cloud - none of them turned out well. On top of that, I'm hungry, but can't really eat. I gave up. I did what my sweetheart has been telling me to do for weeks - nothing. I grabbed a homemade brew (I can drink - protein, glucose, carbohydrate, and potassium) and did something I rarely do - turned on the TV and watched a movie.
At the end of the movie I realized - I felt better. No, I still don't have my balance, still can't chew, still have pain and tremors - but the chaos is quiet. This is bad. I realized I am messed up even more than I realized. The source of my only true angst is this chaos in my head that takes away my concentration, my memory, my speech. Today I realized, I have to stop thinking. Just stop.
When I stop trying to figure everything out, I feel better. This sounds elementary - try to find space in this squeezed together reno household to meditate again? That might be an answer, or might be a scarier place - not sure. Or just forget it all? I'm close to that. The bills needed done last Friday - it's - um - Tuesday (looked at the calendar) - nope, still can't figure them out. My family doc says I should get a power of attorney so hubby or our kids can do the bills. No way. I see what my poor hubby goes through trying to take care of this stuff for his aging father. I never want to do that to my kids.
So, what is the answer? Well, I need a lot of answers - the first is the title of the blog. But, I don't know what to do about the loss of concentration, memory, speech and the chaos of every day in my head. Yesterday, when we were in the waiting room waiting to be called for my procedure, I overheard a man tell his son, "You don't want to have damage to your brain - what do you want to have to sit around drooling, doing nothing but watching soap operas all day?" I wanted to hit him. In my experience, the look I threw him should suffice. But, maybe he was right - maybe that is the only thing to appease your tired, chaotic brain when it no longer works for you....
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