Sunday, January 08, 2006
Me, me, me, meeeeeee......
FINALLY, I feel I can take the time to post all I've been up to for the past month or so. I've been giving bits and pieces here and in e-mails, so please forgive any repeat info because I don't know what I've said to whom. And I'll probably leave stuff out too, because I've been doing a lot of that lately too.
ANYHOO, I think where I left off was about December 8th or so when I found out that my beloved (ha!) long-term disability insurance company was going to blow me off for yet another month, leaving me with no funds for Christmas gifts. I racked my frazzled brain for something that could be done quickly, and came up with two things: homemade fudge, and recipe books. I'd seen on the "Oprah" show Rachael Ray's recipe for fudge made with chocolate chips made into a wreath shape and decorated with "holly" made from candied cherries. I tested it out and found it quite good, so I made two batches in round Christmas tins. For recipe books, I borrowed an idea from Ducky: I got 4x6 photo albums with clear sleeves where the photos go, and instead of photos, I put 4x6 pages containing recipes I'd used from various sources. I made four of these albums full of recipes. Basically, I created a template recipe page on the computer and duplicated it as many times as necessary, and whenever I found a recipe online, I only had to cut and paste it. Only problem with doing this stuff last minute was the pain and fatigue factor. I had problems with my hands cutting out so many recipe pages and stirring the fudge, so I had to drag the projects out so that I was only working on one gift per day. That cut it really close to Christmas, and then I still needed to wrap things. So Dan had to cut out one batch of recipe pages and help me wrap everything at the end. Oh, and then the Thursday before Christmas, my meds made me so fuzzy headed that I thought I might burn the house down if I cooked, so I had to call my friend and have her come over and help me with the fudge. So there's one of the reasons I didn't post much before the holidays.
While I was caught up in my projects and such, I was also trying out new meds. Woo hoo. Since it was determined once and for all that I could not tolerate narcotics because of my gastroparesis, my primary care doc had me try something new: Lyrica, which is for nerve pain. The good news is that yes, it did rid me of most of my nerve pain AND it didn't mess with my stomach. The downside, though, is that it made me dizzy, clumsy and even more fibro-fogged than usual. I was told these side effects would be temporary. WRONG! I've been on it for a month now, and it still does this to me. And if this wasn't tough enough to adjust to, I discovered that Lyrica doesn't interact well with Lunesta, the medication I was on to help me sleep. So I ended up starting Klonopin at bedtime, which was supposed to help my periodic limb movement disorder. Good news: no more twitching! First time ever with a med. Awful news: the sedating effects of this med do NOT wear off! I'm serious. If I take it at midnight, I'll still feel sedated and sound like I'm drunk until about 5pm! I tried a lower dose, and the twitching returned. So now I get to decide which is better: less pain and twitching but more vertigo and cognitive dysfunction OR being more in control of my cognition and balance but in unbearable pain. I hate not feeling in control of my brain! It affects my talking, my writing, my ability to follow a movie plot. And I certainly can't drive this way! And that would make me 100 percent dependent on Dan taking me places. As if he didn't have enough on his plate already.
On the 20th, I went to the pain management specialist about my lower back problems. After an exam, it was determined that the main problem area was the right SI joint, and we agreed to try injections to see if a reduction in inflammation would make the area stop spasming. This was to be done in an out-patient setting, so I set up an appointment with the surgery center for January 4th. I believe I did post the results of that.
I got a suprising piece of mail on December 21st: a letter from the Disability Determination Services office telling me they'd made an appointment to see one of their doctors on the 29th, while Dan would be visiting family in South Dakota. These are referred to as a CE, or consultative examination. These are usually the kiss of death for a Social Security claim. I called a friend in a panic to see if she could somehow take me to this exam since Dan wouldn't be around. Bless her heart, she had to re-arrange her whole work schedule to manage this. I did post the details of the exam a few days back, so I won't repeat it here, but I will say that I think it was a complete waste of time and probably did nothing to help my Social Security claim.
Also on the 21st, I got a call from my aunt asking me to come to her house on Christmas day to meet with the extended family. But I declined because I didn't think I'd be able to drive myself across town and back. Turns out everyone went this time, so I really missed out. It's probably for the best that I didn't go and wear myself even more, though.
Since Dan was flying to South Dakota on Christmas Eve, we went to my dad's late that morning to exchange gifts and have an early dinner. My stepbrother, his wife and their baby were there, as were my sister and my brother-in-law. I took lots of pix of my niece opening and examining her gifts. I did indulge in a store-bought gift for her: I saw this absolutely huge, ultra soft black and white stuffed puppy at the store and couldn't leave without it! It was large enough for my niece to take a nap on. I received some DVDs, some Harry Potter books and some gift cards, all of which were greatly appreciated. We had a nice meal of both turkey and ham. I brought the crustless pumpkin pie, but we had to leave before anyone had room to eat any. We did manage to squeeze in one quick board game before I drove Dan to the airport (I'd skipped the Klonopin the night before so I'd be safe at the wheel). I'd been asked if I wanted to go back to Dad's house after, but I was already fading, so I just went home and took a nap. After three hours of sleep, I then went to my church, which is just a short drive from the house. It was packed, but I enjoyed all the festivities. Made the whole holiday much more meaningful.
On Christmas Day, I went back to my church, this time with my friend, for some informal singing of Christmas carols and drinking of hot chocolate/coffee. Then we went back to my house, where I had a quarter bone-in spiral honey ham waiting to be heated. It was only five pounds, so it took less than an hour to prepare. In keeping with my dietary limits, the only other things we had to eat were mashed potatoes and cranberry sauce. I thought it was nice, though: no worries about overeating when there are fewer foods on the table. And then while my friend went home for a bit to check up on her critters, I fell asleep on the couch for my usual two hours. No way I could have done that at my aunt's house with some 20 people running around. After my friend returned, I felt perky enough to play 1980's Trivial Pursuit, and to my complete surprise, I won.
Now, I had planned that the last week of the year was going to be one of rest for me since Dan was gone. I'd purposely scheduled no appointments, and didn't have have aquacise classes (they always do maintenance on the pool that week). But the CE put a monkey wrench in things, and then it got even more complicated. On the 27th, I checked the status of my claim with the long-term disability insurance company. I still wasn't even listed on the website as having an account, and the automated system on the phone only said there was no information available on my claim. So I got a hold of an operator, who told me that since they got new medical records on the 19th, they wanted to extend their analysis of my claim for ANOTHER month. I told them in no uncertain terms that taking five months to analyze a claim was ridiculous. The reply was that my claim was complicated. I was fed up, so I called a lawyer recommended to me by the Social Security attorney I had talked to awhile back. I found out that my particular LTD insurance company had lost a lawsuit and had to re-open some 200,000 claims! So some people with new claims were getting letters stating they might not get processed for up to two YEARS! So really, all I could do was wait for the company to make the next move and hope I wouldn't run out of savings before then.
So I was quite surprised when, the very next day, my benefits co-ordinator called and announced that they wanted me to undergo a functional capacity exam! Their doctor had also analyzed my neuropsyche exam from October 2004 and said the findings were insignificant, but because my rheumatologist stated that I had declined since that exam, they wanted me to do a new one! The only good news in all this was that while I was being tested, they had to begin paying me benefits under "Reservation of Rights". That means a temporary award which they can demand back if they decide you've been malingering. I asked who would be conducting the functional capacity test and was told it would be supervised by a physical therapist. Now, I've had some awful experiences with PTs, so I was less than thrilled with that news. I was also informed that since the insurance company was paying for the exams, they would decide who performed them. Well, that just smacks of impartiality, doesn't it?? (this is me being facetious) So, as soon as I was off the phone with the benefits lady, I called the lawyer again and asked if I had any recourse in this situation. I was informed that while I do have to take the tests, I can attempt to get the company to agree to an impartial person to administer the exams. He gave me the names of both a physical therapist for the functional capacity test and a psychologist for the neuropsyche exam. I called both parties and found them to be quite friendly and understanding of my situation. The psychologist had extensive experience in testing fibromyalgia patients. I then called my rheumatologist's office and asked if he would send a script to the insurance company for the functional capacity exam with the name of the physical therapist I had selected on it.
The next day was the CE for Social Security, and of course the benefits coordinator called while I was out. So did the surgery center needing to go over my meds and other pre-procedure stuff. I ended up spending most of Friday afternoon on the phone. One place I had to call was my new medical insurance company because a few weeks back, we received Dan's new card in the mail but not mine. When I inquired about it, I found out I wasn't even listed as being eligible! Turns out his employer "forgot" to send the information to them. So I was told to call HR for Dan's employer. Naturally, as it was the last business day of the year, HR had taken the day off. That finally got resolved the morning before I had the injections done. Nothing like a little extra drama to start out the new year. When I got a hold of the benefits coordinator on the 30th, she said she'd gotten the script from the rheumatologist and would send the physical therapist "suggestion" along to the proper department. I asked if I could also suggest a practitioner for the neuropsyche exam, but she said that absolutely was not allowed. She added that I would be notified of my appointments by Federal Express (I guess so I'll have to sign for it).
The next day was of course New Year's Eve, and I was more than ready to party, or at least get distracted from the week from hell. I picked Dan up at the airport about 4:30, and our friend came by about 6pm. We had tuna casserole (weird, I know, but there was very little left in the pantry to choose from) and then played Rumikub to the accompaniament of '80's and '90's music. Later, we snacked on fancy lowfat cheeses and crackers (mine were gluten free of course), and Dan had beer and I had wine. Yes, wine. Red wine that made me feel totally silly after one glass, but I hadn't had any in probably five years, so why not? We toasted the new year and played the TV edition of Trivial Pursuit. I think Dan won.
I gots lots more to say, but my hands simply won't allow me to type anymore tonight, even though I've taken lots of breaks and stuff. So I'll chatter more later......
ANYHOO, I think where I left off was about December 8th or so when I found out that my beloved (ha!) long-term disability insurance company was going to blow me off for yet another month, leaving me with no funds for Christmas gifts. I racked my frazzled brain for something that could be done quickly, and came up with two things: homemade fudge, and recipe books. I'd seen on the "Oprah" show Rachael Ray's recipe for fudge made with chocolate chips made into a wreath shape and decorated with "holly" made from candied cherries. I tested it out and found it quite good, so I made two batches in round Christmas tins. For recipe books, I borrowed an idea from Ducky: I got 4x6 photo albums with clear sleeves where the photos go, and instead of photos, I put 4x6 pages containing recipes I'd used from various sources. I made four of these albums full of recipes. Basically, I created a template recipe page on the computer and duplicated it as many times as necessary, and whenever I found a recipe online, I only had to cut and paste it. Only problem with doing this stuff last minute was the pain and fatigue factor. I had problems with my hands cutting out so many recipe pages and stirring the fudge, so I had to drag the projects out so that I was only working on one gift per day. That cut it really close to Christmas, and then I still needed to wrap things. So Dan had to cut out one batch of recipe pages and help me wrap everything at the end. Oh, and then the Thursday before Christmas, my meds made me so fuzzy headed that I thought I might burn the house down if I cooked, so I had to call my friend and have her come over and help me with the fudge. So there's one of the reasons I didn't post much before the holidays.
While I was caught up in my projects and such, I was also trying out new meds. Woo hoo. Since it was determined once and for all that I could not tolerate narcotics because of my gastroparesis, my primary care doc had me try something new: Lyrica, which is for nerve pain. The good news is that yes, it did rid me of most of my nerve pain AND it didn't mess with my stomach. The downside, though, is that it made me dizzy, clumsy and even more fibro-fogged than usual. I was told these side effects would be temporary. WRONG! I've been on it for a month now, and it still does this to me. And if this wasn't tough enough to adjust to, I discovered that Lyrica doesn't interact well with Lunesta, the medication I was on to help me sleep. So I ended up starting Klonopin at bedtime, which was supposed to help my periodic limb movement disorder. Good news: no more twitching! First time ever with a med. Awful news: the sedating effects of this med do NOT wear off! I'm serious. If I take it at midnight, I'll still feel sedated and sound like I'm drunk until about 5pm! I tried a lower dose, and the twitching returned. So now I get to decide which is better: less pain and twitching but more vertigo and cognitive dysfunction OR being more in control of my cognition and balance but in unbearable pain. I hate not feeling in control of my brain! It affects my talking, my writing, my ability to follow a movie plot. And I certainly can't drive this way! And that would make me 100 percent dependent on Dan taking me places. As if he didn't have enough on his plate already.
On the 20th, I went to the pain management specialist about my lower back problems. After an exam, it was determined that the main problem area was the right SI joint, and we agreed to try injections to see if a reduction in inflammation would make the area stop spasming. This was to be done in an out-patient setting, so I set up an appointment with the surgery center for January 4th. I believe I did post the results of that.
I got a suprising piece of mail on December 21st: a letter from the Disability Determination Services office telling me they'd made an appointment to see one of their doctors on the 29th, while Dan would be visiting family in South Dakota. These are referred to as a CE, or consultative examination. These are usually the kiss of death for a Social Security claim. I called a friend in a panic to see if she could somehow take me to this exam since Dan wouldn't be around. Bless her heart, she had to re-arrange her whole work schedule to manage this. I did post the details of the exam a few days back, so I won't repeat it here, but I will say that I think it was a complete waste of time and probably did nothing to help my Social Security claim.
Also on the 21st, I got a call from my aunt asking me to come to her house on Christmas day to meet with the extended family. But I declined because I didn't think I'd be able to drive myself across town and back. Turns out everyone went this time, so I really missed out. It's probably for the best that I didn't go and wear myself even more, though.
Since Dan was flying to South Dakota on Christmas Eve, we went to my dad's late that morning to exchange gifts and have an early dinner. My stepbrother, his wife and their baby were there, as were my sister and my brother-in-law. I took lots of pix of my niece opening and examining her gifts. I did indulge in a store-bought gift for her: I saw this absolutely huge, ultra soft black and white stuffed puppy at the store and couldn't leave without it! It was large enough for my niece to take a nap on. I received some DVDs, some Harry Potter books and some gift cards, all of which were greatly appreciated. We had a nice meal of both turkey and ham. I brought the crustless pumpkin pie, but we had to leave before anyone had room to eat any. We did manage to squeeze in one quick board game before I drove Dan to the airport (I'd skipped the Klonopin the night before so I'd be safe at the wheel). I'd been asked if I wanted to go back to Dad's house after, but I was already fading, so I just went home and took a nap. After three hours of sleep, I then went to my church, which is just a short drive from the house. It was packed, but I enjoyed all the festivities. Made the whole holiday much more meaningful.
On Christmas Day, I went back to my church, this time with my friend, for some informal singing of Christmas carols and drinking of hot chocolate/coffee. Then we went back to my house, where I had a quarter bone-in spiral honey ham waiting to be heated. It was only five pounds, so it took less than an hour to prepare. In keeping with my dietary limits, the only other things we had to eat were mashed potatoes and cranberry sauce. I thought it was nice, though: no worries about overeating when there are fewer foods on the table. And then while my friend went home for a bit to check up on her critters, I fell asleep on the couch for my usual two hours. No way I could have done that at my aunt's house with some 20 people running around. After my friend returned, I felt perky enough to play 1980's Trivial Pursuit, and to my complete surprise, I won.
Now, I had planned that the last week of the year was going to be one of rest for me since Dan was gone. I'd purposely scheduled no appointments, and didn't have have aquacise classes (they always do maintenance on the pool that week). But the CE put a monkey wrench in things, and then it got even more complicated. On the 27th, I checked the status of my claim with the long-term disability insurance company. I still wasn't even listed on the website as having an account, and the automated system on the phone only said there was no information available on my claim. So I got a hold of an operator, who told me that since they got new medical records on the 19th, they wanted to extend their analysis of my claim for ANOTHER month. I told them in no uncertain terms that taking five months to analyze a claim was ridiculous. The reply was that my claim was complicated. I was fed up, so I called a lawyer recommended to me by the Social Security attorney I had talked to awhile back. I found out that my particular LTD insurance company had lost a lawsuit and had to re-open some 200,000 claims! So some people with new claims were getting letters stating they might not get processed for up to two YEARS! So really, all I could do was wait for the company to make the next move and hope I wouldn't run out of savings before then.
So I was quite surprised when, the very next day, my benefits co-ordinator called and announced that they wanted me to undergo a functional capacity exam! Their doctor had also analyzed my neuropsyche exam from October 2004 and said the findings were insignificant, but because my rheumatologist stated that I had declined since that exam, they wanted me to do a new one! The only good news in all this was that while I was being tested, they had to begin paying me benefits under "Reservation of Rights". That means a temporary award which they can demand back if they decide you've been malingering. I asked who would be conducting the functional capacity test and was told it would be supervised by a physical therapist. Now, I've had some awful experiences with PTs, so I was less than thrilled with that news. I was also informed that since the insurance company was paying for the exams, they would decide who performed them. Well, that just smacks of impartiality, doesn't it?? (this is me being facetious) So, as soon as I was off the phone with the benefits lady, I called the lawyer again and asked if I had any recourse in this situation. I was informed that while I do have to take the tests, I can attempt to get the company to agree to an impartial person to administer the exams. He gave me the names of both a physical therapist for the functional capacity test and a psychologist for the neuropsyche exam. I called both parties and found them to be quite friendly and understanding of my situation. The psychologist had extensive experience in testing fibromyalgia patients. I then called my rheumatologist's office and asked if he would send a script to the insurance company for the functional capacity exam with the name of the physical therapist I had selected on it.
The next day was the CE for Social Security, and of course the benefits coordinator called while I was out. So did the surgery center needing to go over my meds and other pre-procedure stuff. I ended up spending most of Friday afternoon on the phone. One place I had to call was my new medical insurance company because a few weeks back, we received Dan's new card in the mail but not mine. When I inquired about it, I found out I wasn't even listed as being eligible! Turns out his employer "forgot" to send the information to them. So I was told to call HR for Dan's employer. Naturally, as it was the last business day of the year, HR had taken the day off. That finally got resolved the morning before I had the injections done. Nothing like a little extra drama to start out the new year. When I got a hold of the benefits coordinator on the 30th, she said she'd gotten the script from the rheumatologist and would send the physical therapist "suggestion" along to the proper department. I asked if I could also suggest a practitioner for the neuropsyche exam, but she said that absolutely was not allowed. She added that I would be notified of my appointments by Federal Express (I guess so I'll have to sign for it).
The next day was of course New Year's Eve, and I was more than ready to party, or at least get distracted from the week from hell. I picked Dan up at the airport about 4:30, and our friend came by about 6pm. We had tuna casserole (weird, I know, but there was very little left in the pantry to choose from) and then played Rumikub to the accompaniament of '80's and '90's music. Later, we snacked on fancy lowfat cheeses and crackers (mine were gluten free of course), and Dan had beer and I had wine. Yes, wine. Red wine that made me feel totally silly after one glass, but I hadn't had any in probably five years, so why not? We toasted the new year and played the TV edition of Trivial Pursuit. I think Dan won.
I gots lots more to say, but my hands simply won't allow me to type anymore tonight, even though I've taken lots of breaks and stuff. So I'll chatter more later......
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