I went to see my sleep doctor the other day as I do every six months to keep up on things.
I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.
I had no idea - this was almost 2 years ago. I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.
Apparently, night terrors are not something the patient remembers and occur in deep sleep.
Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often. I had been having them nightly or almost nightly for years. I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.
SPH - basically occurs when you become conscious during REM sleep. See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc). So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling. You know you are in bed and what's around you but you can't move and start struggling to wake up. With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified. I have had someone tell me they have seen two figures before so could be different. It's a faceless figure and it is terrifying. I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up. I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept.
Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off. Needless to say - terrifying and then I would just try to stay awake.
As I said, this can happen to anyone. But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy. What? I thought there is no way I have another disorder. She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep. But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital. I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband. But I did not fall asleep in my soup or while driving, etc. It wasn't like the movies - and she said rarely is. Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy. They actually couldn't determine if I had cataplexy unless an event occurred. Ruling out my NCS as Cataplexy episodes.
The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc. I thought, I will never be able to sleep like this! But I did, and they recorded all my data. ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in. The other is how long once you fall asleep it takes you to go into REM.
Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking. Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this. I didn't know that you really don't spend all that much time in REM. Except for Narcolepsy - and me. During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.
As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM. In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes. That's a diagnosis.
When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms. I just never added them up? I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc. I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.
As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did. He had teased me about it often but that was teasing. Turns out, I have narcolepsy.
There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep. The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it.
I still have vivid dreams but am so relieved to not be scared to go to sleep. I am still tired all the time, fall asleep when I don't mean to, etc.
This is the best we can do right now. They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also. Due to my past, etc. It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug. But, it is possible if I am woken up I could do anything and not have memory. That is terrifying to me.
I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it. This is different than that in some way as that is available in all pharmacies.
So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication. I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep. I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.
Makes sense. Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile. I'm tired but meditation helps that a lot. Really a lot, when I can do well. I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy. But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly. They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.
So, I guess I wanted to talk about my narcolepsy and give some support for others in that state. Express my fear of sleep due to the "night terrors" which are not night terrors. And show how multiple chronic illnesses can compound on each other. Because of my narcolepsy I have more trouble with my chronic intractable migraine. The pain, constant pain, that I tend to put first and foremost - because it screams the loudest. Especially now that I'm not screaming in my sleep :)
Best wishes to all and take care of yourselves!
Showing posts with label yoga. Show all posts
Showing posts with label yoga. Show all posts
Friday, October 22, 2010
Tuesday, June 8, 2010
Why am I still awake?
So, it's 5:10 am and I have been awake all day and all night. Not for work since I've been put on short term disability to rest and rest and rest.
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
Saturday, January 30, 2010
Getting older
Doesn't it just bug you when little things remind you that you are getting older? Me too! I am happy thinking of my age as a hypothetical - not something I want to think about and I can just go with what age I feel like. But, when something reminds me of my age and that I'm getting older, then I start thinking about money and if my health problems will get worse, and what other health issues may arise, etc. As well as thinking, I don't want to get older.
Reminder the first recently - my 21 (YES 21) year old son just moved out to his own apartment where I co-signed the lease. Move out? I can't pretend he's younger and so am I if he moves out on his own. Plus I miss him and miss having my baby boy - so long ago that he was 6 and dressed as Batman or 10 in Tai Kwon Do lessons on my old home videos. He's grown up means I'm grown up even more!
Reminder the second recently - my youngest son, my baby, is turning 17 (YES 17) on Monday. Starting college a year and a half from now! I miss my young children. Yes, I know the purpose is for them to grow up and realize their dreams and be independent and I want that for them. But, how did it happen so quickly? It was just yesterday he was 4 and convinced that St. Patrick's day (his name is Patrick) was a holiday that was created just for him and wouldn't be swayed (I folded and bought him a present, I kept explaining that St. Patrick Day was named for a saint, but he responded "yes, I am really good" - gotta give in to that). So, I work on finances for his college tuition coming up and worry if he'll be happy and make good decisions.
Funny story - my 21 year old said when he came back after having been moved out a week that he thought my migraines would improve after he moved out? I never knew he thought he was a factor in that?
So, I am getting older and am budgeting savings, retirement, debt, etc. As a CPA, I am great with a spreadsheet and budgets and actually enjoy working with them - better with someone else's numbers - so not all that bad and I'm in bad shape due to health costs on me but not as bad off as others are so I have to be thankful.
How much longer till I cannot work? Well, last week, my neurologist said that if we don't see improvement then sooner or later they will require I go on disability and reduce my work to half time or less or none. So, that's a worry.
Then, I think maybe age will improve my conditions? Some women after menopause see an improvement in their migraines? But, I know too many who don't. And then, my neuro talks about the white matter building in my brain from constant pain and increased risk of stroke as it continues. Perhaps that means I need to save quicker and be more efficient to retire sooner to lower the risk? Since I can't seem to stop the pain and it's primarily caused by stress.
Then, there's the fact that due to my disability, my career growth has been stunted. I do well where I am but the company won't promote me or grow my career so my income is going to flatten. Change jobs? Change their minds? Possibilities, but I'll worry about that later - just not too much later because the clock is ticking.
One thing I do know, every woman in my life close to me - friends and family - say the 40s are/were the best years of their life. So, I am not going to be afraid of the number. I adore my friends and family and my incredible husband who takes such good care of me - and me of him financially (for now) since he's an artist and I'm the breadwinner.
I hate my pain but I am happy with my life and I want to remember my life and events not being taken over by the pain. That's the task, changing that - since right now the pain is in control.
I still have good times. A great memory from recent is last November seeing 75 year old Leonard Cohen in concert just after our wedding anniversary (one of his songs was our first dance song). Seeing one of the greatest poets and writers of our time perform flawlessly and incredibly and skip off stage for 4 (YES 4) encores. so, I have to say, age doesn't stop everyone. Love you, Leonard Cohen - You are The Man.
I do want to talk more about my IV therapy and other things that I think are going to help, but want to see how they play out first.
Love and hope for pain free days for you as always,
Elizabeth
Reminder the first recently - my 21 (YES 21) year old son just moved out to his own apartment where I co-signed the lease. Move out? I can't pretend he's younger and so am I if he moves out on his own. Plus I miss him and miss having my baby boy - so long ago that he was 6 and dressed as Batman or 10 in Tai Kwon Do lessons on my old home videos. He's grown up means I'm grown up even more!
Reminder the second recently - my youngest son, my baby, is turning 17 (YES 17) on Monday. Starting college a year and a half from now! I miss my young children. Yes, I know the purpose is for them to grow up and realize their dreams and be independent and I want that for them. But, how did it happen so quickly? It was just yesterday he was 4 and convinced that St. Patrick's day (his name is Patrick) was a holiday that was created just for him and wouldn't be swayed (I folded and bought him a present, I kept explaining that St. Patrick Day was named for a saint, but he responded "yes, I am really good" - gotta give in to that). So, I work on finances for his college tuition coming up and worry if he'll be happy and make good decisions.
Funny story - my 21 year old said when he came back after having been moved out a week that he thought my migraines would improve after he moved out? I never knew he thought he was a factor in that?
So, I am getting older and am budgeting savings, retirement, debt, etc. As a CPA, I am great with a spreadsheet and budgets and actually enjoy working with them - better with someone else's numbers - so not all that bad and I'm in bad shape due to health costs on me but not as bad off as others are so I have to be thankful.
How much longer till I cannot work? Well, last week, my neurologist said that if we don't see improvement then sooner or later they will require I go on disability and reduce my work to half time or less or none. So, that's a worry.
Then, I think maybe age will improve my conditions? Some women after menopause see an improvement in their migraines? But, I know too many who don't. And then, my neuro talks about the white matter building in my brain from constant pain and increased risk of stroke as it continues. Perhaps that means I need to save quicker and be more efficient to retire sooner to lower the risk? Since I can't seem to stop the pain and it's primarily caused by stress.
Then, there's the fact that due to my disability, my career growth has been stunted. I do well where I am but the company won't promote me or grow my career so my income is going to flatten. Change jobs? Change their minds? Possibilities, but I'll worry about that later - just not too much later because the clock is ticking.
One thing I do know, every woman in my life close to me - friends and family - say the 40s are/were the best years of their life. So, I am not going to be afraid of the number. I adore my friends and family and my incredible husband who takes such good care of me - and me of him financially (for now) since he's an artist and I'm the breadwinner.
I hate my pain but I am happy with my life and I want to remember my life and events not being taken over by the pain. That's the task, changing that - since right now the pain is in control.
I still have good times. A great memory from recent is last November seeing 75 year old Leonard Cohen in concert just after our wedding anniversary (one of his songs was our first dance song). Seeing one of the greatest poets and writers of our time perform flawlessly and incredibly and skip off stage for 4 (YES 4) encores. so, I have to say, age doesn't stop everyone. Love you, Leonard Cohen - You are The Man.
I do want to talk more about my IV therapy and other things that I think are going to help, but want to see how they play out first.
Love and hope for pain free days for you as always,
Elizabeth
Sunday, January 17, 2010
Awards Season
So, it's awards season for the movies of 2009. And I am way behind in seeing movies and being ready.
Backup - I love awards season and the awards shows. I know a lot of people don't care for them or think they don't make good picks, etc., but I think they are fun. Especially the Oscars. I don't always agree with their nominations or the choice for winners either, but still love to watch and discuss.
Every year since 2004, my friend and I have hosted an Oscar Party. It is so much fun to get ready for it as well as the party itself. We are both accountants and it's a time to be creative. We make a poster of the nominations in major categories including pictures of actors, directors both in character/job and as normal - it's neat sometimes to see the difference in character pictures vs their actual appearance - and give descriptions, how many times nominated and for what films, etc. We also make a poster board of every movie nominated in every category and give people stickers to mark what movies they've seen - we give a prize to the guest who has seen the most nominated films - some people come thinking they haven't seen many and then realize they've seen a lot more when they count other categories like song, sound, and other technical categories.
Then there's the display, for each movie nominated for best picture we do a food dish that relates to that movie in some way, a picture of the poster for the movie and also other displays/props that relate to the movie. To do this, you have to have seen the movie! This year they will have 10 rather than 5 best picture nominees which will be a huge jump and a lot more work - we've thought about giving certain guests the chance to bring their own food/display for 5 of the nominees so we only have to continue with 5 ourselves. We also do the ballot game, having everyone fill out ballots and then give prizes for most picks right and sometimes a prize for least picks right. I think we are eliminating that one this year because we found some guests were trying to lose and that's a waste of the money we spend on the prizes.
Anyway, my point is that by this time I have already in the fall made a list of movies I think have a chance of nominations and seen as many on the list as they come out and then when the other awards shows nominations come out, adjust my list as necessary and the movies I need to see and have some ideas for props/food/display for what I think may be a best picture nomination.
Due to my migraine disability being so bad lately, I am nowhere - not even step one, nor have I seen very many movies. I love this time of year partly because of what I do to get ready for it and because it causes me to see movies I may have passed up seeing otherwise and then end up being a movie I love so I am so happy that the awards season got me to see the movie - even if it didn't end up with a nomination.
I have seen a few movies that are being talked about, and I need to feel grateful for that. I can't help that going to the movies is more painful than it used to be or causes me to be worse off for a while painwise. I need to be patting myself on the back for what I can do and not beating myself up for what I can't do. Sure, I usually am at the top of the list, if not top, of having seen the most movies (not that I get the award, it goes to a guest) but that just won't be this year and I have to get over it.
I am thankful my son and I saw Avatar on Christmas Eve. It's nominated for a Golden Globe as well as Inglorious Bastards which I saw in September. And Hurt Locker is on InDemand so I can watch here at home. So, I am on my way a little.
I am going to look forward to the awards shows and our Oscar Party and not feel down about my situation being different than other years.
One thing though - we switch every year whose house we have it at and this is my year - have to enlist hubby's help in getting the house ready and really cleaned up for it. Don't have the energy I used to and have to take lots of breaks. But, I know this so I will start earlier than usual and take breaks and ask for help.
Good luck to all the nominees at the Golden Globes tomorrow night (or tonight now - its 2:20 in the am).
I have trouble sleeping with the pain and so my sleep schedule is a bit awry.
I will not let my migraine disability control me and my ability to have this enjoyment!
Backup - I love awards season and the awards shows. I know a lot of people don't care for them or think they don't make good picks, etc., but I think they are fun. Especially the Oscars. I don't always agree with their nominations or the choice for winners either, but still love to watch and discuss.
Every year since 2004, my friend and I have hosted an Oscar Party. It is so much fun to get ready for it as well as the party itself. We are both accountants and it's a time to be creative. We make a poster of the nominations in major categories including pictures of actors, directors both in character/job and as normal - it's neat sometimes to see the difference in character pictures vs their actual appearance - and give descriptions, how many times nominated and for what films, etc. We also make a poster board of every movie nominated in every category and give people stickers to mark what movies they've seen - we give a prize to the guest who has seen the most nominated films - some people come thinking they haven't seen many and then realize they've seen a lot more when they count other categories like song, sound, and other technical categories.
Then there's the display, for each movie nominated for best picture we do a food dish that relates to that movie in some way, a picture of the poster for the movie and also other displays/props that relate to the movie. To do this, you have to have seen the movie! This year they will have 10 rather than 5 best picture nominees which will be a huge jump and a lot more work - we've thought about giving certain guests the chance to bring their own food/display for 5 of the nominees so we only have to continue with 5 ourselves. We also do the ballot game, having everyone fill out ballots and then give prizes for most picks right and sometimes a prize for least picks right. I think we are eliminating that one this year because we found some guests were trying to lose and that's a waste of the money we spend on the prizes.
Anyway, my point is that by this time I have already in the fall made a list of movies I think have a chance of nominations and seen as many on the list as they come out and then when the other awards shows nominations come out, adjust my list as necessary and the movies I need to see and have some ideas for props/food/display for what I think may be a best picture nomination.
Due to my migraine disability being so bad lately, I am nowhere - not even step one, nor have I seen very many movies. I love this time of year partly because of what I do to get ready for it and because it causes me to see movies I may have passed up seeing otherwise and then end up being a movie I love so I am so happy that the awards season got me to see the movie - even if it didn't end up with a nomination.
I have seen a few movies that are being talked about, and I need to feel grateful for that. I can't help that going to the movies is more painful than it used to be or causes me to be worse off for a while painwise. I need to be patting myself on the back for what I can do and not beating myself up for what I can't do. Sure, I usually am at the top of the list, if not top, of having seen the most movies (not that I get the award, it goes to a guest) but that just won't be this year and I have to get over it.
I am thankful my son and I saw Avatar on Christmas Eve. It's nominated for a Golden Globe as well as Inglorious Bastards which I saw in September. And Hurt Locker is on InDemand so I can watch here at home. So, I am on my way a little.
I am going to look forward to the awards shows and our Oscar Party and not feel down about my situation being different than other years.
One thing though - we switch every year whose house we have it at and this is my year - have to enlist hubby's help in getting the house ready and really cleaned up for it. Don't have the energy I used to and have to take lots of breaks. But, I know this so I will start earlier than usual and take breaks and ask for help.
Good luck to all the nominees at the Golden Globes tomorrow night (or tonight now - its 2:20 in the am).
I have trouble sleeping with the pain and so my sleep schedule is a bit awry.
I will not let my migraine disability control me and my ability to have this enjoyment!
Saturday, September 5, 2009
I miss my life
I remember dancing, parties, staying up late. I remember having a life.
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.
But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.
I miss being able to spend quality time with my husband. We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.
But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.
My life has changed, but wouldn't it have anyway as I grew older. Less parties, concerts, etc are bound to happen. Changing relationships with your children are bound to happen. Everyone makes mistakes and wishes something was different about their past or about their lives.
I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns. I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.
I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.
I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems. But, doesn't everyone have their ups and downs?
Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to. Solution? I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time. I've tried to not update them and they are hurt by that. Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things. Sounds like a good idea, I'll put it in motion. I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband. Make more of an effort. I have let things slip in our marriage that it's more about taking care of me then a two way street. Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way. He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $. I need to be there for him in other ways. Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc. Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time. He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up. Part of that is that he is my comfort. But, and I don't want to lie, I need to give some of that to him. I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while. I need to do this daily. I love him and he deserves a wife.
3) Learn to say no and get in control over the stress factors in my life. I seem to like the part of work where things have to get done and done now and it's really important and all that stress. But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first. I can work on challenging projects and have reduced stress if I take control rather than letting the work take control. I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health. I have to put me first. I need to set boundaries and protect them better than I have. I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more. I do a great job and that's good, great enough. I don't have to be perfect or solve everyone's problems. Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues. I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down. That will only in the end let myself down. I will put myself first - and remember the job I do is not life or death."
I will continually have to come back to my thoughts and re-commit to my plan over and over. I have to accept I will backslide and cannot blame myself for that. I am ill. I will cherish and pat myself on the back for the accomplishments I do make.
I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat. I will focus on what my life is and will be and the joys and wonders that are to come.
Here's to all of you out there dealing with your own illnesses and problems. We are stronger than we think we are.
Much love,
Elizabeth
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.
But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.
I miss being able to spend quality time with my husband. We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.
But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.
My life has changed, but wouldn't it have anyway as I grew older. Less parties, concerts, etc are bound to happen. Changing relationships with your children are bound to happen. Everyone makes mistakes and wishes something was different about their past or about their lives.
I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns. I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.
I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.
I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems. But, doesn't everyone have their ups and downs?
Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to. Solution? I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time. I've tried to not update them and they are hurt by that. Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things. Sounds like a good idea, I'll put it in motion. I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband. Make more of an effort. I have let things slip in our marriage that it's more about taking care of me then a two way street. Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way. He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $. I need to be there for him in other ways. Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc. Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time. He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up. Part of that is that he is my comfort. But, and I don't want to lie, I need to give some of that to him. I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while. I need to do this daily. I love him and he deserves a wife.
3) Learn to say no and get in control over the stress factors in my life. I seem to like the part of work where things have to get done and done now and it's really important and all that stress. But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first. I can work on challenging projects and have reduced stress if I take control rather than letting the work take control. I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health. I have to put me first. I need to set boundaries and protect them better than I have. I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more. I do a great job and that's good, great enough. I don't have to be perfect or solve everyone's problems. Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues. I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down. That will only in the end let myself down. I will put myself first - and remember the job I do is not life or death."
I will continually have to come back to my thoughts and re-commit to my plan over and over. I have to accept I will backslide and cannot blame myself for that. I am ill. I will cherish and pat myself on the back for the accomplishments I do make.
I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat. I will focus on what my life is and will be and the joys and wonders that are to come.
Here's to all of you out there dealing with your own illnesses and problems. We are stronger than we think we are.
Much love,
Elizabeth
Sunday, August 23, 2009
Babysitting nephews
Got to babysit my 2 yr old and 6 mo old nephews this morning. Getting down on the floor and playing is great for migraines. But they are gone now so no migraine quickly spiked back up and I still have a lot of work to do today.
Don't want to put picture of kids out there for the internet, but these you can't see his face - my hubby (a great guitarist) letting nephew play the guitar - so cute!
Don't want to put picture of kids out there for the internet, but these you can't see his face - my hubby (a great guitarist) letting nephew play the guitar - so cute!
It's the cheap guitar so he couldn't hurt it that I've had since I was 12 - not one of my husband's many expensive guitars. He asked if he could try playing it with his foot - that answer, although a cheap guitar was still no. His brother - 6 mo old was also so much fun!
Have to get back to work now and back to migraine - need to take a breathing and yoga break for that - but had to share the joy that I spent this morning that although in pain, I didn't care.
I missed it. My boys are 20 and 16 and I miss the days when they were young and we played on the floor and they explored with wonder. Of course, my boys are the greatest gift to me and my heart, soul and joy. But so are nephews!
Later,
Elizabeth
Thursday, August 20, 2009
I Must Learn Self Control and Get Back to Me
As per my last post, things are not going well for me lately with my migraine (I'm done with the s at the end it's just one very long single migraine).
As a tell tale sign that I am taking on too much and not enough time for myself, my migraine pain level has increased and other health problems have arisen.
Migraine has been hovering at 8/10 for awhile now - over a week - I usually get by with a 5 or 6 with daily spikes up higher, but lately it's all full blown.
My thyroid (I'm hypo) has gone out of whack. Although better in the last month.
My sleep problems have returned. I have SPH - Sleep Paralysis with Hallucinations - and had gone 2 months without an episode and they are back bugging me and my husband. They get worse with stress. In addition, had to go back to sleep doctor to get better medicine to keep me from falling asleep randomly - been diagnosed with light narcolepsy without cataplexy.
And another bad one, my NCS (vasovagal syncope) form of dysautonimia has gotten worse. I've had 4 episodes in the last 6 days. Last Thursday night I went out with my hubby because his grandma is ill and he needed me to so despite the pain I went out with friends which was good and fun but we came home and I had an episode. See my blog post on Dysautonomia posted earlier this month regarding my top 5 most embarrassing public fainting episodes. None of the past ones have been completely public nor knock any of those lower on the list. On Sunday to get over my being depressed lately over the pain, I went out to run some errands and nearly fainted at Whole Foods Market (note to self - do NOT go there on a weekend - too busy and crowded). Had to spend time in my car and rest and got back home safely. On Monday night I went in the kitchen to take some of my herbs, etc and ended up spending an hour on the kitchen floor because everytime I tried to get up it hit me again hard and I had to go back down to the ground (The kitchen lights tend to bother migraine but earlier in the evening had visited hubby's grandma in the nursing home and she was not doing well). Then last night, Wednesday, I take a shower and have to sit down in the shower and then finally made it out to lie down on the bathroom floor and towel myself off sitting down. Took awhile to get over and then slept for awhile and now woke up at 2:30 this morning waiting to go back to sleep but can't try to hard or will have SPH episode.
I know the stressers right now, migraine pain increased, health of hubby's grandma, a fight with my 16 year old and dealing with ex husband issues, and work (oh work, as a CPA and 9/15 on the horizon - the corporate extended due date - my work in international consulting iand review of international forms/filings/calculations is through the roof. I have so many projects in the air that I'm getting overwhelmed with it almost to the point of not being able to move. Ever get that? So, overwhelmed that your kind of frozen in place?
The migraine - I have to do more yoga and meditation. I'm doing the meds, the herbs, the acupuncture, the migraine massages, but am not spending enough time with just me and flowing with the pain to ease it. I know consciously I'm not which goes to my previous post of depression and feeling the need to punish myself. I have to slow down and take time for me. @TheDailyHerb RT a great article tonight - http://www.stevenaitchison.co.uk/blog/2009/08/17/9-ways-to-debug-your-mind/ - that really says a lot of what I need to do. I need to step back and evaluate and clear the junk and know myself. I need to meditate and get back to my yoga at the heart of it instead of going through the motions.
Family - Hubby's grandma is in a bad way and although I've gone through this with my own grandparents (2 of them) I see how hard it is on Hubby. and am trying to be there for him and her the best I can. This is a good thing but does add stress. This I won't change. My son and ex issues have to deal with my not trusting my ex and a guilt trip my son put on me about that. It hit me hard. But, as my brother told me, he's 16 and he's supposed to push my buttons to get his way. I have to stand my ground on my decisions on things and not let myself feel the guilt or not take on the guilt. Take it as it is, a 16 year old trying to get his way. My guilt comes from the fact that I am far away from him and miss him and want to give him the best of everything but there are limitations to that. (I have joint custody but he lives with his dad in a town an hour and a half away. Our other son lives with me.) I did not and never have abandoned him and provide for him well financially and emotionally. It isn't my fault he wants something I said no to and I don't have to accept the guilt trip. He's just being 16. And he's a good solid child who is wonderful - as is my other son and I am lucky to have them. These years are just hard until when I don't know - until they finish growing up and come to appreciate me again. It's natural to pull away from parents - that's how we mature - otherwise we'd stay at home forever. I know this intellectually but have allowed myself to feel and take on the guilt. I have to stop that now!
Work - well what can I say, it is that time of year, and I have this innate need to help and please people. I have to say no when it's too much. I took a pay cut last year to work less hours and I need to stick to that. I have to be honest with myself and others about how much I'm capable of. This is complicated by the fact that I am trying to get a promotion and raise so am trying to impress people. But, everyone I meet with says I have impressed them and continue to and they aren't looking for a superwoman. I have to remember it's work and I enjoy it but I can't let it ruin my health. I have to say no or at least later to some projects. I have to step back from it so it isn't overwhelming and take it in pieces - bite size chunks - and see it that way and schedule it out so I don't overwhelm myself. Again, I know this intellectually, but harder to put into practice. But I must for my health, for myself, for my family.
So, I know the health problems, I know the health risks, I know the causes, and I know the solutions. I must work harder to put my tools in my toolbox to better use. Take time for myself. Regenerate so I can do the other things. Relax and meditate and I will be a better mother, friend, and worker for it. I'll be able to focus more and do a better job as a result of focusing and saying no at the right times.
This is my task - take time out, say no, have self awareness and self control, meditate, get back to real yoga, take my own advise and flow with the pain. Use my breathing techniques, love myself, and get back to me. It will take time, it always does when I get off track, but I can do this.
This Too Shall Pass
Love to all,
Elizabeth
As a tell tale sign that I am taking on too much and not enough time for myself, my migraine pain level has increased and other health problems have arisen.
Migraine has been hovering at 8/10 for awhile now - over a week - I usually get by with a 5 or 6 with daily spikes up higher, but lately it's all full blown.
My thyroid (I'm hypo) has gone out of whack. Although better in the last month.
My sleep problems have returned. I have SPH - Sleep Paralysis with Hallucinations - and had gone 2 months without an episode and they are back bugging me and my husband. They get worse with stress. In addition, had to go back to sleep doctor to get better medicine to keep me from falling asleep randomly - been diagnosed with light narcolepsy without cataplexy.
And another bad one, my NCS (vasovagal syncope) form of dysautonimia has gotten worse. I've had 4 episodes in the last 6 days. Last Thursday night I went out with my hubby because his grandma is ill and he needed me to so despite the pain I went out with friends which was good and fun but we came home and I had an episode. See my blog post on Dysautonomia posted earlier this month regarding my top 5 most embarrassing public fainting episodes. None of the past ones have been completely public nor knock any of those lower on the list. On Sunday to get over my being depressed lately over the pain, I went out to run some errands and nearly fainted at Whole Foods Market (note to self - do NOT go there on a weekend - too busy and crowded). Had to spend time in my car and rest and got back home safely. On Monday night I went in the kitchen to take some of my herbs, etc and ended up spending an hour on the kitchen floor because everytime I tried to get up it hit me again hard and I had to go back down to the ground (The kitchen lights tend to bother migraine but earlier in the evening had visited hubby's grandma in the nursing home and she was not doing well). Then last night, Wednesday, I take a shower and have to sit down in the shower and then finally made it out to lie down on the bathroom floor and towel myself off sitting down. Took awhile to get over and then slept for awhile and now woke up at 2:30 this morning waiting to go back to sleep but can't try to hard or will have SPH episode.
I know the stressers right now, migraine pain increased, health of hubby's grandma, a fight with my 16 year old and dealing with ex husband issues, and work (oh work, as a CPA and 9/15 on the horizon - the corporate extended due date - my work in international consulting iand review of international forms/filings/calculations is through the roof. I have so many projects in the air that I'm getting overwhelmed with it almost to the point of not being able to move. Ever get that? So, overwhelmed that your kind of frozen in place?
The migraine - I have to do more yoga and meditation. I'm doing the meds, the herbs, the acupuncture, the migraine massages, but am not spending enough time with just me and flowing with the pain to ease it. I know consciously I'm not which goes to my previous post of depression and feeling the need to punish myself. I have to slow down and take time for me. @TheDailyHerb RT a great article tonight - http://www.stevenaitchison.co.uk/blog/2009/08/17/9-ways-to-debug-your-mind/ - that really says a lot of what I need to do. I need to step back and evaluate and clear the junk and know myself. I need to meditate and get back to my yoga at the heart of it instead of going through the motions.
Family - Hubby's grandma is in a bad way and although I've gone through this with my own grandparents (2 of them) I see how hard it is on Hubby. and am trying to be there for him and her the best I can. This is a good thing but does add stress. This I won't change. My son and ex issues have to deal with my not trusting my ex and a guilt trip my son put on me about that. It hit me hard. But, as my brother told me, he's 16 and he's supposed to push my buttons to get his way. I have to stand my ground on my decisions on things and not let myself feel the guilt or not take on the guilt. Take it as it is, a 16 year old trying to get his way. My guilt comes from the fact that I am far away from him and miss him and want to give him the best of everything but there are limitations to that. (I have joint custody but he lives with his dad in a town an hour and a half away. Our other son lives with me.) I did not and never have abandoned him and provide for him well financially and emotionally. It isn't my fault he wants something I said no to and I don't have to accept the guilt trip. He's just being 16. And he's a good solid child who is wonderful - as is my other son and I am lucky to have them. These years are just hard until when I don't know - until they finish growing up and come to appreciate me again. It's natural to pull away from parents - that's how we mature - otherwise we'd stay at home forever. I know this intellectually but have allowed myself to feel and take on the guilt. I have to stop that now!
Work - well what can I say, it is that time of year, and I have this innate need to help and please people. I have to say no when it's too much. I took a pay cut last year to work less hours and I need to stick to that. I have to be honest with myself and others about how much I'm capable of. This is complicated by the fact that I am trying to get a promotion and raise so am trying to impress people. But, everyone I meet with says I have impressed them and continue to and they aren't looking for a superwoman. I have to remember it's work and I enjoy it but I can't let it ruin my health. I have to say no or at least later to some projects. I have to step back from it so it isn't overwhelming and take it in pieces - bite size chunks - and see it that way and schedule it out so I don't overwhelm myself. Again, I know this intellectually, but harder to put into practice. But I must for my health, for myself, for my family.
So, I know the health problems, I know the health risks, I know the causes, and I know the solutions. I must work harder to put my tools in my toolbox to better use. Take time for myself. Regenerate so I can do the other things. Relax and meditate and I will be a better mother, friend, and worker for it. I'll be able to focus more and do a better job as a result of focusing and saying no at the right times.
This is my task - take time out, say no, have self awareness and self control, meditate, get back to real yoga, take my own advise and flow with the pain. Use my breathing techniques, love myself, and get back to me. It will take time, it always does when I get off track, but I can do this.
This Too Shall Pass
Love to all,
Elizabeth
Sunday, August 16, 2009
Is My Migraine Going To Be The Death Of Me?
Short post -
Been in really bad way with migraine lately - pain just won't let up. Got depressed and started thinking I deserved the pain so didn't take my meds for a day and a half and that made it worse, of course. Trying to get back on track and find my way back to happy thoughts despite the constant migraine.
Went to do some errands today and at one store I almost passed out, could taste the bile and broke out in a sweat and had to leave. Sat in my car until I was well enough and then went to another store and got the things I had to have - the first store was overcrowded and I felt like I couldn't breathe in there - and got home okay.
Migraine then got mad that I put it through that and is showing its anger still. Have to get calm and stay calm. Listened to @freemybrain relaxation tapes and that helped for awhile but then the world came back in along with the stress and the pain at its height.
Hate to take shot so early in the week since I can only have two a week, but probably the best idea.
I have to let down my 16 year old son because of his father in getting him a phone that isn't a pay as you go - which is what he has now. He wants on my plan and I want him on it but his dad keeps using his phone as his own and I don't want to pay for my exes phone bill. He's done this before and even said to my sister-in-law whom he is friends with that he's looking forward to me putting Patrick on my plan so he can use that phone and get rid of his own, so my fears are grounded in reality. But, I hate having to say no to Patrick for something not his fault. He lives with his dad - I have one child with me and he has the other. I guess 2 years isn't too long until he's in college and I won't have this worry. I just hope he feels that way. Anyhow, the worrying about it has my head in more pain.
I wonder if one day I will have a brain melt down - annuerism or stroke because of the pain being so constant and all the time - can't be good for my brain.
I want to live a happy good long life with my family and friends. Have to keep trying for a solution to all this. I hope research continues and an answer is one day found.
I don't stay long in these depressions due to pain, so I'll be better again soon and back to me. Can't wait!
This Too Shall Pass
I'll use my essential oils and herbs and meditation and yoga and take my meds and get back up on the horse and get some good work done tomorrow and I'll feel better.
That's the plan - I know we all go through this, just a bump in the road - hope to be back here soon saying I may still be in pain but I see the light and am living my life to the fullest.
Been in really bad way with migraine lately - pain just won't let up. Got depressed and started thinking I deserved the pain so didn't take my meds for a day and a half and that made it worse, of course. Trying to get back on track and find my way back to happy thoughts despite the constant migraine.
Went to do some errands today and at one store I almost passed out, could taste the bile and broke out in a sweat and had to leave. Sat in my car until I was well enough and then went to another store and got the things I had to have - the first store was overcrowded and I felt like I couldn't breathe in there - and got home okay.
Migraine then got mad that I put it through that and is showing its anger still. Have to get calm and stay calm. Listened to @freemybrain relaxation tapes and that helped for awhile but then the world came back in along with the stress and the pain at its height.
Hate to take shot so early in the week since I can only have two a week, but probably the best idea.
I have to let down my 16 year old son because of his father in getting him a phone that isn't a pay as you go - which is what he has now. He wants on my plan and I want him on it but his dad keeps using his phone as his own and I don't want to pay for my exes phone bill. He's done this before and even said to my sister-in-law whom he is friends with that he's looking forward to me putting Patrick on my plan so he can use that phone and get rid of his own, so my fears are grounded in reality. But, I hate having to say no to Patrick for something not his fault. He lives with his dad - I have one child with me and he has the other. I guess 2 years isn't too long until he's in college and I won't have this worry. I just hope he feels that way. Anyhow, the worrying about it has my head in more pain.
I wonder if one day I will have a brain melt down - annuerism or stroke because of the pain being so constant and all the time - can't be good for my brain.
I want to live a happy good long life with my family and friends. Have to keep trying for a solution to all this. I hope research continues and an answer is one day found.
I don't stay long in these depressions due to pain, so I'll be better again soon and back to me. Can't wait!
This Too Shall Pass
I'll use my essential oils and herbs and meditation and yoga and take my meds and get back up on the horse and get some good work done tomorrow and I'll feel better.
That's the plan - I know we all go through this, just a bump in the road - hope to be back here soon saying I may still be in pain but I see the light and am living my life to the fullest.
Saturday, July 25, 2009
How to talk with bosses changing your job to work with your Migraine disease
I was placed on disability last year for 3 months because my migraines which had been constant at that time for about 6 months had gotten to the point of so bad I couldn't work and had to be hospitalized. My work was very good with me during this time, but I worried about coming back to work and continuing my career path.
I learned from my stay at MHNI that I would not be able to go back to what I used to do. I'm a tax CPA working for a national firm. I worked 80+ hours a week during busy season and around 50 during other parts of the year. I was teaching national training, involved in 2 national tax expert communities and was moving my career along well, meanwhile my health was deteriorating and I was ignoring it. Working as hard as I could when I felt good enough because I knew there would be times I would be unable to work. I was doing the catch up marathon which only brought on more pain.
I hit a wall obviously and was unable to continue as I had - medically unable no matter what my career ambitions were.
I had been doing a lot of work with the national tax office and national teaching on top of taking care of my clients and becoming a specialist in a few areas. I was trying to do it all. My reason was that I wanted to be a technical expert - my ultimate goal for my career was to be working for the national tax office and doing expert technical consulting rather than managing clients and being the typical CPA - I love my clients and working with them - but I had a goal to work at a higher level away from my own clients and helping others with theirs in specific technical areas and being an advisor. As well, I wanted to teach more - I love not only the teaching, but the behind the scenes of it deciding what to teach at what level to our staff and managers and developing the programs.
Now, my health was flat out telling me I couldn't have it all anymore. So, what to do? I had options:
I could apply for a job at a client and work only with one client's issues which would be a lot less stressful as I wouldn't have to "know" everything and could know what was coming day to day. [I didn't want this because I love having something new everyday and continuous learning. I didn't want to do the same thing everyday or every year]
I could take on offer with a company offering to allow me to do international work or a client that wanted to prep me for a CFO position. [These are still options I think about if what I'm doing doesn't work, but the problem with these is they would require I "prove" myself at a new environment, educate on my condition or ignore my condition and overwork until I've proven myself which I don't think my health would have let me]
I could stay where I was and take on less challenging work, reduce the more challenging clients from my workload and reduce my hours and basically put a stop to my career advancement. [Again, not attractive as I enjoy the challenge and am not ready to stop moving up and didn't want to be average - I wanted to be an expert. And I would have to give up the teaching which I love so much so compromising on what I really want could leave me unhappy in the end and re-evaluating later or trying later to move back up by overdoing it again.]
I could go out on my own or with others and start a new business with much less low key work and less technical or challenging clients. [Bad option because I am not a sales person and the stress of that could put me in a world of hurt and I need the comfort of being able to have a health care plan that is at least somewhat affordable. Also, I'm the primary breadwinner so would cause a decrease in income for my family for a number of years or could fail and the stress could hurt my migraines more.]
I could stay on disability - or move to long term disability - it was an option my doctors gave me and told me if I didn't change something would be difinitive for me without my input. [I just hate the idea of it. If I can be capable in some way to be out there working I need to be for my own psyche. And again, I am the primary bread winner.]
I could go to work for a regional or local CPA firm where the issues and clients would be less challenging and therefore less stressful. [I've done this before when I was leaving an even larger firm than I'm at now because of the stress and migraines. I was bored with the work and didn't feel challenged and hated going to work everyday.]
Or I could try to get what I wanted from where I was. Stay on a career path, do more national tax office work and technical consulting and teaching and get rid of the client management and deadlines that always lead to let-down migraines. [How to go about this? How to get what I want?]
Well, being an analytical person - I am a CPA afterall - I went through all these options as I have here and weighed the pros and cons. Then I decided to try to get what I wanted out of my career. Here's where it gets sticky.
1. You can't go into your place of work and ask them to take you off of the client management - the money making place - and have you only do national level - nonbillable work. They won't go for that because it isn't in their best interest.
2. Remember that the company, no matter how much they care for you as a person, has to look to their bottom line and if you are contributing to it or not.
3. Although your boss may feel for you deeply, they can't, especially in this economy, let you do what you want because it makes you feel better. They have to look at what you contribute to the organization.
4. So, I knew I couldn't come at this from an emotional angle. I already knew they cared a lot for me - they raised almost $2,000 for me while I was on disability to help me pay my medical bills and buy food and get by on the lower disability pay. More tears and help me no matter how much they want to help, isn't the business of business.
5. People - who don't fully understand - get tired of the complaining. I've seen it before at work with non-health issues. The constant complainer may be listened to at first, but then is ignored and then is looked down on. So, I couldn't complain.
6. So, I came to the conclusion that I had to sell myself to them, much as I did in my first interview, as how I would add value to the company.
7. I had to be sure to include my limitations and accept them but frame them as benefits to the company - hard to do when you are in a lot of pain and can't see benefits.
So, what did I do. Well, I'll start out by saying that I now am doing everything I wanted in my career with a reduced workload and reduced hours and am seen as a resource to people in my office, national offices, and higher ups. I am shooting for a promotion this year - even though I was on disability last year - and I think I have a good shot at it and a good raise and bonus. So, I think I was successful. Here's what I did.
1. Took all of my short term disability that my doctors told me to take - I did not try to go back to work sooner to show them I was ready to rock & roll. I used the time to hone my skills at yoga, stress reduction, noticing and becoming familiar with triggers and very importantly, learning how to say no. (Very difficult for a woman, I must say). Take the time off. Don't jump back in too soon.
2. Realized I couldn't do it alone and got a great therapist to help me role play how I would frame then and continue to frame my abilities and limitations. Role playing talking to my superiors was monumentally helpful because the first few times I broke down and reverted to the pain and coming at the situation from the emotional side - pleading for help. It took a lot of practice to learn to use humor and other tools when talking to my superiors. A lot of role playing. Do it - often and continuously because you will continue to need it. Whether or not you do it with friends or a specialist, Role play it out.
3. I wrote a sort of resume - more a job description of the job I wanted. I used a lot of detail, broke it down to many items and included how each item benefited the company. Breaking it down to many items looks like a lot that you are able to do, even though you are reducing your overall workload and stress. Extremely important to write down the benefits the company gets from your performing said activities because it's written down and helps you stay on that focus rather than reverting back to the emotional.
4. I set an appointment with not only my direct superiors but also with the president of the company - who I was familiar with - I wouldn't recommend if you don't know or have a relationship with the person. But, I made it very formal and on my terms. So, I wasn't having conversations with different people at different times and talking about how I'm doing or adding personal conversations - which can lead back to an emotional rather than what I had to aim for - the business' advantage of my new responsibilities. I took charge of framing the conversation, where it was, everyone at the table, a set agenda, business like and formal. I knew they would want to ask how I was doing and I couldn't let that derail me from my mission - to sell them on my new job responsibilities. So, you frame the conversation and agenda and place of meeting.
5. I went point by point down my pre-set agenda and written job description (resume) and pointed out what I wanted in a statement and then elaborated more than what was written on how the company would benefit financially and what value I was going to add by changing what I was doing. (Note it may help to ask others in the office that are friendly to you how they think the company would benefit - get some help on this one. I did from former colleagues, other CPAs that are friends, friends in other industries even, and from my husband and family). And again, I practiced my presentation over and over to strip it of emotion.
6. If my condition was brought up I was honest about how it would effect my life and why the new job description would allow my condition to interfere a lot less. For example, working from home so I could take breaks and keep on task. How taking away the deadlines would allow me to accomplish things more easily in a timely manner because the pressure wouldn't be there. How I had learned to say no if too many things came on my plate at once and how to manage my schedule. That I had taken classes or such on how to better manage my schedule. That I was seeing a therapist to help me through my condition and how to work with it so things didn't get out of hand before I could manage them. That I would remain honest with them and keep them updated on my condition and how I was handling things and we could adjust as necessary my job duties.
7. I pointed out that I was going to be offering the firm a service that was needed. That many managers, including my former self, needed someone that didn't have their own clients so were available to help when situations came up. That many in the firm have expressed the need for someone that was a specialist consultant. That I would be able to work on billable projects that currently are sitting on other manager's desks because they can't get to them with all the other things they need to do. That the national tax office had many projects that they were willing to pay individual offices for the time of people to handle those projects. That the firm in its mission statement wants to be a business advisor and how when everyone is overwhelmed we miss that often and I could fill that role. How the firm's goal was to get all offices on a single platform but no one had time to work on templates, models, etc. so I would be working toward the firm's goals. How in our office, many expressed a need for someone to be a go to person for setting up and keeping updated templates, how to guides and help younger staff by teaching more lunch n learns on specific topics but no one currently had the time and so when they were done, they were always rushed, but I could fill that needed space. That the national tax office needed more instructors and people developing webinars and trainings but no one had time and that since trainings took place mostly in our city, the cost of having others travel would be reduced, while the national office would pay my local office for my time on those projects.
A lot of this is specific to my situation, but I hope you can take something from it and use in your situation. I would love to help you role play or review your "resume/new job duties" requests.
A short list of the above to remember is
1. Take the time off your doctors tell you to for disability. Don't jump back in too soon. Use the time to put yourself together and your plan and decide what you want.
2. Get help. And role play a lot.
3. Write it out - exactly what you will be doing in many items and the benefits to the company to help you stay focused and keep off the emotional plea.
4. Take charge of framing the conversation, the agenda and place of meeting. Try to keep it formal and have all parties at the same table. You set the stage don't let them. Be assertive.
5. Practice the conversation before hand a lot. Learn to stick to the agenda you wrote. Practice keeping distractions at bay and how to deal with them when they come up.
6. Be honest about your limitations. Do not try to oversell yourself. You are good enough as you are. Introduce how you are going to handle those limitations.
7. Point out specifically how you will meet a need of the company that currently is not being met in your current workload. Give them a business reason to say yes to your request.
I hope this helps and again, am here to help others if they need help writing up something, practicing, or venting.
All the best wishes - This Too Shall Pass
I learned from my stay at MHNI that I would not be able to go back to what I used to do. I'm a tax CPA working for a national firm. I worked 80+ hours a week during busy season and around 50 during other parts of the year. I was teaching national training, involved in 2 national tax expert communities and was moving my career along well, meanwhile my health was deteriorating and I was ignoring it. Working as hard as I could when I felt good enough because I knew there would be times I would be unable to work. I was doing the catch up marathon which only brought on more pain.
I hit a wall obviously and was unable to continue as I had - medically unable no matter what my career ambitions were.
I had been doing a lot of work with the national tax office and national teaching on top of taking care of my clients and becoming a specialist in a few areas. I was trying to do it all. My reason was that I wanted to be a technical expert - my ultimate goal for my career was to be working for the national tax office and doing expert technical consulting rather than managing clients and being the typical CPA - I love my clients and working with them - but I had a goal to work at a higher level away from my own clients and helping others with theirs in specific technical areas and being an advisor. As well, I wanted to teach more - I love not only the teaching, but the behind the scenes of it deciding what to teach at what level to our staff and managers and developing the programs.
Now, my health was flat out telling me I couldn't have it all anymore. So, what to do? I had options:
I could apply for a job at a client and work only with one client's issues which would be a lot less stressful as I wouldn't have to "know" everything and could know what was coming day to day. [I didn't want this because I love having something new everyday and continuous learning. I didn't want to do the same thing everyday or every year]
I could take on offer with a company offering to allow me to do international work or a client that wanted to prep me for a CFO position. [These are still options I think about if what I'm doing doesn't work, but the problem with these is they would require I "prove" myself at a new environment, educate on my condition or ignore my condition and overwork until I've proven myself which I don't think my health would have let me]
I could stay where I was and take on less challenging work, reduce the more challenging clients from my workload and reduce my hours and basically put a stop to my career advancement. [Again, not attractive as I enjoy the challenge and am not ready to stop moving up and didn't want to be average - I wanted to be an expert. And I would have to give up the teaching which I love so much so compromising on what I really want could leave me unhappy in the end and re-evaluating later or trying later to move back up by overdoing it again.]
I could go out on my own or with others and start a new business with much less low key work and less technical or challenging clients. [Bad option because I am not a sales person and the stress of that could put me in a world of hurt and I need the comfort of being able to have a health care plan that is at least somewhat affordable. Also, I'm the primary breadwinner so would cause a decrease in income for my family for a number of years or could fail and the stress could hurt my migraines more.]
I could stay on disability - or move to long term disability - it was an option my doctors gave me and told me if I didn't change something would be difinitive for me without my input. [I just hate the idea of it. If I can be capable in some way to be out there working I need to be for my own psyche. And again, I am the primary bread winner.]
I could go to work for a regional or local CPA firm where the issues and clients would be less challenging and therefore less stressful. [I've done this before when I was leaving an even larger firm than I'm at now because of the stress and migraines. I was bored with the work and didn't feel challenged and hated going to work everyday.]
Or I could try to get what I wanted from where I was. Stay on a career path, do more national tax office work and technical consulting and teaching and get rid of the client management and deadlines that always lead to let-down migraines. [How to go about this? How to get what I want?]
Well, being an analytical person - I am a CPA afterall - I went through all these options as I have here and weighed the pros and cons. Then I decided to try to get what I wanted out of my career. Here's where it gets sticky.
1. You can't go into your place of work and ask them to take you off of the client management - the money making place - and have you only do national level - nonbillable work. They won't go for that because it isn't in their best interest.
2. Remember that the company, no matter how much they care for you as a person, has to look to their bottom line and if you are contributing to it or not.
3. Although your boss may feel for you deeply, they can't, especially in this economy, let you do what you want because it makes you feel better. They have to look at what you contribute to the organization.
4. So, I knew I couldn't come at this from an emotional angle. I already knew they cared a lot for me - they raised almost $2,000 for me while I was on disability to help me pay my medical bills and buy food and get by on the lower disability pay. More tears and help me no matter how much they want to help, isn't the business of business.
5. People - who don't fully understand - get tired of the complaining. I've seen it before at work with non-health issues. The constant complainer may be listened to at first, but then is ignored and then is looked down on. So, I couldn't complain.
6. So, I came to the conclusion that I had to sell myself to them, much as I did in my first interview, as how I would add value to the company.
7. I had to be sure to include my limitations and accept them but frame them as benefits to the company - hard to do when you are in a lot of pain and can't see benefits.
So, what did I do. Well, I'll start out by saying that I now am doing everything I wanted in my career with a reduced workload and reduced hours and am seen as a resource to people in my office, national offices, and higher ups. I am shooting for a promotion this year - even though I was on disability last year - and I think I have a good shot at it and a good raise and bonus. So, I think I was successful. Here's what I did.
1. Took all of my short term disability that my doctors told me to take - I did not try to go back to work sooner to show them I was ready to rock & roll. I used the time to hone my skills at yoga, stress reduction, noticing and becoming familiar with triggers and very importantly, learning how to say no. (Very difficult for a woman, I must say). Take the time off. Don't jump back in too soon.
2. Realized I couldn't do it alone and got a great therapist to help me role play how I would frame then and continue to frame my abilities and limitations. Role playing talking to my superiors was monumentally helpful because the first few times I broke down and reverted to the pain and coming at the situation from the emotional side - pleading for help. It took a lot of practice to learn to use humor and other tools when talking to my superiors. A lot of role playing. Do it - often and continuously because you will continue to need it. Whether or not you do it with friends or a specialist, Role play it out.
3. I wrote a sort of resume - more a job description of the job I wanted. I used a lot of detail, broke it down to many items and included how each item benefited the company. Breaking it down to many items looks like a lot that you are able to do, even though you are reducing your overall workload and stress. Extremely important to write down the benefits the company gets from your performing said activities because it's written down and helps you stay on that focus rather than reverting back to the emotional.
4. I set an appointment with not only my direct superiors but also with the president of the company - who I was familiar with - I wouldn't recommend if you don't know or have a relationship with the person. But, I made it very formal and on my terms. So, I wasn't having conversations with different people at different times and talking about how I'm doing or adding personal conversations - which can lead back to an emotional rather than what I had to aim for - the business' advantage of my new responsibilities. I took charge of framing the conversation, where it was, everyone at the table, a set agenda, business like and formal. I knew they would want to ask how I was doing and I couldn't let that derail me from my mission - to sell them on my new job responsibilities. So, you frame the conversation and agenda and place of meeting.
5. I went point by point down my pre-set agenda and written job description (resume) and pointed out what I wanted in a statement and then elaborated more than what was written on how the company would benefit financially and what value I was going to add by changing what I was doing. (Note it may help to ask others in the office that are friendly to you how they think the company would benefit - get some help on this one. I did from former colleagues, other CPAs that are friends, friends in other industries even, and from my husband and family). And again, I practiced my presentation over and over to strip it of emotion.
6. If my condition was brought up I was honest about how it would effect my life and why the new job description would allow my condition to interfere a lot less. For example, working from home so I could take breaks and keep on task. How taking away the deadlines would allow me to accomplish things more easily in a timely manner because the pressure wouldn't be there. How I had learned to say no if too many things came on my plate at once and how to manage my schedule. That I had taken classes or such on how to better manage my schedule. That I was seeing a therapist to help me through my condition and how to work with it so things didn't get out of hand before I could manage them. That I would remain honest with them and keep them updated on my condition and how I was handling things and we could adjust as necessary my job duties.
7. I pointed out that I was going to be offering the firm a service that was needed. That many managers, including my former self, needed someone that didn't have their own clients so were available to help when situations came up. That many in the firm have expressed the need for someone that was a specialist consultant. That I would be able to work on billable projects that currently are sitting on other manager's desks because they can't get to them with all the other things they need to do. That the national tax office had many projects that they were willing to pay individual offices for the time of people to handle those projects. That the firm in its mission statement wants to be a business advisor and how when everyone is overwhelmed we miss that often and I could fill that role. How the firm's goal was to get all offices on a single platform but no one had time to work on templates, models, etc. so I would be working toward the firm's goals. How in our office, many expressed a need for someone to be a go to person for setting up and keeping updated templates, how to guides and help younger staff by teaching more lunch n learns on specific topics but no one currently had the time and so when they were done, they were always rushed, but I could fill that needed space. That the national tax office needed more instructors and people developing webinars and trainings but no one had time and that since trainings took place mostly in our city, the cost of having others travel would be reduced, while the national office would pay my local office for my time on those projects.
A lot of this is specific to my situation, but I hope you can take something from it and use in your situation. I would love to help you role play or review your "resume/new job duties" requests.
A short list of the above to remember is
1. Take the time off your doctors tell you to for disability. Don't jump back in too soon. Use the time to put yourself together and your plan and decide what you want.
2. Get help. And role play a lot.
3. Write it out - exactly what you will be doing in many items and the benefits to the company to help you stay focused and keep off the emotional plea.
4. Take charge of framing the conversation, the agenda and place of meeting. Try to keep it formal and have all parties at the same table. You set the stage don't let them. Be assertive.
5. Practice the conversation before hand a lot. Learn to stick to the agenda you wrote. Practice keeping distractions at bay and how to deal with them when they come up.
6. Be honest about your limitations. Do not try to oversell yourself. You are good enough as you are. Introduce how you are going to handle those limitations.
7. Point out specifically how you will meet a need of the company that currently is not being met in your current workload. Give them a business reason to say yes to your request.
I hope this helps and again, am here to help others if they need help writing up something, practicing, or venting.
All the best wishes - This Too Shall Pass
Saturday, July 18, 2009
My conversation with my neurologist about healthcare
I went to the neurologist on Thursday with a lot of questions about my health, the increased pain over the last three weeks and what we could do or adjust. Among other questions I'll get to in a minute and are more important.
I'm hypothyroid and it was controlled for many years. When my thyroid goes off, if doesn't go a little bit. My TSH levels (which are supposed to be 4-5 units and you are hypothyroid if it is 20 units) is either normal or 150 - 450 - 450 was at my worst when first diagnosed. It went off - TSH of 250 about the time that I went into a constant migraine mode - actually a few months after. We got it back regulated and was fine 6 months ago and then a few weeks ago it was back worse again with a TSH count of 154. Who knows how long it had been off but cooincides somewhat with my increased pain. Which could also be caused by the weather, my stress, or any number of other things - let down from stress is a big trigger for me.
So, my neurologist, correctly I think, decided with me that we shouldn't make any major changes in my migraine treatment until we can get my thyroid back to normal because the thyroid can be causing my meds to not work effectively and we would have a hard time telling if new meds were working or not.
But, I also talked with my neurologist about what's happening with the FDA and acetamenophen freak out. I have been so stressed and scared about all the talk because I've had trouble in the past with my insurance denying me migraine treatment meds prescribed by doctors which caused untreated migraines and I think led to the constant migraine. Maybe it would have come anyway, but even my docs think that having let migraines go untreated contributed to my current situation.
I now get the meds I need but am worried right now about the FDA and talks about over medication and cutting meds. As migraines causes are so varied and the treatment is so varied and one thing doesn't work for another patient and many meds are off-label use for migraines, I see others thinking of it as a target for saving health care costs and meds and thinking migraineurs over use meds.
I don't over use my meds - I go strictly by doctors orders and don't take any narcotics (mostly because they don't help anyway - except before surgeries I've had when they've given me phentinol (sp?) and it instantly took the migraine away (only relief I've had over the last 18 months) but we tried the patch and that didn't work) so I don't think I should be a target but worry that I am. I take Toradol shots twice a week - I would more often because they are one thing that always lowers my pain level instantly - but it is bad for my liver and I follow the rules. I don't want to be punished for people that over use or abuse medications - a lot of time not their fault even when they are just trying to get out of pain and end up hooked. I feel for them and worry about becoming like that myself which is why I am so strict about following labels and working with my doctors to find non-narcotic treatments for my migraines.
Anyway - I guess I'm never short with these even when I think I'm going to be - I talked this out with my neurologist - my fear that "they" will come after my meds next - especially my toradol since it can hurt your liver. She was wonderful in calming me down. I have to give her a shout out - Dr. Laura Reilly with Dr. Kaplan's office and Jenny Ravenscroft my PA, Thank you all!
She calmed me down telling me that their were many like her in the migraine business that would stand together and not let "them" take away our treatments. That the migraine doctors would stand up for us and fight for us. I've seen my doctors do that in fighting with my insurance company for me and sometimes winning and sometimes losing but I have seen them stand up. Even with my work, they wrote letters explaining my condition to them. I hope that she is right that the many doctors at MHNI - Dr. Saper and his team - that helped me and the others at clinics around the country that help people every day will stand up and not let the FDA take away our meds.
She explained to me what was going on. Rationally - she knows as a CPA that's the best argument to make with me - she stated what was going on and why she agreed to a degree about what was happening. According to her, it's about acetamenophen and the worry of overdoses. She said she always thought extra strength tylenol should have been a prescription because people take more than the label dose. If the bottle says take two - why not take three - that will work better, right. I admit when I was treating migraines over the counter, I did that so a logical, rational argument to me.
So, according to my doctor if you take away the extra strength tylenol people would have to take 15 tylenol a day to just go over the max dosage to the danger area and people are less likely to do that. With the extra-strength - it only takes 5 a day to reach the maximum dosage. Then, still according to my doctor, vicodin and the other narcotics that contain acetamenophen prescribed to patients could even quicker get over the max dosage if they took vicodin plus 4-5 extra strenth tylenols a day. So, she said, there needed to be more control there to help people not accidentally overdose. She said my meds were safe and not on the radar yet and she would be upfront and let me know if she thought anything could be targeted. And again that migraine specialist doctors would rally for their patients.
I know not everyone has a great team of doctors helping them with their migraines like I do and I feel for you all. I have a neurologist and PA that specialize and will never give up on me. They see me once a month and answer all my emails. I have a new sleep doctor who worked with Dr. Saper at MHNI for five years working with migraineurs and their issues. I have an accupuncturist who says it may take a while - 18 - 24 months - to get my body out of what it considers a normal state (pain) and retrain it but won't give up on me. I have a migraine massage therapist who works with my accupuncturist and works with me once a week giving me at least an hour of less pain. (I've had normal massages and deep tissue massages that make the migraine worse even though feels good at the time so I'm lucky to have someone who knows how to do a migraine massage). And I have my therapist who works with me on how to live with the pain and live my life and not just abide, who keeps me from overgeneralizing, and who helps me to remember to stand up for myself. All give me extra tips on essential oils, meditation, yoga, herbs and all the rest and study to keep up to date on my problem and the latest. I know I'm very lucky. I hope everyone in pain finds a team that won't give up on you and really listen to you. I'm still suffering but as long as I have this team behind me I won't give up either and will live my life to the fullest I can and will continue to see the light at the end of the tunnel.
So, I feel better about not losing my meds and will stand up with the doctors to make sure insurance companies, FDA and other government agencies know that we are here and we need relief and we are a valuable part of society if you help us find that relief.
This Too Shall Pass - my neuro even said that to me as her last statement - did I tell her before that this is my mantra passed to me from my grandma or a coincidence?
Take care all,
Elizabeth
I'm hypothyroid and it was controlled for many years. When my thyroid goes off, if doesn't go a little bit. My TSH levels (which are supposed to be 4-5 units and you are hypothyroid if it is 20 units) is either normal or 150 - 450 - 450 was at my worst when first diagnosed. It went off - TSH of 250 about the time that I went into a constant migraine mode - actually a few months after. We got it back regulated and was fine 6 months ago and then a few weeks ago it was back worse again with a TSH count of 154. Who knows how long it had been off but cooincides somewhat with my increased pain. Which could also be caused by the weather, my stress, or any number of other things - let down from stress is a big trigger for me.
So, my neurologist, correctly I think, decided with me that we shouldn't make any major changes in my migraine treatment until we can get my thyroid back to normal because the thyroid can be causing my meds to not work effectively and we would have a hard time telling if new meds were working or not.
But, I also talked with my neurologist about what's happening with the FDA and acetamenophen freak out. I have been so stressed and scared about all the talk because I've had trouble in the past with my insurance denying me migraine treatment meds prescribed by doctors which caused untreated migraines and I think led to the constant migraine. Maybe it would have come anyway, but even my docs think that having let migraines go untreated contributed to my current situation.
I now get the meds I need but am worried right now about the FDA and talks about over medication and cutting meds. As migraines causes are so varied and the treatment is so varied and one thing doesn't work for another patient and many meds are off-label use for migraines, I see others thinking of it as a target for saving health care costs and meds and thinking migraineurs over use meds.
I don't over use my meds - I go strictly by doctors orders and don't take any narcotics (mostly because they don't help anyway - except before surgeries I've had when they've given me phentinol (sp?) and it instantly took the migraine away (only relief I've had over the last 18 months) but we tried the patch and that didn't work) so I don't think I should be a target but worry that I am. I take Toradol shots twice a week - I would more often because they are one thing that always lowers my pain level instantly - but it is bad for my liver and I follow the rules. I don't want to be punished for people that over use or abuse medications - a lot of time not their fault even when they are just trying to get out of pain and end up hooked. I feel for them and worry about becoming like that myself which is why I am so strict about following labels and working with my doctors to find non-narcotic treatments for my migraines.
Anyway - I guess I'm never short with these even when I think I'm going to be - I talked this out with my neurologist - my fear that "they" will come after my meds next - especially my toradol since it can hurt your liver. She was wonderful in calming me down. I have to give her a shout out - Dr. Laura Reilly with Dr. Kaplan's office and Jenny Ravenscroft my PA, Thank you all!
She calmed me down telling me that their were many like her in the migraine business that would stand together and not let "them" take away our treatments. That the migraine doctors would stand up for us and fight for us. I've seen my doctors do that in fighting with my insurance company for me and sometimes winning and sometimes losing but I have seen them stand up. Even with my work, they wrote letters explaining my condition to them. I hope that she is right that the many doctors at MHNI - Dr. Saper and his team - that helped me and the others at clinics around the country that help people every day will stand up and not let the FDA take away our meds.
She explained to me what was going on. Rationally - she knows as a CPA that's the best argument to make with me - she stated what was going on and why she agreed to a degree about what was happening. According to her, it's about acetamenophen and the worry of overdoses. She said she always thought extra strength tylenol should have been a prescription because people take more than the label dose. If the bottle says take two - why not take three - that will work better, right. I admit when I was treating migraines over the counter, I did that so a logical, rational argument to me.
So, according to my doctor if you take away the extra strength tylenol people would have to take 15 tylenol a day to just go over the max dosage to the danger area and people are less likely to do that. With the extra-strength - it only takes 5 a day to reach the maximum dosage. Then, still according to my doctor, vicodin and the other narcotics that contain acetamenophen prescribed to patients could even quicker get over the max dosage if they took vicodin plus 4-5 extra strenth tylenols a day. So, she said, there needed to be more control there to help people not accidentally overdose. She said my meds were safe and not on the radar yet and she would be upfront and let me know if she thought anything could be targeted. And again that migraine specialist doctors would rally for their patients.
I know not everyone has a great team of doctors helping them with their migraines like I do and I feel for you all. I have a neurologist and PA that specialize and will never give up on me. They see me once a month and answer all my emails. I have a new sleep doctor who worked with Dr. Saper at MHNI for five years working with migraineurs and their issues. I have an accupuncturist who says it may take a while - 18 - 24 months - to get my body out of what it considers a normal state (pain) and retrain it but won't give up on me. I have a migraine massage therapist who works with my accupuncturist and works with me once a week giving me at least an hour of less pain. (I've had normal massages and deep tissue massages that make the migraine worse even though feels good at the time so I'm lucky to have someone who knows how to do a migraine massage). And I have my therapist who works with me on how to live with the pain and live my life and not just abide, who keeps me from overgeneralizing, and who helps me to remember to stand up for myself. All give me extra tips on essential oils, meditation, yoga, herbs and all the rest and study to keep up to date on my problem and the latest. I know I'm very lucky. I hope everyone in pain finds a team that won't give up on you and really listen to you. I'm still suffering but as long as I have this team behind me I won't give up either and will live my life to the fullest I can and will continue to see the light at the end of the tunnel.
So, I feel better about not losing my meds and will stand up with the doctors to make sure insurance companies, FDA and other government agencies know that we are here and we need relief and we are a valuable part of society if you help us find that relief.
This Too Shall Pass - my neuro even said that to me as her last statement - did I tell her before that this is my mantra passed to me from my grandma or a coincidence?
Take care all,
Elizabeth
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