Well, I apologize for being gone so long. I am a CPA and it was tax season. Per doctor's orders I was only to work 40-45 hours/week but then I got some reprimand that made me fairly sure that my job was at stake if I didn't "step it up" so I ended up working 75 hour weeks and my migraine is very angry about that.
This week my doctor put me on short term disability to try to get the rest I need to try to get back under control. So far, the pain hasn't let up and I am not doing well.
I know logically and truly that things will work out and I will get better and find my way. However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.
I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful. I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it. I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that. In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.
Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower. It was the same while working so I guess I'm not rested enough yet. This is a true disability and this is just one example of how my disability has disrupted my life. When it takes more than 5 spoons just to shower!
It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this. The migraine disability is winning and I am SO mad at myself for this. I feel like a failure. I know I am not and my doctors have told me that they are so proud of me and how hard I have fought. But, that I need to rest and let go and stop fighting so hard. I know that things will work out but for a little while I need to be depressed.
I need to be able to mourn the loss of my dreams, even my watered down dreams. I will make new ones and I will survive and be successful in another way, a new definition. I will be okay. But, please give me time to mourn.
To everyone out there in my situation and those in similar situations or facing trials of your own. Be strong, know that "This Too Shall Pass" and keep dreaming. But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.
I'll pick myself up and will be strong, after my mourning period.
Love and good luck to all - more later and not as long this time!
Showing posts with label essential oils. Show all posts
Showing posts with label essential oils. Show all posts
Friday, May 14, 2010
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!
Monday, January 11, 2010
Best Wishes for a New Year
Well, it's been a long, long time since my last post - September 2009 - and it is now January 2010. No, I didn't get bored of this or tired of it - I was and still am in a bad way, in a huge slump. I didn't want to post and haven't been using Twitter much either lately because my health, my migraines - the constant, unrelenting pain - has gotten to me.
I try to be upbeat and project positivity, but was unable to for awhile, and maybe still.
I did not want to post depressing or hopeless feeling posts where people would feel sorry for me or feel the need to comfort me. That's not why I started this. I do appreciate all the well wishes and all the comfort that has been offered to me and won't turn it away. But, I started this to write about my feelings about my illness, how it's going and to be upbeat. Sometimes just writing about it helps me to think more positively and that wasn't possible for me for awhile.
Like I said, maybe not yet - but let's see.
The pain has gotten worse - or more correctly - I'm feeling it more and less able to separate myself from it. It's been constant for two years now along with ringing ears and feeling faint and all the other drama. I was able to still see myself through it - like point to "that's me" and "that's the migraine" - but when I look for me lately, I can't see through the pain to me.
Even in looking for words it's like my brain synapses fire off to find the word I want to use and they get stopped by the pain and have to reroute and reroute and reroute to find a way to the other connection - the word. So far, for the most part, eventually I find the word - the synapses connect. But it takes longer and I can feel it's the pain stopping a faster connection.
That's hard, I miss me, my husband misses me, my children somewhat miss me (21 and 17 yr old boys have a lot of other things on their plate), my friends miss me, my family misses me. Even when I'm right there, they can tell I'm not - that it's pain me, no separation.
I hate that so much because before even though the pain was the same and constant I could see me and so could others. I know I'm in here! Now, the pain has increased and my doctors have increased some meds in December to combat that - some medications, adding a magnesium oil to soak through my skin, some straight up IV fluid just to hydrate me, some electrolytes to help hydrate me.
I see my acupuncturist who is incredible. He told me last session as he walked out afterward, "don't worry, I'll never give up on you." So I cried because it was just what I needed to hear - from a medical person. I've heard the same from my neuro but not lately.
Had a suggestion from my narcolepsy sleep doctor and then my neuro that perhaps I try some medication that I refused. It would take the last bit of control away from me. They argued that don't I feel out of control now and I said yes, but not like that would make me feel out of control. Upon telling my neuro some personal info she backed off and completely understood. I'm not mentioning the medication here for two reasons. One, I don't want anyone to suggest I try it anyway and two, I don't want to start a controversial conversation on the subject.
It did make me think more about control. What I've given up and how much I have left and how to hold on to it and make it grow. I still don't know the answers to these questions yet, but it's a good and healthy project. I'll let you know how it goes.
My husband misses me so much he told me he's lonely even though we spend time together - he wants me. He wasn't trying to hurt me even more although I did cry which angered the migraine monster so I did hurt more. He was just needing to express his frustration at my disability.
I do not want to go on disability. I have been allowed a reduced (for my profession as a CPA that's 40-45 hrs a week) work schedule and work almost exclusively from home. I'm a great worker and great at my job but it takes longer, more thought, more patience with me and by me to get it done, then it's still a great product. I work mostly on highly technical research and international tax issues. I am able to do that so much easier from home because I am dealing with being a consultant to the consultants rather than dealing directly with clients for the most part. I work with the clients but am not the client manager so that relieves a lot of burden.
I have to keep working and keep providing for my family. That's the fight my pain and I are having. That's the fight my disability and I are having. I am going to win. As long as I set boundaries, keep the boundaries, respect my disability, continue to get support from work and home, and find myself again.
One quick note on the magnesium oil, it does seem to be helping. I take so many meds for so many conditions and not as many meds as I do supplements and vitamins and the pain is making it hard for my body to absorb it all digestively - the magnesium oil combined with water and sprayed on like a lotion and rubbed in helps get the magnesium and more hydration in through my skin. I will say my mood has improved since starting it and a thank you to my acupuncturist for sending me to buy it.
So, Best Wishes to You All for a Happy New Year and for me to find me again. If you see me let me know.
I try to be upbeat and project positivity, but was unable to for awhile, and maybe still.
I did not want to post depressing or hopeless feeling posts where people would feel sorry for me or feel the need to comfort me. That's not why I started this. I do appreciate all the well wishes and all the comfort that has been offered to me and won't turn it away. But, I started this to write about my feelings about my illness, how it's going and to be upbeat. Sometimes just writing about it helps me to think more positively and that wasn't possible for me for awhile.
Like I said, maybe not yet - but let's see.
The pain has gotten worse - or more correctly - I'm feeling it more and less able to separate myself from it. It's been constant for two years now along with ringing ears and feeling faint and all the other drama. I was able to still see myself through it - like point to "that's me" and "that's the migraine" - but when I look for me lately, I can't see through the pain to me.
Even in looking for words it's like my brain synapses fire off to find the word I want to use and they get stopped by the pain and have to reroute and reroute and reroute to find a way to the other connection - the word. So far, for the most part, eventually I find the word - the synapses connect. But it takes longer and I can feel it's the pain stopping a faster connection.
That's hard, I miss me, my husband misses me, my children somewhat miss me (21 and 17 yr old boys have a lot of other things on their plate), my friends miss me, my family misses me. Even when I'm right there, they can tell I'm not - that it's pain me, no separation.
I hate that so much because before even though the pain was the same and constant I could see me and so could others. I know I'm in here! Now, the pain has increased and my doctors have increased some meds in December to combat that - some medications, adding a magnesium oil to soak through my skin, some straight up IV fluid just to hydrate me, some electrolytes to help hydrate me.
I see my acupuncturist who is incredible. He told me last session as he walked out afterward, "don't worry, I'll never give up on you." So I cried because it was just what I needed to hear - from a medical person. I've heard the same from my neuro but not lately.
Had a suggestion from my narcolepsy sleep doctor and then my neuro that perhaps I try some medication that I refused. It would take the last bit of control away from me. They argued that don't I feel out of control now and I said yes, but not like that would make me feel out of control. Upon telling my neuro some personal info she backed off and completely understood. I'm not mentioning the medication here for two reasons. One, I don't want anyone to suggest I try it anyway and two, I don't want to start a controversial conversation on the subject.
It did make me think more about control. What I've given up and how much I have left and how to hold on to it and make it grow. I still don't know the answers to these questions yet, but it's a good and healthy project. I'll let you know how it goes.
My husband misses me so much he told me he's lonely even though we spend time together - he wants me. He wasn't trying to hurt me even more although I did cry which angered the migraine monster so I did hurt more. He was just needing to express his frustration at my disability.
I do not want to go on disability. I have been allowed a reduced (for my profession as a CPA that's 40-45 hrs a week) work schedule and work almost exclusively from home. I'm a great worker and great at my job but it takes longer, more thought, more patience with me and by me to get it done, then it's still a great product. I work mostly on highly technical research and international tax issues. I am able to do that so much easier from home because I am dealing with being a consultant to the consultants rather than dealing directly with clients for the most part. I work with the clients but am not the client manager so that relieves a lot of burden.
I have to keep working and keep providing for my family. That's the fight my pain and I are having. That's the fight my disability and I are having. I am going to win. As long as I set boundaries, keep the boundaries, respect my disability, continue to get support from work and home, and find myself again.
One quick note on the magnesium oil, it does seem to be helping. I take so many meds for so many conditions and not as many meds as I do supplements and vitamins and the pain is making it hard for my body to absorb it all digestively - the magnesium oil combined with water and sprayed on like a lotion and rubbed in helps get the magnesium and more hydration in through my skin. I will say my mood has improved since starting it and a thank you to my acupuncturist for sending me to buy it.
So, Best Wishes to You All for a Happy New Year and for me to find me again. If you see me let me know.
Saturday, September 12, 2009
30 Things About My Invisible Illness You May Not Know
I suffer from more than one chronic invisible illness - and more than two - but I will focus here on just two: Chronic Intractable Migraines and Hypothyroidism
I'm torn because I also suffer from NCS - vasovagal syncope, a form of Dysautonomia, that also greatly affects my life, but I will leave that to my post on my most embarrassing public fainting episodes, see earlier post on this subject.
Support National Invisible Chronic Illness Week - September 13 - 20
30 Things About My Invisible Illness You May Not Know - Chronic Intractable Migraine
1. The illness I live with is: Chronic Intractable Migraines - constant
2. I was diagnosed with it in the year: migraines technically diagnosed 10 years ago, Chronic Intractable Migraine about a year and a half ago
3. But I had symptoms since: I was in my early teens
4. The biggest adjustment I’ve had to make is: adjusting work environment - I now work from home, lighting, learning to say no and learn and live with my limits - I may have to say no at the last minute.
5. Most people assume: I have a headache or wearing sunglasses because I overdid it
6. The hardest part about mornings are: Waking up and realizing the pain is still there
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to fall asleep when the pain wants me keep me awake and then taking meds and falling asleep too soon and missing time with my husband. Not getting a good nights rest even when I sleep.
10. Each day I take 23 pills & vitamins. (No comments, please) - plus monthly B12 shots and 2X a week Toradol shots
11. Regarding alternative treatments I: have tried almost everything, acupuncture, migraine massage therapy, homeopathy, physical therapy (multiple), chiropractors (multiple), essential oils and herbs, diet restriction, toxic cleansing, other strange things people suggest to me, sleep doctor and sleep study, therapy
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can act fine and not be asked too many questions if I want to remain unnoticed - although then there is less awareness and more misinformation that floats around
13. Regarding working and career: I have had to cut back my hours, change my environment to suit my illness and abilities - things I can do - work has been supportive with me - I'm a CPA and now do mostly technical research and consulting and international tax planning without the daily grind of deadlines. I have kept some of my deadline clients that are less stressful and mean a lot to me and international clients.
14. People would be surprised to know: That I am in pain 24 hours a day 7 days a week - I don't get a migraine every day - the pain never stops. But, I am able to hide it and excel when I need to for work or family and then crawl back in my cave and huddle up and cry afterwards.
15. The hardest thing to accept about my new reality has been: That I can't do everything I had planned to do and that I can't plan to do things without knowing I may have to back out.
16. Something I never thought I could do with my illness that I did was: Transform my job duties - career - into something I enjoy so much more than what I was doing before - technical research and international consulting and helping others by being a consultant to the consultants.
17. The commercials about my illness: Are Grossly inadequate and make it seem Way to easy to just take a pill and get over it - hence others think I should be able to do that. Way underestimate the debilitating nature of my illness.
18. Something I really miss doing since I was diagnosed is: Going out with friends anytime at the drop of a hat and dancing long into the night!
19. It was really hard to have to give up: My desire to be everything to all people at work and home and mourn the loss and learn to live with my limitations.
20. A new hobby I have taken up since my diagnosis is: Blogging - which has been such a great release for me!
21. If I could have one day of feeling normal again I would: First, beg for more time, then spend the entire day doing things with my husband outside, zoo, museums, parks, shopping, then going out and having a meal and a few drinks and spend time - quality time - together! - If I had more time, we would do these things in London instead of here in KC.
22. My illness has taught me: That I am more than just my illness, and to live life to it's fullest and not waste time feeling down (although I succumb at times but for a short time) about it - look to what I can do and how I can still be a great benefit to my family, job and society. And that insurance is something everyone should have access to and going into debt for illness sucks!
23. Want to know a secret? One thing people say that gets under my skin is: When people say I saw this commercial or ad that says if you try this product it will cure you - have you tried that? Or anything where someone talks about a "cure" because it isn't there.
24. But I love it when people: Tell me they are thinking about me, praying for me or just listen to me and ask if I need anything.
25. My favorite motto, scripture, quote that gets me through tough times is: from my Grandma (although she got it elsewhere) THIS TOO SHALL PASS
26. When someone is diagnosed I’d like to tell them: Find a doctor or better yet group of doctors who will continue to work with you and never give up on you - find support and don't believe it when people say it's just stress and you could get over it if you tried harder.
27. Something that has surprised me about living with an illness is: There are so many stories just like mine - I'm not alone! And I have great doctors who won't give up on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband cooks me dinner and calls me to remind me to eat.
29. I’m involved with Invisible Illness Week because: We need more awareness and to get more information for myself and how to deal with my life like this.
30. The fact that you read this list makes me feel: Happy and relieved because you know how I feel.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
30 Things About My Invisible Illness You May Not Know - Hypothyroidism
1. The illness I live with is: Hypothyroidism
2. I was diagnosed with it in the year: I was 23 - so 1994
3. But I had symptoms since: I was a teenager - I was misdiagnosed as depressed for many years because I was thin and didn't fit the profile - took being put into a psych ward where the test was routine and came out so drastic they moved me to another ward to take care of me and it was a teaching hospital so many students came by to look at me - normal TSH level is 1-5 - mine was 450, they said they didn't know how I wasn't in a coma.
4. The biggest adjustment I’ve had to make is: taking a pill everyday, having routine blood screenings and watching out for symptoms that my thyroid has gone haywire again. And that effect on my other illnesses and effectiveness of medications. And my hair thinning and shedding and whispies that look like bangs - like a receding hair line.
5. Most people assume: I'm not hypothyroid because I'm thin.
6. The hardest part about mornings are: Being overly tired and hard to wake up
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep when I don't mean to and being cold all the time
10. Each day I take 2 pills & vitamins. (No comments, please) for this illness - see above for items taken for Chronic Intractable Migraines - this is just synthroid and Dulse Liquid
11. Regarding alternative treatments I: have gone to different endocronologists and found many to be arrogant and rude - my GP takes care of my thyroid and has done research and stays up to date to help me and he is very kind.
12. If I had to choose between an invisible illness or visible I would choose: Again, see above, invisible b/c you can hide it when suits your needs for career purposes or family needs
13. Regarding working and career: See above
14. People would be surprised to know: How drastic my hypothyroidism is - most people are diagnosed with TSH levels of around 20 but mine when in trouble never stays that low is from 150 to 280 - except my first diagnosis which was 450. I could die if I wasn't treated.
15. The hardest thing to accept about my new reality has been: dealing with ups and downs of my thyroid and how it affects my other illnesses and medications.
16. Something I never thought I could do with my illness that I did was: Have the career I do
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: I don't know before I was diagnosed, I was really sick and depressed, so I'm happier now.
19. It was really hard to have to give up: Nothing
20. A new hobby I have taken up since my diagnosis is: Nothing other than above
21. If I could have one day of feeling normal again I would: See above
22. My illness has taught me: Our bodies are very fragile and a good doctor is an incredible key to life and happiness - one who understands and listens and is patient.
23. Want to know a secret? One thing people say that gets under my skin is: Why is your hair so thin and Do you have bangs? Most notably - Hair Dressers! No, I have thin hair b/c I can't help it and it all falls out and those are whispies, not bangs.
24. But I love it when people: Compliment me on my hair even though I know it looks bad
25. My favorite motto, scripture, quote that gets me through tough times is: Again, same as above, This Too Shall Pass
26. When someone is diagnosed I’d like to tell them: Research your illness from many sources don't just rely on one or just your doctor, be a part of the discussion on your illness
27. Something that has surprised me about living with an illness is: See above - finding out you aren't alone.
28. The nicest thing someone did for me when I wasn’t feeling well was: See above - just a hug is nice sometimes.
29. I’m involved with Invisible Illness Week because: See above, spread awareness
30. The fact that you read this list makes me feel: Happy and relieved you know more about me.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
I'm torn because I also suffer from NCS - vasovagal syncope, a form of Dysautonomia, that also greatly affects my life, but I will leave that to my post on my most embarrassing public fainting episodes, see earlier post on this subject.
Support National Invisible Chronic Illness Week - September 13 - 20
30 Things About My Invisible Illness You May Not Know - Chronic Intractable Migraine
1. The illness I live with is: Chronic Intractable Migraines - constant
2. I was diagnosed with it in the year: migraines technically diagnosed 10 years ago, Chronic Intractable Migraine about a year and a half ago
3. But I had symptoms since: I was in my early teens
4. The biggest adjustment I’ve had to make is: adjusting work environment - I now work from home, lighting, learning to say no and learn and live with my limits - I may have to say no at the last minute.
5. Most people assume: I have a headache or wearing sunglasses because I overdid it
6. The hardest part about mornings are: Waking up and realizing the pain is still there
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to fall asleep when the pain wants me keep me awake and then taking meds and falling asleep too soon and missing time with my husband. Not getting a good nights rest even when I sleep.
10. Each day I take 23 pills & vitamins. (No comments, please) - plus monthly B12 shots and 2X a week Toradol shots
11. Regarding alternative treatments I: have tried almost everything, acupuncture, migraine massage therapy, homeopathy, physical therapy (multiple), chiropractors (multiple), essential oils and herbs, diet restriction, toxic cleansing, other strange things people suggest to me, sleep doctor and sleep study, therapy
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can act fine and not be asked too many questions if I want to remain unnoticed - although then there is less awareness and more misinformation that floats around
13. Regarding working and career: I have had to cut back my hours, change my environment to suit my illness and abilities - things I can do - work has been supportive with me - I'm a CPA and now do mostly technical research and consulting and international tax planning without the daily grind of deadlines. I have kept some of my deadline clients that are less stressful and mean a lot to me and international clients.
14. People would be surprised to know: That I am in pain 24 hours a day 7 days a week - I don't get a migraine every day - the pain never stops. But, I am able to hide it and excel when I need to for work or family and then crawl back in my cave and huddle up and cry afterwards.
15. The hardest thing to accept about my new reality has been: That I can't do everything I had planned to do and that I can't plan to do things without knowing I may have to back out.
16. Something I never thought I could do with my illness that I did was: Transform my job duties - career - into something I enjoy so much more than what I was doing before - technical research and international consulting and helping others by being a consultant to the consultants.
17. The commercials about my illness: Are Grossly inadequate and make it seem Way to easy to just take a pill and get over it - hence others think I should be able to do that. Way underestimate the debilitating nature of my illness.
18. Something I really miss doing since I was diagnosed is: Going out with friends anytime at the drop of a hat and dancing long into the night!
19. It was really hard to have to give up: My desire to be everything to all people at work and home and mourn the loss and learn to live with my limitations.
20. A new hobby I have taken up since my diagnosis is: Blogging - which has been such a great release for me!
21. If I could have one day of feeling normal again I would: First, beg for more time, then spend the entire day doing things with my husband outside, zoo, museums, parks, shopping, then going out and having a meal and a few drinks and spend time - quality time - together! - If I had more time, we would do these things in London instead of here in KC.
22. My illness has taught me: That I am more than just my illness, and to live life to it's fullest and not waste time feeling down (although I succumb at times but for a short time) about it - look to what I can do and how I can still be a great benefit to my family, job and society. And that insurance is something everyone should have access to and going into debt for illness sucks!
23. Want to know a secret? One thing people say that gets under my skin is: When people say I saw this commercial or ad that says if you try this product it will cure you - have you tried that? Or anything where someone talks about a "cure" because it isn't there.
24. But I love it when people: Tell me they are thinking about me, praying for me or just listen to me and ask if I need anything.
25. My favorite motto, scripture, quote that gets me through tough times is: from my Grandma (although she got it elsewhere) THIS TOO SHALL PASS
26. When someone is diagnosed I’d like to tell them: Find a doctor or better yet group of doctors who will continue to work with you and never give up on you - find support and don't believe it when people say it's just stress and you could get over it if you tried harder.
27. Something that has surprised me about living with an illness is: There are so many stories just like mine - I'm not alone! And I have great doctors who won't give up on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband cooks me dinner and calls me to remind me to eat.
29. I’m involved with Invisible Illness Week because: We need more awareness and to get more information for myself and how to deal with my life like this.
30. The fact that you read this list makes me feel: Happy and relieved because you know how I feel.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
30 Things About My Invisible Illness You May Not Know - Hypothyroidism
1. The illness I live with is: Hypothyroidism
2. I was diagnosed with it in the year: I was 23 - so 1994
3. But I had symptoms since: I was a teenager - I was misdiagnosed as depressed for many years because I was thin and didn't fit the profile - took being put into a psych ward where the test was routine and came out so drastic they moved me to another ward to take care of me and it was a teaching hospital so many students came by to look at me - normal TSH level is 1-5 - mine was 450, they said they didn't know how I wasn't in a coma.
4. The biggest adjustment I’ve had to make is: taking a pill everyday, having routine blood screenings and watching out for symptoms that my thyroid has gone haywire again. And that effect on my other illnesses and effectiveness of medications. And my hair thinning and shedding and whispies that look like bangs - like a receding hair line.
5. Most people assume: I'm not hypothyroid because I'm thin.
6. The hardest part about mornings are: Being overly tired and hard to wake up
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep when I don't mean to and being cold all the time
10. Each day I take 2 pills & vitamins. (No comments, please) for this illness - see above for items taken for Chronic Intractable Migraines - this is just synthroid and Dulse Liquid
11. Regarding alternative treatments I: have gone to different endocronologists and found many to be arrogant and rude - my GP takes care of my thyroid and has done research and stays up to date to help me and he is very kind.
12. If I had to choose between an invisible illness or visible I would choose: Again, see above, invisible b/c you can hide it when suits your needs for career purposes or family needs
13. Regarding working and career: See above
14. People would be surprised to know: How drastic my hypothyroidism is - most people are diagnosed with TSH levels of around 20 but mine when in trouble never stays that low is from 150 to 280 - except my first diagnosis which was 450. I could die if I wasn't treated.
15. The hardest thing to accept about my new reality has been: dealing with ups and downs of my thyroid and how it affects my other illnesses and medications.
16. Something I never thought I could do with my illness that I did was: Have the career I do
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: I don't know before I was diagnosed, I was really sick and depressed, so I'm happier now.
19. It was really hard to have to give up: Nothing
20. A new hobby I have taken up since my diagnosis is: Nothing other than above
21. If I could have one day of feeling normal again I would: See above
22. My illness has taught me: Our bodies are very fragile and a good doctor is an incredible key to life and happiness - one who understands and listens and is patient.
23. Want to know a secret? One thing people say that gets under my skin is: Why is your hair so thin and Do you have bangs? Most notably - Hair Dressers! No, I have thin hair b/c I can't help it and it all falls out and those are whispies, not bangs.
24. But I love it when people: Compliment me on my hair even though I know it looks bad
25. My favorite motto, scripture, quote that gets me through tough times is: Again, same as above, This Too Shall Pass
26. When someone is diagnosed I’d like to tell them: Research your illness from many sources don't just rely on one or just your doctor, be a part of the discussion on your illness
27. Something that has surprised me about living with an illness is: See above - finding out you aren't alone.
28. The nicest thing someone did for me when I wasn’t feeling well was: See above - just a hug is nice sometimes.
29. I’m involved with Invisible Illness Week because: See above, spread awareness
30. The fact that you read this list makes me feel: Happy and relieved you know more about me.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
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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