Okay - so I have suffered from migraines almost my entire life. So what I think at this point. I have suffered from non-stop constant migraine with no let up since January 2008. Oh, I take that back. I did have a let up after my visit to the Michigan Head Pain & Neurological Institute where I was hospitalized for three weeks after having been hospitalized here and gone through so many other treatments here. Thank goodness my neurologist knows and works with them at MHNI.
But, the pain came back when I went back to work and dealt with that and was back in my normal life. As normal as could be. Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6. But that's it. That's what I live with. I have been once again placed on short term disability and have been since May and am not seeing improvement.
I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps. I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke. They also worry that the longer I am in constant pain the chance of stoke goes up.
I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications. I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often. I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot. Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary. Too much on that one - the medication they gave me has helped tremendously with that. I also have NCS which is a type of vasovagal syncope. I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.
If that isn't enough, my blood pressure runs very low normally. Apparently it is more common with migraine patients than I had thought. Anyhow, my other condition is a familial tremor. Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older. I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands.
Well, the constant migraine pain kicked it into high gear. I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving. I still drive to the doctor but everyone's at work so I have to. The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth. Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye. I have to have people fill out paperwork for me because I can't write. And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain. The computer is better because I can make the words bigger. I miss reading.
I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to. Now, I have to pat myself on the back for very small achievements. And that's okay. I am here and I will be okay. I will survive. I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.
And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me. Not of me but they miss the real me - the old me - and want me better. I do too - but I can't force that to happen. I tried. It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one. It tends to make migraines worse.
That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often. I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th. Last year's I got a lot out of.
Love to all and take care of yourselves.
Showing posts with label MHNI. Show all posts
Showing posts with label MHNI. Show all posts
Saturday, August 28, 2010
Saturday, September 5, 2009
I miss my life
I remember dancing, parties, staying up late. I remember having a life.
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.
But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.
I miss being able to spend quality time with my husband. We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.
But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.
My life has changed, but wouldn't it have anyway as I grew older. Less parties, concerts, etc are bound to happen. Changing relationships with your children are bound to happen. Everyone makes mistakes and wishes something was different about their past or about their lives.
I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns. I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.
I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.
I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems. But, doesn't everyone have their ups and downs?
Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to. Solution? I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time. I've tried to not update them and they are hurt by that. Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things. Sounds like a good idea, I'll put it in motion. I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband. Make more of an effort. I have let things slip in our marriage that it's more about taking care of me then a two way street. Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way. He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $. I need to be there for him in other ways. Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc. Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time. He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up. Part of that is that he is my comfort. But, and I don't want to lie, I need to give some of that to him. I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while. I need to do this daily. I love him and he deserves a wife.
3) Learn to say no and get in control over the stress factors in my life. I seem to like the part of work where things have to get done and done now and it's really important and all that stress. But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first. I can work on challenging projects and have reduced stress if I take control rather than letting the work take control. I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health. I have to put me first. I need to set boundaries and protect them better than I have. I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more. I do a great job and that's good, great enough. I don't have to be perfect or solve everyone's problems. Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues. I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down. That will only in the end let myself down. I will put myself first - and remember the job I do is not life or death."
I will continually have to come back to my thoughts and re-commit to my plan over and over. I have to accept I will backslide and cannot blame myself for that. I am ill. I will cherish and pat myself on the back for the accomplishments I do make.
I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat. I will focus on what my life is and will be and the joys and wonders that are to come.
Here's to all of you out there dealing with your own illnesses and problems. We are stronger than we think we are.
Much love,
Elizabeth
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.
But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.
I miss being able to spend quality time with my husband. We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.
But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.
My life has changed, but wouldn't it have anyway as I grew older. Less parties, concerts, etc are bound to happen. Changing relationships with your children are bound to happen. Everyone makes mistakes and wishes something was different about their past or about their lives.
I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns. I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.
I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.
I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems. But, doesn't everyone have their ups and downs?
Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to. Solution? I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time. I've tried to not update them and they are hurt by that. Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things. Sounds like a good idea, I'll put it in motion. I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband. Make more of an effort. I have let things slip in our marriage that it's more about taking care of me then a two way street. Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way. He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $. I need to be there for him in other ways. Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc. Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time. He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up. Part of that is that he is my comfort. But, and I don't want to lie, I need to give some of that to him. I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while. I need to do this daily. I love him and he deserves a wife.
3) Learn to say no and get in control over the stress factors in my life. I seem to like the part of work where things have to get done and done now and it's really important and all that stress. But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first. I can work on challenging projects and have reduced stress if I take control rather than letting the work take control. I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health. I have to put me first. I need to set boundaries and protect them better than I have. I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more. I do a great job and that's good, great enough. I don't have to be perfect or solve everyone's problems. Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues. I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down. That will only in the end let myself down. I will put myself first - and remember the job I do is not life or death."
I will continually have to come back to my thoughts and re-commit to my plan over and over. I have to accept I will backslide and cannot blame myself for that. I am ill. I will cherish and pat myself on the back for the accomplishments I do make.
I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat. I will focus on what my life is and will be and the joys and wonders that are to come.
Here's to all of you out there dealing with your own illnesses and problems. We are stronger than we think we are.
Much love,
Elizabeth
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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