As you may have seen I have changed the name of my blog and the info about myself. I had originally started this blog to talk about my chronic intractable migraines. But, I noticed that through my blogs my other chronic conditions interfere/interact/co-exist and shouldn't be denied.
Rather than simply referring to them all the time I need to give them the credit they deserve.
I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses. I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine. I then took the time to start research on each of my chronic illnesses. I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine. Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.
In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are. A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that.
Although it is sad it is also empowering. I have become stronger for it.
I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with. Every time you think you have it under control, it goes out of whack again. Yes, that is partially due to the interaction with my being in chronic pain. But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.
I live with Anxiety - I have all my life. It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse. It interrupts and interferes with my life.
I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer. It got to where I had them 3-5 times a month and it was extremely interfering with my life. Well, I thought that was bad. In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.
I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope. Technical term is Neurocardiogenic Syncope. It causes fainting episodes during which I have "seizure like" movements. But in research I found it affects me even when I am not having an episode. See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor. People that have seen it - like my husband while we were still dating - see it as extremely scary.
I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you. Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.
I have Essential Tremor - some people call it familial tremor since it is hereditary. You may be able to go through most of your life with minor hand tremors that don't interfere with your life. For me, the chronic pain and the anxiety have kicked it into high gear. Although it was getting bad before that - I recognize that now. I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me. My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear. It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive. Writing is almost impossible now. But, the joke is trying to take out contacts or trim fingernails or eat a sandwich! I can talk more about that later.
I live with Tinnitus - a constant ringing in the ears. It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end. This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.
I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines. Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them. And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that. Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.
Lately - over the last 8 months about - I have started dropping weight significantly. I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight. But, now I keep losing. I was happy when I was back to where I was before the steroids, but it kept going and keeps going. So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.
I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.
I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.
More later - much love and take care,
Elizabeth
Friday, September 24, 2010
Saturday, August 28, 2010
Migraine, Migraine, Migraine - and Familial Tremors
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.
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.
Tuesday, June 8, 2010
Why am I still awake?
So, it's 5:10 am and I have been awake all day and all night. Not for work since I've been put on short term disability to rest and rest and rest.
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
Friday, May 14, 2010
Been Gone So Long - The Migraine Story Continues
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!
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!
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.
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