It has been almost a
month since I had my spinal tap, and thankfully the low pressure
headaches are gone. I have increased my dosage of topamax as directed
from 1 to 2 pills a day. They give me terrible heartburn, but I can
usually keep that at bay with acid reducers like tagamet or even just
tums. I have a perscription for vicodin for the daily headache pain,
which is oddly worse than it was before I went in to see the neurologist
for the tremor problem to begin with. As an aside, the klonopin that
he prescribed for that has almost completely gotten rid of the tremors,
and helps me to sleep much more soundly. I don't like the imitrex that
he gave me for migraines. It isn't that they don't work. They do. But
they make me feel really really strange when I wake up after taking
one, and I feel like I have slept folded up in side a box and I have to
unfold myself, one body part at a time to be able to get out of bed and
get moving again. Sometimes one or both of my hands will be curled in
and completely stuck. When I am finally able to get them to loosen up,
the pins and needles are intense and last about 20 minutes. So, I try
not to use the imitrex except when the headache is a full on migraine as
a last resort.
Lots of these medications are schedule 2 and 3 narcotics. That worries the fire out of me. I am scared to death of getting addicted to them, so I won't let myself take even the prescribed dosage. I only take the vicodin when I know I am going to be home and on the couch for the night. I bought some equate migraine...acetominophen, aspirin, and caffeine (just like excedrin migraine) to take at work so I don't have to be on the vicodin while I'm there. I want to try to do that as long as I can.
The topamax most definitely has a side effect of weight loss. I have lost 14 pounds since May 31st. My food intake is probably close to half what it was before that, and I have yet to reach the full dosage, as you have to work your way up to it. That is one side affect that I hope to use to my advantage, because one of the things that I HAVE to do is lose 50 to 100 pounds to help with the Pseudotumor Cerebri.
The other major life changes I have to make are to quit smoking and to get my tubes tied. Yesterday I called my Doctor and asked him to call me in a prescription for Chantix, which is supposed to help me quit smoking. There are some of you that may not know that I am a smoker, but I have been with the exception of my pregnancy and the first two years of Riley's life since I was 17 years old. It is not a fact of which I am proud, but it is a fact nonetheless. I truly want to quit, and now that I have to, I am going to dig in and get it done.
As far as getting my tubes tied: to say that I have mixed emotions is the understatement of the century. I have always wanted to have two children. Always. ever since I was old enough to play with dolls and know what a momma was. That dream is about to be gone from me, and I can think of it objectively on some occasions, and on others, I just break down and cry. I remind myself how lucky I am to have Riley, especially since we nearly lost him and me both during his birth. But it still hurts me to read about the procedure options out there for me to permanently and purposefully prevent my body from being able to perpetuate the life of another child for me to love and to raise. I also then remind myself of all the great friends of mine who have children who I can 'steal' and treat like kings and queens and share with my Riley to make up for it. This part of this disease is actually harder for me than dealing with the pain I feel every minute of every day.
I don't mean to sound like a whiner, although I have been one all of my life, and I know it, and my friends know it and yet somehow still love me, but I don't know how I'm ever going to be able to maintain my home fighting with the pain of these headaches and the utter exhaustion of my fibromyalgia. I do so look forward to the time when Riley is big enough to wash the dishes and put away his own laundry and vacuum. That will help. In the meantime, I feel as if I am living in squalor.
The bathroom floor is full of dirty clothes. The bedroom is full of baskets of clean clothes that need to be folded and put away. Dishes are piled high in the sink and the vacuum needs to be run. All I have the energy to do is work full time, come home and get on the couch and rest, MAYBE fix dinner for my family, and go to bed. On the weekends I stay on the couch recuperating so that I can repeat the process again the next week. Our household has one income, and I can't afford to lose my job, so I spend every moment I am not at work conserving or regenerating energy so that I can go back and face another day.
The doctor tells me that this condition is going to get worse and peak in my mid-forties. I am still not certain what that means. The Mayo Clinic website tells me that if the pressure continues to stay high or to rise, it could begin pressing on my optic nerve and take my sight. The incidence of the illness is about 1 in 100,000 americans. In the high risk category, of which I am a part: obese women of childbearing age, the instance is still only 19 in 100,000. I am scared and in pain and tired. I am unsure of the future. I am living one day at a time. I am asking all of you, my dear friends, to continue to pray for me. I need you all. And please forgive me if I bring you down. I am not trying to do that. I am just trying to share my heart and search for healing. I love you all.
Lots of these medications are schedule 2 and 3 narcotics. That worries the fire out of me. I am scared to death of getting addicted to them, so I won't let myself take even the prescribed dosage. I only take the vicodin when I know I am going to be home and on the couch for the night. I bought some equate migraine...acetominophen, aspirin, and caffeine (just like excedrin migraine) to take at work so I don't have to be on the vicodin while I'm there. I want to try to do that as long as I can.
The topamax most definitely has a side effect of weight loss. I have lost 14 pounds since May 31st. My food intake is probably close to half what it was before that, and I have yet to reach the full dosage, as you have to work your way up to it. That is one side affect that I hope to use to my advantage, because one of the things that I HAVE to do is lose 50 to 100 pounds to help with the Pseudotumor Cerebri.
The other major life changes I have to make are to quit smoking and to get my tubes tied. Yesterday I called my Doctor and asked him to call me in a prescription for Chantix, which is supposed to help me quit smoking. There are some of you that may not know that I am a smoker, but I have been with the exception of my pregnancy and the first two years of Riley's life since I was 17 years old. It is not a fact of which I am proud, but it is a fact nonetheless. I truly want to quit, and now that I have to, I am going to dig in and get it done.
As far as getting my tubes tied: to say that I have mixed emotions is the understatement of the century. I have always wanted to have two children. Always. ever since I was old enough to play with dolls and know what a momma was. That dream is about to be gone from me, and I can think of it objectively on some occasions, and on others, I just break down and cry. I remind myself how lucky I am to have Riley, especially since we nearly lost him and me both during his birth. But it still hurts me to read about the procedure options out there for me to permanently and purposefully prevent my body from being able to perpetuate the life of another child for me to love and to raise. I also then remind myself of all the great friends of mine who have children who I can 'steal' and treat like kings and queens and share with my Riley to make up for it. This part of this disease is actually harder for me than dealing with the pain I feel every minute of every day.
I don't mean to sound like a whiner, although I have been one all of my life, and I know it, and my friends know it and yet somehow still love me, but I don't know how I'm ever going to be able to maintain my home fighting with the pain of these headaches and the utter exhaustion of my fibromyalgia. I do so look forward to the time when Riley is big enough to wash the dishes and put away his own laundry and vacuum. That will help. In the meantime, I feel as if I am living in squalor.
The bathroom floor is full of dirty clothes. The bedroom is full of baskets of clean clothes that need to be folded and put away. Dishes are piled high in the sink and the vacuum needs to be run. All I have the energy to do is work full time, come home and get on the couch and rest, MAYBE fix dinner for my family, and go to bed. On the weekends I stay on the couch recuperating so that I can repeat the process again the next week. Our household has one income, and I can't afford to lose my job, so I spend every moment I am not at work conserving or regenerating energy so that I can go back and face another day.
The doctor tells me that this condition is going to get worse and peak in my mid-forties. I am still not certain what that means. The Mayo Clinic website tells me that if the pressure continues to stay high or to rise, it could begin pressing on my optic nerve and take my sight. The incidence of the illness is about 1 in 100,000 americans. In the high risk category, of which I am a part: obese women of childbearing age, the instance is still only 19 in 100,000. I am scared and in pain and tired. I am unsure of the future. I am living one day at a time. I am asking all of you, my dear friends, to continue to pray for me. I need you all. And please forgive me if I bring you down. I am not trying to do that. I am just trying to share my heart and search for healing. I love you all.
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