Saturday, July 30, 2011
Ahhh... relief :))
Just finished with Thomas, my new massage therapist. He was phenomenal! He beat the crap out of me and I loved it! I feel so much looser with full range of motion again! He is tatooed and married, about my age. He is also legally blind which I think makes him an awesome masseur. Since he cannot rely on his sight, he relies on his sense of feel. Man, it was good :) This town holds so much promise... first, Hinder comes to our county fair and now I find an amazing pain manager! Life is good!
Thursday, July 28, 2011
Rain, rain, go away...
Ugh... more drugs last night. These storms are beyond annoying at this point :(
Last night, I showed my husband the blog and explained that I am going to be more active on the site because I believe this is an ingredient in the recipe of my happiness. He brought up a good question: What would someone reading this think about the success or failure of the surgery? So, I feel the need to summarize my health since having the Endoscopic Decompression at the Cleveland Clinic, June 2008.
I still have headaches (obviously) but not everyday like before surgery. Change in barometric pressure cause my headaches now. Prescription migraine medicine (Axert) takes care of them but are very expensive. I also get pain in my spine along with the migraines. A little Ibuprofen takes care of the ache.
My left leg, below the knee, still has peripheral neuropathy. Mostly my foot goes all tingly. Sometimes the tingle is so intense that I cannot think of anything else. Another interesting development is that my foot muscles spasm causing my toes to curl painfully under and get stuck. It feels as intense as a charlie horse in my foot. Maybe that is what it is... not sure but hurts like hell.
The compression of my brain stem and lack of CSF flow caused injury to my Autonomic Nervous System (ANS) called Dysautonomia (diagnosed at the Vanderbilt Clinic). The Dysautonomia comes in many forms; for me it presents as Postural Orthostatic Tachycardia Syndrome (POTS), Sjogrens (dryness of the mucus membranes), slow motility, and Raynaud's Syndrome (circulation issues). There is also argument that Autoimmune Diseases can result from Dysautonomia. I have two; Hashimoto's Thyroiditis (hypothyroidism) and PCOS (Polycystic Ovarian Syndrome). I also have some sort of issue with my muscles but have not had a diagnosis for that yet. They tense up and spasm causing anything from annoyances to crippling pain. My massage therapist has told me numerous times that I am the worst she has ever seen. Awesome.
Medications: T3T4 compound, Pindolol, Prevacid, Miralax, Spironolactone, Evoxac, and Flexeril. For my headaches, I take Axert. About a year ago, I started to drink green tea at least once a night. I have found I no longer get sick. Even if I start to feel a cold coming on, it never develops into full-bore sickness. I believe this is directly related to my intake of the tea.
The worst symptom I deal with, by far, is the fatigue. I am so tired of being tired. I have found that regular daily exercise does combat this. When my doctor first started suggesting this, I wanted to punch him in the face! Didn't he understand how flipping tired I was? How in the heck was I going to muster the strength to exercise when I could hardly muster the strength to get out of bed in the morning? Well, I reluctantly admit he was right. I cannot do much; not nearly the workout a normal person can tolerate. Twenty minutes on the elliptical is about all I can take when it comes to cardio and it took me about three months to work up to that. Since moving out of our house, I haven't been able to exercise and I am suffering for it. The elliptical is in storage. I now do some leg lifts and planks, but it is not cardio and therefore not helping at all with the fatigue. I just want to sleep all the time. Hopefully, I will have my new home soon. We have a workout room in the basement.
I guess what I want folks to take away from this blog is that Endoscopic Decompression probably saved my life. Sure, I have all of these problems, but they are just leftovers of a very serious skeletal deformity. The surgery corrected mother nature's mistake. It stopped the progression and even reversed some of the affects. With the combination of the surgery and correct diagnoses by informed doctors, I now want to live. My life is good and I am happy. Not every day is filled with pain. Actually, the majority of my days are pain free. I cannot ask for anything more.
Last night, I showed my husband the blog and explained that I am going to be more active on the site because I believe this is an ingredient in the recipe of my happiness. He brought up a good question: What would someone reading this think about the success or failure of the surgery? So, I feel the need to summarize my health since having the Endoscopic Decompression at the Cleveland Clinic, June 2008.
I still have headaches (obviously) but not everyday like before surgery. Change in barometric pressure cause my headaches now. Prescription migraine medicine (Axert) takes care of them but are very expensive. I also get pain in my spine along with the migraines. A little Ibuprofen takes care of the ache.
My left leg, below the knee, still has peripheral neuropathy. Mostly my foot goes all tingly. Sometimes the tingle is so intense that I cannot think of anything else. Another interesting development is that my foot muscles spasm causing my toes to curl painfully under and get stuck. It feels as intense as a charlie horse in my foot. Maybe that is what it is... not sure but hurts like hell.
The compression of my brain stem and lack of CSF flow caused injury to my Autonomic Nervous System (ANS) called Dysautonomia (diagnosed at the Vanderbilt Clinic). The Dysautonomia comes in many forms; for me it presents as Postural Orthostatic Tachycardia Syndrome (POTS), Sjogrens (dryness of the mucus membranes), slow motility, and Raynaud's Syndrome (circulation issues). There is also argument that Autoimmune Diseases can result from Dysautonomia. I have two; Hashimoto's Thyroiditis (hypothyroidism) and PCOS (Polycystic Ovarian Syndrome). I also have some sort of issue with my muscles but have not had a diagnosis for that yet. They tense up and spasm causing anything from annoyances to crippling pain. My massage therapist has told me numerous times that I am the worst she has ever seen. Awesome.
Medications: T3T4 compound, Pindolol, Prevacid, Miralax, Spironolactone, Evoxac, and Flexeril. For my headaches, I take Axert. About a year ago, I started to drink green tea at least once a night. I have found I no longer get sick. Even if I start to feel a cold coming on, it never develops into full-bore sickness. I believe this is directly related to my intake of the tea.
The worst symptom I deal with, by far, is the fatigue. I am so tired of being tired. I have found that regular daily exercise does combat this. When my doctor first started suggesting this, I wanted to punch him in the face! Didn't he understand how flipping tired I was? How in the heck was I going to muster the strength to exercise when I could hardly muster the strength to get out of bed in the morning? Well, I reluctantly admit he was right. I cannot do much; not nearly the workout a normal person can tolerate. Twenty minutes on the elliptical is about all I can take when it comes to cardio and it took me about three months to work up to that. Since moving out of our house, I haven't been able to exercise and I am suffering for it. The elliptical is in storage. I now do some leg lifts and planks, but it is not cardio and therefore not helping at all with the fatigue. I just want to sleep all the time. Hopefully, I will have my new home soon. We have a workout room in the basement.
I guess what I want folks to take away from this blog is that Endoscopic Decompression probably saved my life. Sure, I have all of these problems, but they are just leftovers of a very serious skeletal deformity. The surgery corrected mother nature's mistake. It stopped the progression and even reversed some of the affects. With the combination of the surgery and correct diagnoses by informed doctors, I now want to live. My life is good and I am happy. Not every day is filled with pain. Actually, the majority of my days are pain free. I cannot ask for anything more.
Wednesday, July 27, 2011
Finding my happiness.
I haven't updated in almost a year. For the majority of it, my Chiari has been "sleeping". Lately, however, I have noticed some changes. It is funny how soon we forget the pain when it is no longer present; kind of like childbirth. This season has been unbelievably wet and, as most of you are aware, we are extremely sensitive to barometric pressure. I have so many headaches now. This of course leads to the overuse of medication which morphs into a rebound headache. Always a good time.
My husband and I are doing extremely well as a couple. We have recently moved. With the blessing of God, we sold our house back in May and are now in the process of purchasing a new one. Everybody please pray that our selfish government officials do not screw this up for us!
Little update on the Fam: Today is hubby's birthday. We are staying above a pole barn in the country owned by one of hubby's co-workers. They are very nice and will be coming over for birthday cheesecake. My girls are doing great, as well, although I have not seen them for most of the summer. My eldest is driving and my baby will be eleven next month. Good golly I feel old!
Moving to a new town has its difficulties, especially when you have a rare medical condition (or 2 or 3+ as most of us do). I have to find a new doc which is such a tedious process; I just got done training the last one! I think I have found a new massage therapist already, though. Hopefully he is a keeper. My friend and former massage therapist is going to call him and give him the low down on my condition. I told her to make sure he knows how much I like pain. Seriously, if I can't feel it how is it working? If I want to be petted, I will lay next to my husband ;) I will find out on Saturday if my new masseur is any good. Keeping my fingers crossed for some non-medicated relief.
So many things are going on in my life right now. I am searching my soul to find out what makes me happy. I have found myself depressed lately. The other night I cried my eyes out... I was just so sad :( There are so many young people where I work and they are established in their careers and making really good money. I had my brain surgery in June of 2008, went back to school in Dec. 2008, and just graduated last year; I am just beginning my career. I am almost 38 years old and making the same money as the high school fry cook. I am tired and hate the idea of starting from scratch. My husband said, "find something you love and I will support you". He is a great husband! I think what I love most is writing and helping people. Here, on this blog, I can combine both. So, this is me finding my happiness...
My husband and I are doing extremely well as a couple. We have recently moved. With the blessing of God, we sold our house back in May and are now in the process of purchasing a new one. Everybody please pray that our selfish government officials do not screw this up for us!
Little update on the Fam: Today is hubby's birthday. We are staying above a pole barn in the country owned by one of hubby's co-workers. They are very nice and will be coming over for birthday cheesecake. My girls are doing great, as well, although I have not seen them for most of the summer. My eldest is driving and my baby will be eleven next month. Good golly I feel old!
Moving to a new town has its difficulties, especially when you have a rare medical condition (or 2 or 3+ as most of us do). I have to find a new doc which is such a tedious process; I just got done training the last one! I think I have found a new massage therapist already, though. Hopefully he is a keeper. My friend and former massage therapist is going to call him and give him the low down on my condition. I told her to make sure he knows how much I like pain. Seriously, if I can't feel it how is it working? If I want to be petted, I will lay next to my husband ;) I will find out on Saturday if my new masseur is any good. Keeping my fingers crossed for some non-medicated relief.
So many things are going on in my life right now. I am searching my soul to find out what makes me happy. I have found myself depressed lately. The other night I cried my eyes out... I was just so sad :( There are so many young people where I work and they are established in their careers and making really good money. I had my brain surgery in June of 2008, went back to school in Dec. 2008, and just graduated last year; I am just beginning my career. I am almost 38 years old and making the same money as the high school fry cook. I am tired and hate the idea of starting from scratch. My husband said, "find something you love and I will support you". He is a great husband! I think what I love most is writing and helping people. Here, on this blog, I can combine both. So, this is me finding my happiness...
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