Monday, October 26, 2009
Knowledge Is Power!
I have a very important announcement to make regarding ACM education. I received a letter in the mail from the Cleveland Clinic inviting me to an awareness program designed to educate and inspire physicians and healthcare providers, patients, their friends and family, and the public. The letter is from Mark Luciano, MD, PhD. He was not my doctor but I think he is Dr. Di's boss. Anyway, his topic is "Are Children Just Little Adults". It doesn't mention any other speakers but it should be an interesting lecture. I would love to go but cannot drive myself thanks to ACM. My brain cannot process heavy traffic :( I really wish I could be there. This is fantastic because it not only brings about Chiari awareness, but also about the endoscopic decompression option so few Chiarians and doctors know about. Let's all send positive thoughts, well wishes, and prayers to Dr. Luciano and the awareness program. Let it be a phenomenal success!
Monday, October 12, 2009
Update On Health and Makeover
Tomorrow will be six weeks since my Extreme-Lori-Makeover and I am so very happy with the results. The Anesthesiologist decided not to turn me over during the procedure due to my neck and hyper-extension. I argued that I hyper-extend all the time and really the only thing I have not done purposely yet is ride the Tilt-A-Whirl (my all time fav ride!) even though Dr. Di said that after a year nothing was off limits. Dr. Youn, my plastic surgeon, convinced me he could do what he needed to without flipping me so I hesitantly backed down -- like I had a choice. The first three days I cursed my doctor and my decision. After they took out the drainage tubes, I felt instantly better! After that, I turned a corner in recovery. I look fabulous, if I do say so myself!
My health is good. I still have occasional peripheral neuropathy in my left foot that can span my entire leg. My Chiari headaches are all most non-existent. I still have bathroom issues. Just a reminder for those who don't know, I have gastroparesis, GERD, swallowing problems with choking and pain, and slow motility as well as all the complications that come along with it (trying to keep this family friendly here). Folks take their bodily functions for granted! I wish I never had to talk about it or think about it again. I wish my body just did what it was designed to do.
OK, I'm done whining. My new gastro doc did a test where I swallow 25 of these little radioactive rings and then periodic x-rays are taken during the following week until I have passed all the rings. Lovely, I know, but extremely important! Why did no one do this test before? I liked him the instant he suggested it. After 5 days, I had 5 left but they were at the "finish line". The moral of this icky story is that my motility isn't that bad!! It is all in the "finish line"!! Hallelujah! That is fantastic news! I went out an bought new clothes to celebrate! Girl thing. Anyway, I am taking Miralax everyday. My doc said no caffeine because it is a diuretic and it takes the water out of your colon which is bad for someone like me. The morning is when I have my one cup before dealing with my children, one of which is a teenager, before they go to school. He didn't care it was only one lousy cup of coffee and told me to stop. I did it one day, almost killed my children, and now I drink my coffee with Miralax in it. Compromise :) But I'm not admitting it to him. What is that old saying, "what you don't know..." I know, I know -- good patients shouldn't withhold information but sometimes quality of life trumps comfort and the quality of my life would go way down if I was sitting in prison for killing my children in a haze of caffeine-free sleep deprivation. I am waiting to hear from his office about what I do next.
My health is good. I still have occasional peripheral neuropathy in my left foot that can span my entire leg. My Chiari headaches are all most non-existent. I still have bathroom issues. Just a reminder for those who don't know, I have gastroparesis, GERD, swallowing problems with choking and pain, and slow motility as well as all the complications that come along with it (trying to keep this family friendly here). Folks take their bodily functions for granted! I wish I never had to talk about it or think about it again. I wish my body just did what it was designed to do.
OK, I'm done whining. My new gastro doc did a test where I swallow 25 of these little radioactive rings and then periodic x-rays are taken during the following week until I have passed all the rings. Lovely, I know, but extremely important! Why did no one do this test before? I liked him the instant he suggested it. After 5 days, I had 5 left but they were at the "finish line". The moral of this icky story is that my motility isn't that bad!! It is all in the "finish line"!! Hallelujah! That is fantastic news! I went out an bought new clothes to celebrate! Girl thing. Anyway, I am taking Miralax everyday. My doc said no caffeine because it is a diuretic and it takes the water out of your colon which is bad for someone like me. The morning is when I have my one cup before dealing with my children, one of which is a teenager, before they go to school. He didn't care it was only one lousy cup of coffee and told me to stop. I did it one day, almost killed my children, and now I drink my coffee with Miralax in it. Compromise :) But I'm not admitting it to him. What is that old saying, "what you don't know..." I know, I know -- good patients shouldn't withhold information but sometimes quality of life trumps comfort and the quality of my life would go way down if I was sitting in prison for killing my children in a haze of caffeine-free sleep deprivation. I am waiting to hear from his office about what I do next.
Monday, August 24, 2009
Sooooo Excited!!!
Just thought I would add a little update to the blog. I am having a "mommy makeover" on Sept. 1! For those of you unfamiliar with the term, it is a set of plastic surgery procedures that help reverse a little of the damage the kiddies have done to your body. In my case, I am having a breast augmentation, a mini-tummy tuck, and liposuction on my saddlebags, upper stomach and hips! YAY ME!!
So for those of you who are at that point where you just don't feel like you will ever be normal, it is possible! It has been one year and I don't give it much thought at all. Sure I still have issues from the Chiari, but nothing that brings me down. Life is too short to lie around on a couch and watch the world go on without you. I did that for way too long. Now, I'm living my own life. I am a mother and a wife to my family, not a burden to them.
I want you all to know that last year I was having brain surgery; that is how miserable my life had become. Now, a year later, I am having elective surgury like a normal woman because that is how amazing my life has become!!
I would appreciate any good thoughts or prayers offered as I think and pray for you all.
God Bless!
So for those of you who are at that point where you just don't feel like you will ever be normal, it is possible! It has been one year and I don't give it much thought at all. Sure I still have issues from the Chiari, but nothing that brings me down. Life is too short to lie around on a couch and watch the world go on without you. I did that for way too long. Now, I'm living my own life. I am a mother and a wife to my family, not a burden to them.
I want you all to know that last year I was having brain surgery; that is how miserable my life had become. Now, a year later, I am having elective surgury like a normal woman because that is how amazing my life has become!!
I would appreciate any good thoughts or prayers offered as I think and pray for you all.
God Bless!
Monday, July 6, 2009
Here we go again!
I just wanted to update everyone on the latest and greatest piece of crap I am dealing with... I have just been diagnosed with Sjogren's Disease. This is an autoimmune disease that attacks the mucous producing glands -- mainly the tear ducts and the salivary glands. The disease can also be systemic so I had to give half my blood for about 15-20 different tests involving autoimmune antibodies and organs. I am working on a disease or symptom for every letter of the alphabet. Just as a reminder, I suffer from Hashimoto's Thyroiditis (autoimmune), PCOS (autoimmune), Arnold Chiari Malformation 1 and now Sjogren's.
What led me to Sjogren's...my eyes. They were itchy, burning, crazy madness. Spooning my eyes out to run them under tap water became a viable option. I went to an allergist after a couple of years of allergy drops that only worked somewhat and she said that, since it is mostly only one eye, it is probably not allergies. That got me thinking. I made an appointment with an eye doctor and he did a few wierd tests and, wahlah!, a new diagnosis. The eye doc told me to see a rheumatologist and he confirmed. I will update more when I know more.
What led me to Sjogren's...my eyes. They were itchy, burning, crazy madness. Spooning my eyes out to run them under tap water became a viable option. I went to an allergist after a couple of years of allergy drops that only worked somewhat and she said that, since it is mostly only one eye, it is probably not allergies. That got me thinking. I made an appointment with an eye doctor and he did a few wierd tests and, wahlah!, a new diagnosis. The eye doc told me to see a rheumatologist and he confirmed. I will update more when I know more.
Tuesday, April 28, 2009
UPDATE...
Hey all, happy spring! It has been four months since I wrote on here and I think it is time for an update. I see on here that people do visit so I should give y'all something new to read.
I am doing very well. What is left of my Chiari issues are much more manageable compared to a year ago. The crushing back of the skull headaches are pretty much gone. I think I have had maybe two or three in the past 6 months. I still have the peripheral neuropathy in my left foot and sometimes leg. It comes and goes. Very strange. The back of my throat still has numb parts to it causing me to choke on liquids if I am not careful. This one really stinks. I am always choking on my drinks. I have to sort of let the liquid accumulate in the front of my mouth, feel it out if you will, before I swallow. I still have hand tremors although I think they may be a little less pronounce. Constipation is still the bane of my existence. I currently drink prune juice like a 90 year old. It helps a little. My shoulders and neck still get very sore and cause me migraines. My hubby massages them every day for me. He is so good to me :) . The Reynaulds is still there as well as the tachycardia, but I believe I addressed that in the last post. I take a beta blocker for my sympathetic nervous system malfunction and it seems to do the trick.
I have a new diagnosis, chronic dry eyes. Fascinating story, at least to me, you see I have had the worse itchy eyes the past couple of years. They have been so maddening that scooping them out with a spoon and scrubbing them down with bleach had become a real option. Every year is worse, and this year I couldn't take it. I went to an allergist and she said because it is really only one eye (the right eye was severe), it wasn't allergies. I had never thought of that. They itched something fierce and I thought that always meant allergies. Anyway, I went to the eye doc and he did a few tests on my eyes and said I had dry patches on my corneas and diagnosed me with chronic dry eyes. He gave me some drops to try. First one worked like a charm! Amazing, the itch is gone!
I thought about taking another picture of my scar, but honestly you cannot see it. My hair covers it completely. The only way I know it is there, is the indentation where the scar would be.
My life has definitely changed for the better since the surgery. It will be a year in June and I am glad I did it. I am a full-time college student with a 4.0 GPA so far. I am looking for a job (but where I live, the pickings are slim). Oh, I almost forgot the most important part, I am much calmer. I handle stress better than I did. I think this is a direct result of the lack of headaches. I was in such a deluge of constant pain. Headaches everyday. It wears you down. You just don't have the patience for noise (ie kids). So now I spend a lot of time trying to repair the damage of the last decade on my children's and my relationships. We are definitely a lot closer now.
Well, I feel like crap. My husband decided to bring home a nasty bug to me. He is so thoughtful. I want to go back to bed now.
Thanks for reading my journey to health.
God bless you all,
Lori
I am doing very well. What is left of my Chiari issues are much more manageable compared to a year ago. The crushing back of the skull headaches are pretty much gone. I think I have had maybe two or three in the past 6 months. I still have the peripheral neuropathy in my left foot and sometimes leg. It comes and goes. Very strange. The back of my throat still has numb parts to it causing me to choke on liquids if I am not careful. This one really stinks. I am always choking on my drinks. I have to sort of let the liquid accumulate in the front of my mouth, feel it out if you will, before I swallow. I still have hand tremors although I think they may be a little less pronounce. Constipation is still the bane of my existence. I currently drink prune juice like a 90 year old. It helps a little. My shoulders and neck still get very sore and cause me migraines. My hubby massages them every day for me. He is so good to me :) . The Reynaulds is still there as well as the tachycardia, but I believe I addressed that in the last post. I take a beta blocker for my sympathetic nervous system malfunction and it seems to do the trick.
I have a new diagnosis, chronic dry eyes. Fascinating story, at least to me, you see I have had the worse itchy eyes the past couple of years. They have been so maddening that scooping them out with a spoon and scrubbing them down with bleach had become a real option. Every year is worse, and this year I couldn't take it. I went to an allergist and she said because it is really only one eye (the right eye was severe), it wasn't allergies. I had never thought of that. They itched something fierce and I thought that always meant allergies. Anyway, I went to the eye doc and he did a few tests on my eyes and said I had dry patches on my corneas and diagnosed me with chronic dry eyes. He gave me some drops to try. First one worked like a charm! Amazing, the itch is gone!
I thought about taking another picture of my scar, but honestly you cannot see it. My hair covers it completely. The only way I know it is there, is the indentation where the scar would be.
My life has definitely changed for the better since the surgery. It will be a year in June and I am glad I did it. I am a full-time college student with a 4.0 GPA so far. I am looking for a job (but where I live, the pickings are slim). Oh, I almost forgot the most important part, I am much calmer. I handle stress better than I did. I think this is a direct result of the lack of headaches. I was in such a deluge of constant pain. Headaches everyday. It wears you down. You just don't have the patience for noise (ie kids). So now I spend a lot of time trying to repair the damage of the last decade on my children's and my relationships. We are definitely a lot closer now.
Well, I feel like crap. My husband decided to bring home a nasty bug to me. He is so thoughtful. I want to go back to bed now.
Thanks for reading my journey to health.
God bless you all,
Lori
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