There are some of you that will receive this that already know this information, so I'm sorry that you are getting this once again, but here is the scoop for those of you who have yet to hear the latest in the saga that is my life. I saw my Neurologist on Tuesday for a recheck to see how the Vitamin B is working for me and to go over the outcome of my MRV (just another fancy MRI). I already knew the results of my MRV--normal--however, I needed to let the doctor know that I am having a HORRIBLE time taking the Vitamin B due to my inability to eat anything OR when I do attempt to eat anything it just comes back for a visit hours later, completely undigested. For example: I attempted eating a couple of table spoons of macaroni and several hours later I ended up vomiting up whole pieces of it. When I told the doctor this he asked me if I had ever had a Gastric Emptying Test, a test where you eat something that has a radioactive dye in it and then you lie on a table as a series of x-rays are taken to monitor how your stomach is working. I told him that I had months ago (roughly in June), but had never heard any results, so I had assumed that everything was alright because that is generally how it works within the Kaiser system--you don't hear anything, that means the test was fine. So my Neurologist looks up the results of the test and discovers...I had ABNORMAL results! This gives me the diagnosis of Gastroparesis. Here is the definition of Gastroparesis according to the Mayo Clinic: Gastroparesis is a condition in which the muscles in your stomach don't function normally.
Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.
I am already taking one of the two suggested medications for this condition, but it doesn't, obviously, seem to be doing it's job. Just in the last week things seem to have gotten worse as far as my stomach is concerned. I have officially lost 60 pounds, which is nice, but I've done it in the most unhealthy way possible. Definitely not by choice! My Neurologist is sending me to see a Gastrointerologist (G.I doctor) in the hopes that he will be able to help me get this Gastroparesis under control. I don't know if I'm considered as having a mild, moderate, or sever form of the condition; I guess I'll find out when I see the G.I doctor. My Neurologist said that this condition could be/is related to the autonomic nervous system and that I might have what is called autonomic neuropathy. Autonomic neuropathy is defined by the Mayo clinic as: Autonomic neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.It isn't a specific disease, instead autonomic neuropathy refers to damage to the autonomic nerves. This damage disrupts signals between the brain and portions of the autonomic nervous system, such as the heart, blood vessels and sweat glands, resulting in decreased or abnormal performance of one or more involuntary body functions. Autonomic neuropathy can be a complication of a number of diseases and conditions. And some medications can cause autonomic neuropathy as a side effect. Signs, symptoms and treatment of autonomic neuropathy vary depending on the cause, and on which nerves are affected. In order to check to see if I have this problem, my Neurologist is going to do a nerve conduction test on me at the end of this month, because it can effect not only my stomach (like it is with the gastroparesis), but my arms and legs as well.
Mentally, emotionally, and spiritually I am hanging in there fairly well. I know that God has a reason for this happening in my life and He won't give me more than I can handle. I'm a tough ol' bird--I think I get that from my grandma--but I do get lonely out here sometimes. I know that my friends have families, jobs, and live of their own to live and the last thing on their mind is to visit a sick friend that lives in the sticks...but at the same time I can't help but feel forgotten some times. I don't hold it against anyone, it's not in my nature to do that, so this is in no way meant to be a guilt trip on anyone.
Anyhow, that is the scoop for right now. Oh! I almost forgot! My Neurologist is referring me out to Kaiser L.A to be looked at by them. Just to make sure that he isn't missing anything...it's a good thing. He's the first one that's really taking my illness seriously aside from my primary care doctor. Okay, that is it for now. I'll try to write more often again. I backed off because there's only so much you can write about throwing up and being dizzy...I appreciate all of the prayers!
Saturday, September 11, 2010
Wednesday, August 25, 2010
The Latest News, Since There Hasn't Been Much To Report Until Now
I know it might seem as though I have completely dropped off the radar, but I'm still here. I'd like to tell you all that I've had a miraculous healing, but, sadly, that isn't the case. For a while there I was in what you could call Kaiser-limbo (sorry Mom), but then I finally had to put my foot down and call Member Services and this is the lowly tale: My primary doctor ordered an MRI of my spine to see if there was any plaque on it and a couple of days before my having said MRI, I read an article that it's best to have those kinds of MRIs done with contrast due to the patient's breathing and the pumping of the heart tending to blur the outcome. So the next morning I call the appointment center to leave a message for my doctor, only to find out that she was going to be out of office until after my MRI. So, on a whim, I asked if there were any earlier openings with the chief of Neurology (I already had an appointment for August 23rd). The call center person says: "You don't have an appointment with the Neurologist on the 23rd," to which I replied "Yes I do!" So she puts me on hold for a minute while she looks on her computer and when she comes back she says: "On one system it says that you do have an appointment and on the other system it says that you don't, which means that your appointment has been canceled." Imagine my HORROR! She said the next available appointment that the chief had was for September 20th! Naturally, being me, I started to cry! I accepted the appointment, but I told her that I couldn't understand why my appointment had been canceled and nobody had notified me. So when Member Services opened (the little stinkers don't open until 9am and don't answer their phones until well after that), I called and filed a complaint. The person I talked with PROMISED that a supervisor would be calling me back THAT day, so I waited all day to be called back and received NO call. So, the next day, I called again and talked with someone else and was told that it takes 3-5 days to receive a call back on a complaint. I told her, that's all well and good, but I was promised a call back THAT DAY and did not receive one. If the woman I had spoken with had given me her name, I would have filed a complaint against her, but she didn't. I told her that I feel as though Kaiser is waiting for me to die and, essentially, I am slowly dying because I do not eat much of anything, so I am slowly wasting away, so she gave me my case manager's number, but patched me through to her voice mail and I left her a message. THREE HOURS LATER she calls me back and I give her my grievances.
The next day my case manager calls me back and says she can get me in to see the chief of Neurology on August 29th, so I accept the appointment. Then about three or four days later, she calls again and can get me in the next day! So, when I go to see the Neurologist, I check in and put my slip in the box and when the nurse pokes her head out and gets it, she turns back into the office and says: "She has arrived!" All snooty! Like I've done something personally offensive against her or something! At any rate, the chief took almost an hour looking me over and said that he doesn't think that I have MS (Multiple Sclerosis), but that he's not really sure what is going on with me. He did blood work and ordered another MRI (but called it an MRV) to see how the blood is draining from my brain. He was also the first Neurologist to actually watch me walk down the hall and see how off my gait is, so he's sending me to physical therapy, though that has yet to happen.
We got the results back from my MRV (MRI) and it came back "unremarkable", which is code for "normal". It's good news, but when you have migraines that last for days on end and lay you out flat (like I'm going through right now [or else I wouldn't be typing this at nearly 4am]), it really kind of baffles you. My blood work, however, came back showing that my folic acid, thiamine, and vitamin B1 are all low, so I have to take a vitamin B complex which is turning out to be rather complex (insert corny drum beat here). The thing is, you have to take it with a meal, I don't eat, ergo, a problem. I feel so...sick when I take it, it's not even funny, but it's the only thing that has everything in it that I need, so it's been kind of rough. I'm doing my best to tough it out until I see the Neurologist on the 7th and see what he has to say...maybe he has a better solution...I don't know.
That's the scoop for now. I hadn't written for a while because you can only write about bumping into the walls and throwing up so much before you have people doing the same thing!
The next day my case manager calls me back and says she can get me in to see the chief of Neurology on August 29th, so I accept the appointment. Then about three or four days later, she calls again and can get me in the next day! So, when I go to see the Neurologist, I check in and put my slip in the box and when the nurse pokes her head out and gets it, she turns back into the office and says: "She has arrived!" All snooty! Like I've done something personally offensive against her or something! At any rate, the chief took almost an hour looking me over and said that he doesn't think that I have MS (Multiple Sclerosis), but that he's not really sure what is going on with me. He did blood work and ordered another MRI (but called it an MRV) to see how the blood is draining from my brain. He was also the first Neurologist to actually watch me walk down the hall and see how off my gait is, so he's sending me to physical therapy, though that has yet to happen.
We got the results back from my MRV (MRI) and it came back "unremarkable", which is code for "normal". It's good news, but when you have migraines that last for days on end and lay you out flat (like I'm going through right now [or else I wouldn't be typing this at nearly 4am]), it really kind of baffles you. My blood work, however, came back showing that my folic acid, thiamine, and vitamin B1 are all low, so I have to take a vitamin B complex which is turning out to be rather complex (insert corny drum beat here). The thing is, you have to take it with a meal, I don't eat, ergo, a problem. I feel so...sick when I take it, it's not even funny, but it's the only thing that has everything in it that I need, so it's been kind of rough. I'm doing my best to tough it out until I see the Neurologist on the 7th and see what he has to say...maybe he has a better solution...I don't know.
That's the scoop for now. I hadn't written for a while because you can only write about bumping into the walls and throwing up so much before you have people doing the same thing!
Tuesday, July 27, 2010
::SIGH::
Well, it has been almost 6 months since I've gotten this illness and still the doctors don't have a label for what it is that is wrong with me. Some are thinking that it is M.S (Multiple Sclerosis), but the Neurologists just are not getting on board and doing the one test, a spinal tap, that would really give us the answer. I'm hardly eating anything now-a-days and have lost 50 pounds because of this illness. My left arm and leg don't really work all that well, but I manage the best that I can to get around and do the things that I want to do...until I'm just too tired to do them. My spirits, for the most part, are high. The only time they are down is when I have to deal with the doctors that are so narrow minded or people who are narrow minded...but I politely smile and nod and remind myself to pray for them and not punch them! (That was a joke people, lighten up!) That's about it for now.
Monday, July 5, 2010
It's been a LONG time, I know!
Sorry it's been so long since I've blogged, but a lot has happened since the last time I dropped by. I've had a lot of doctor's visits, planned and unplanned and then I actually made an attempt at having a life and left town for the weekend. Since I didn't have the VNG, I had a REALLY hard time readjusting to my medications again and ended up in the ER on June 9th because I had been vomiting for a week and a half straight. I spent 9 hours in the ER hooked up to an IV, but they finally got the vomiting under control and sent me home.
Then I had my 2nd opinion consult with the neurologist which basically turned out to be a waste of $10 because she gave me the same diagnosis: vertigo, migraines, balance disorder. Oh, wait, she added on fatigue too. She was completely nonplussed by my tingling hands and feet, my slurred speech, my auditory processing issues, and memory loss. Needless to say, I left that appointment crying in frustration. It's not like I'm wanting the doctors to diagnose me with some horrific disease, but I have serious reservations that what's going on with me is just vertigo.
Then about a week ago I had my 2nd opinion with another ENT doctor that specializes in vertigo. He listened to everything I had to say, my symptoms, family history, looked in my ears, watched me walk, watched my hands shake and twitch, blah, blah, blah. He said that it's not my ears that is causing my problem because if it were, it would have resolved itself by now. He said that, in his opinion, it sounds like a degenerative neurological disorder like MS or something like it, based on the symptoms that I described and what he saw happening.
At this point it's The Waiting Game With Christine Rachuy. If I don't show any improvements by mid July, we're calling my primary doctor and asking to be referred to where the money is: Orange County or L.A. If I'm successful in making it out there and I don't really get anywhere with them, then it's to the insurance office and making a case that we have exhausted the Kaiser system and demand that, on their dime, that they send me to UCLA or the Mayo Clinic to try and figure this thing out because I am slowly wasting away. It's getting to the point of ridiculousness.
Over the 4th of July weekend, Mom and I went to a music festival called Spirit West Coast up in Monterey. I did all right on the 1st and 3rd day, but we had to leave the 2nd day because I got pretty sick for some reason and spent a lot of time with my head inside of a trashcan. All-in-all, I had a good time, but this illness is really the pits because it makes me so tired and I cannot stand up for very long, can't think straight, can't talk straight...it's just frustrating in general.
Anyhow, that's the skinny on what has been going on with me. I'll let you all know what the outcome of my ultra sound is when they tell, if they tell me anything.
Then I had my 2nd opinion consult with the neurologist which basically turned out to be a waste of $10 because she gave me the same diagnosis: vertigo, migraines, balance disorder. Oh, wait, she added on fatigue too. She was completely nonplussed by my tingling hands and feet, my slurred speech, my auditory processing issues, and memory loss. Needless to say, I left that appointment crying in frustration. It's not like I'm wanting the doctors to diagnose me with some horrific disease, but I have serious reservations that what's going on with me is just vertigo.
Then about a week ago I had my 2nd opinion with another ENT doctor that specializes in vertigo. He listened to everything I had to say, my symptoms, family history, looked in my ears, watched me walk, watched my hands shake and twitch, blah, blah, blah. He said that it's not my ears that is causing my problem because if it were, it would have resolved itself by now. He said that, in his opinion, it sounds like a degenerative neurological disorder like MS or something like it, based on the symptoms that I described and what he saw happening.
At this point it's The Waiting Game With Christine Rachuy. If I don't show any improvements by mid July, we're calling my primary doctor and asking to be referred to where the money is: Orange County or L.A. If I'm successful in making it out there and I don't really get anywhere with them, then it's to the insurance office and making a case that we have exhausted the Kaiser system and demand that, on their dime, that they send me to UCLA or the Mayo Clinic to try and figure this thing out because I am slowly wasting away. It's getting to the point of ridiculousness.
Over the 4th of July weekend, Mom and I went to a music festival called Spirit West Coast up in Monterey. I did all right on the 1st and 3rd day, but we had to leave the 2nd day because I got pretty sick for some reason and spent a lot of time with my head inside of a trashcan. All-in-all, I had a good time, but this illness is really the pits because it makes me so tired and I cannot stand up for very long, can't think straight, can't talk straight...it's just frustrating in general.
Anyhow, that's the skinny on what has been going on with me. I'll let you all know what the outcome of my ultra sound is when they tell, if they tell me anything.
It's been a LONG time, I know!
Sorry it's been so long since I've blogged, but a lot has happened since the last time I dropped by. I've had a lot of doctor's visits, planned and unplanned and then I actually made an attempt at having a life and left town for the weekend. Since I didn't have the VNG, I had a REALLY hard time readjusting to my medications again and ended up in the ER on June 9th because I had been vomiting for a week and a half straight. I spent 9 hours in the ER hooked up to an IV, but they finally got the vomiting under control and sent me home.
Then I had my 2nd opinion consult with the neurologist which basically turned out to be a waste of $10 because she gave me the same diagnosis: vertigo, migraines, balance disorder. Oh, wait, she added on fatigue too. She was completely nonplussed by my tingling hands and feet, my slurred speech, my auditory processing issues, and memory loss. Needless to say, I left that appointment crying in frustration. It's not like I'm wanting the doctors to diagnose me with some horrific disease, but I have serious reservations that what's going on with me is just vertigo.
Then about a week ago I had my 2nd opinion with another ENT doctor that specializes in vertigo. He listened to everything I had to say, my symptoms, family history, looked in my ears, watched me walk, watched my hands shake and twitch, blah, blah, blah. He said that it's not my ears that is causing my problem because if it were, it would have resolved itself by now. He said that, in his opinion, it sounds like a degenerative neurological disorder like MS or something like it, based on the symptoms that I described and what he saw happening.
At this point it's The Waiting Game With Christine Rachuy. If I don't show any improvements by mid July, we're calling my primary doctor and asking to be referred to where the money is: Orange County or L.A. If I'm successful in making it out there and I don't really get anywhere with them, then it's to the insurance office and making a case that we have exhausted the Kaiser system and demand that, on their dime, that they send me to UCLA or the Mayo Clinic to try and figure this thing out because I am slowly wasting away. It's getting to the point of ridiculousness.
Over the 4th of July weekend, Mom and I went to a music festival called Spirit West Coast up in Monterey. I did all right on the 1st and 3rd day, but we had to leave the 2nd day because I got pretty sick for some reason and spent a lot of time with my head inside of a trashcan. All-in-all, I had a good time, but this illness is really the pits because it makes me so tired and I cannot stand up for very long, can't think straight, can't talk straight...it's just frustrating in general.
Anyhow, that's the skinny on what has been going on with me. I'll let you all know what the outcome of my ultra sound is when they tell, if they tell me anything.
Then I had my 2nd opinion consult with the neurologist which basically turned out to be a waste of $10 because she gave me the same diagnosis: vertigo, migraines, balance disorder. Oh, wait, she added on fatigue too. She was completely nonplussed by my tingling hands and feet, my slurred speech, my auditory processing issues, and memory loss. Needless to say, I left that appointment crying in frustration. It's not like I'm wanting the doctors to diagnose me with some horrific disease, but I have serious reservations that what's going on with me is just vertigo.
Then about a week ago I had my 2nd opinion with another ENT doctor that specializes in vertigo. He listened to everything I had to say, my symptoms, family history, looked in my ears, watched me walk, watched my hands shake and twitch, blah, blah, blah. He said that it's not my ears that is causing my problem because if it were, it would have resolved itself by now. He said that, in his opinion, it sounds like a degenerative neurological disorder like MS or something like it, based on the symptoms that I described and what he saw happening.
At this point it's The Waiting Game With Christine Rachuy. If I don't show any improvements by mid July, we're calling my primary doctor and asking to be referred to where the money is: Orange County or L.A. If I'm successful in making it out there and I don't really get anywhere with them, then it's to the insurance office and making a case that we have exhausted the Kaiser system and demand that, on their dime, that they send me to UCLA or the Mayo Clinic to try and figure this thing out because I am slowly wasting away. It's getting to the point of ridiculousness.
Over the 4th of July weekend, Mom and I went to a music festival called Spirit West Coast up in Monterey. I did all right on the 1st and 3rd day, but we had to leave the 2nd day because I got pretty sick for some reason and spent a lot of time with my head inside of a trashcan. All-in-all, I had a good time, but this illness is really the pits because it makes me so tired and I cannot stand up for very long, can't think straight, can't talk straight...it's just frustrating in general.
Anyhow, that's the skinny on what has been going on with me. I'll let you all know what the outcome of my ultra sound is when they tell, if they tell me anything.
Wednesday, June 9, 2010
Cancellations
Last week was a hard week for me. I had to wean off of my meds that had finally gotten me sleeping through the night and not upchucking every two seconds so that I could have a VNG (videonystagmagogrophy) test on the 8th. I did the best that I could weaning myself off, but in order to make it to church on Sunday I HAD to take an anti-emetic medication, but by Monday morning, I was a mess. I was throwing up bright yellow bile (TMI, I know) and in so much pain.
My mom called the audiologist and he said that it sounded like with or without the medication I was too sick to undergo the VNG, so I ended up not having that test. He said it would be better for me to have it down the road when I’m not so ill. I have officially lost 40 pounds because I cannot eat much of anything, partially due to the illness, partially due to one of the medications that I am taking. We all know I’m a beefy girl and can stand to lose a few 40 pounds, so it’s no big deal, but the method in which I am losing the weight is the problem. I am basically starving myself to death, even though I try to force myself to eat a little something; and I still throw up every now and again, but I’ve got that down to such a science, I need to put it down as a skill on my resume.
I just need people to understand that, while I may not LOOK ill, I really AM. They just don’t know what it is yet. I had another MRI on Monday that was focused in on my inner ears to see if there are any tumors or malformations or anything of the inner ears and I see my new Neurologist this Thursday to see what she thinks of all of this nonsense. I’m realistic that this could be permanent. Naturally, I want to be healed, but if that’s not in God’s plan for me, I’m down with it, because there’s nothing that I can do to change it. I’ve already decided that if I’m going to be in a wheelchair I’m going have it upholstered with zebra print or if I have to use arm canes I want them spray painted with zebra stripes, maybe some cute skulls and cross bones, something to make it Christine! You all know that I take things in stride pretty well, so that’s what I’m doing now.
That’s the skinny for now.
My mom called the audiologist and he said that it sounded like with or without the medication I was too sick to undergo the VNG, so I ended up not having that test. He said it would be better for me to have it down the road when I’m not so ill. I have officially lost 40 pounds because I cannot eat much of anything, partially due to the illness, partially due to one of the medications that I am taking. We all know I’m a beefy girl and can stand to lose a few 40 pounds, so it’s no big deal, but the method in which I am losing the weight is the problem. I am basically starving myself to death, even though I try to force myself to eat a little something; and I still throw up every now and again, but I’ve got that down to such a science, I need to put it down as a skill on my resume.
I just need people to understand that, while I may not LOOK ill, I really AM. They just don’t know what it is yet. I had another MRI on Monday that was focused in on my inner ears to see if there are any tumors or malformations or anything of the inner ears and I see my new Neurologist this Thursday to see what she thinks of all of this nonsense. I’m realistic that this could be permanent. Naturally, I want to be healed, but if that’s not in God’s plan for me, I’m down with it, because there’s nothing that I can do to change it. I’ve already decided that if I’m going to be in a wheelchair I’m going have it upholstered with zebra print or if I have to use arm canes I want them spray painted with zebra stripes, maybe some cute skulls and cross bones, something to make it Christine! You all know that I take things in stride pretty well, so that’s what I’m doing now.
That’s the skinny for now.
Saturday, June 5, 2010
Struggling…Suffering….But Getting Through
This week has been a really rough one for me. I am having an MRI on Monday that will be focused in on my inner ears to see if there are tumors or malformations of the boney structures of my ears. Then, on Tuesday, I will be having a test called a VNG test (Google it); which requires me to be completely off of all of my medication 48 hours before the test, so tonight is my last night taking my meds until after the test on Tuesday. I am already struggling. I’m having a hard time walking, talking, and focusing. I tend to doze off and cry a lot because I am in pain with a migraine, but there is nothing that I am allowed to take for it except Advil, which barely touches it; but I am getting through.
Please remember me in prayer because, as much as I am putting up a front and really am pushing to get through it, I am having a hard time. They said they VNG test will make my symptoms worse, so that means Barf City USA here I come, yippe skipee! On a good note: I’ve dropped 40lbs, but the means by which I have lost the pounds aren’t good, but, hey, at least I’m getting skinnier!
I am also now a published freelance writer online on a sight called suite101.com. You kinda have to fish around to find me. I’ve had 4 articles published so far and am working on my 5th one right now. Like my blog, I have to work on Word so that I can make the font big enough for me to see the words on the screen because my sight is so bad, but at least I’m getting something accomplished.
Don’t be surprised if you see me in a wheelchair tomorrow. I just cannot walk long distances anymore. My balance, on or off the medication, has gotten so bad that I run the risk of being flat on my face, so a wheelchair and I have become friends. See y’all tomorrow….hopefully!
Please remember me in prayer because, as much as I am putting up a front and really am pushing to get through it, I am having a hard time. They said they VNG test will make my symptoms worse, so that means Barf City USA here I come, yippe skipee! On a good note: I’ve dropped 40lbs, but the means by which I have lost the pounds aren’t good, but, hey, at least I’m getting skinnier!
I am also now a published freelance writer online on a sight called suite101.com. You kinda have to fish around to find me. I’ve had 4 articles published so far and am working on my 5th one right now. Like my blog, I have to work on Word so that I can make the font big enough for me to see the words on the screen because my sight is so bad, but at least I’m getting something accomplished.
Don’t be surprised if you see me in a wheelchair tomorrow. I just cannot walk long distances anymore. My balance, on or off the medication, has gotten so bad that I run the risk of being flat on my face, so a wheelchair and I have become friends. See y’all tomorrow….hopefully!
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