Big medical news on the Gina Front
This was written on 4.3.08 - 4.5.08
6 months ago (9.20.07) I had some very serious vertigo that lasted in it's severity for about 8 days. I could not walk as the whole world was spinning, I spent the whole time in bed. It was very overwhelming, it wears on you to have the walls spinning all the time meanwhile your mind feels perfectly fine. You can't see, you can't do anything, or go anywhere the world is a strange moving swish of motion and it doesn't stop, it just keeps on moving. On the second night I did go to the ER but they were so very full that everyone in the waiting room who was there before us, were still sitting in their chairs and new people were arriving to lay on the floor as there was no space. After trying to sit there for 3 hours I left, mostly because I was too uncomfortable with everyone moving around in this visual pool of motion I was living in, and wanted to come home and lay down in bed. Since that was on a Friday, I could only get an appointment on Monday to see the Dr - we went with Jim driving (there is no way one could drive or even take the dog out or get your food in this condition - basically you look like an inebriated person and your body and vision feel like it), and took a little fall in the parking lot! I didn't hurt myself I landed on my bun while I was getting out. So we very carefully make it into to the Dr.
End all be all: I was told it was labyrinthitis (although I hadn't had a bug or head injury which usually accompanies an onset) - it could be swelling and there are those calcium stones in your ears that can break off and roll around in your inner ear (which they can't reach into because it's too dangerous in there) when this happens it get's the signals all mixed up and your brain can't tell the difference between left, right, up and down. She said that they don't have a cure for it but she did set me up with an appointment at the neurologists. I was worried about being able to travel on our up coming trip back east to attend a nanotechnology conference and visit family - so I was glad to have the appointment. By the time I got to the neurologists I was feeling better and she did some physical tests and didn't seem to disagree with the Dr's opinion. She did say that if I felt anything else after our trip to call. I was feeling better before the trip enough to get back into normal behavior except that I had some visual things happening in the store a few times.
We went on our trip and everything was fine although there was one little thing. I usually am the type to go on roller coaster rides (if you know me you may know this!) and for example in the past at the Science Center I wanted to go on the scariest ride and (some of you may recall this) another time I went back on the "gyro bike" three times (some of you may recall this) to try and go faster and longer to try and reach that G-force! Well on the trip I tried the bungee jump bounce and I had an immediate reaction to it, it felt so wrong and my body could not handle it, I had to ask the man to let me down. Very unusual for me. So I figured this labyrinthitis had really effected my equilibrium. I decided I wasn't going to go on these types of contraptions anymore. So we came home and then everything was all back to normal and I was fine.
So now six months later, I start feeling "funny" in my head, for a day or two and by the 22nd of March I know that it's back. When I move my head or body the world is shifting and my eyes can not focus. Everything is spinning and I can't catch anything visually, I'm off balance and it makes me queasy because that extreme simulation of motion causes the feeling of seasickness. I find my self in bed again, unable to function, in this misjudgment of space I gave myself a little bump on the head. Now I did read online that labyrinthitis can reoccur so I wanted to go to the Dr's again and see if there was anything we can do about it. We called the neurologist back but they said that the referral from my gp ran out and that I needed to go back there first. So we made an appointment there, then the neurologist called back to say they could wing it. So we went to both. The general practitioner was about a week before the neurologist.
Again the gp described the inner ear mechanisms. Since I had been reading up on labyrinthitis and had learned that sometimes it can be bacterial, or viral I asked for an antibiotic at this point I was willing to try anything to make this stop. She said that she didn't think it would do anything but that she would oblige me. I also mentioned that I read about cat scans and MRI's. She wrote me up an MRI to be taken before my neurologist's appointment.
So I went in a day before to get the MRI brain scan, (on Wednesday 4.2.08) and afterwards I said to the lady who was taking the scans "I know you can't give us an official detailed report or anything, but in general how did everything look?" She said "well I can tell you I didn't see any large masses or any strokes that made me think oh that poor girl but the radiologist will look for more subtle things". I was very happy to hear that. I assumed I would have to deal with this labyrinthitis and do the physical therapy sessions that they had told me about to try and cope with it, which would be a drag but not the worse thing.
(On Thursday 4,3.08) The next day- I went to the neurologist for the results. She tests my legs and my arms and has me watch her finger move around. I tell her that I notice that the focus never comes in when she has me follow to the left, it seems worse on that side. She sits in her chair and starts rolling over to her computer, she asks "did your general practitioner doctor go over the MRI results with you". I said no. For a moment I thought, "something to go over?" Then she said that the MRI will explain why this is happening to me, well then I knew that there was something. She then says that my MRI is indicative of multiple sclerosis, what a shock!
Honestly, after the MRI, only in the very back of my mind - I thought that if it was anything more serious than the labyrinthitis, it might be something like a rupture that they could go in and patch up, but I hadn't even considered MS. My eyes started watering spilling down my face and Jim came over to put his arm around me and hold my hand. "I'm alright, I'm okay" I say pushing myself through this - I suck it up. Jim helps me walk over to the chair by the computer and she shows me my MRI and this bright spot on my brain, she says that this is an active lesion that the contrast (MRI dye) picked up, she then continues to flip through different views of my brain and she's pointing out more lesions, 6 of them. I was just trying to keep myself collected so I could get as much information as I could. She realized that they were all on the left side of my brain saying that might explain why I am walking to the left and that the visual is harder to ever focus on when I turn to the left.
The active one the bigger brighter one is the one that is doing this to me now, causing this spinning visual off balance experience I am currently having. The other ones were not highlighted by the contrast dye and were smaller, she said these were older, I asked how old she said she didn't know. But she does know that the active one began sometime in the last 3 months because that's the length of time that they are picked up by the contrast dye, any older than that and they are not highlighted, like my other ones. I am assuming that the other ones must be at least six months old because of the previous episode in which we thought it was labyrinthitis. But I don't know how long this has been going on before that. She also noted that the active one is in the cerebellum area of my brain which is responsible for your motion and balance.
So she said we are going to do more tests: a lumbar (commonly known as a spinal tap), some blood work, an MRI of my neck (there could be more spots there) and an optic nerve test. Many people have these visual problems with MS, she said some even lose their vision, ms is within the central nervous system and the optic nerve is too. but it's not just the optic nerve, any nerve with a myelin sheath in the central nervous system is game for MS, it's an equal opportunity offender.
She is also going to give me a steroid shot tomorrow and for two more days consecutively to treat my immediate issue which is now called "MS exacerbation" rather than labyrinthitis - I didn't even have labyrinthitis after all. What happened 6 months ago, was all because of this. Apparently they count two exacerbations along with the MRI lesions as MS, those are the requirements - there is no mention of it before they are met, at least in my case. This explains why the last visit I had with her went as it did, I hadn't had a second episode yet, nor did we have the MRI. She said that these shots that I will have over the next 3 days will be intense bursts to help me, I asked if it will be immediate and she said it could take a week or so. I'm going to have side effects, but I think it's a fair trade.
She said there would be more long term treatments such as self injections that vary from daily to weekly that cause flu symptoms, irritability, hunger and insomnia every time. I already have that last one - well sort of, I have (an actual term here) "delayed sleep phase syndrome" (DSPS) which is really like a shift in sleeping times. I go to bed later and I also wake up later, unlike insomniacs who go to bed late and still manage to wake up early resulting in lack of sleep. No biggie really since I am an animator from a home office. I don't know much more than that about the long term jazz, were just getting started here. But after this news we did have a genuine DRs notice/excuse to order in, I had steak and Jim had salmon, it was funny that we did that and it took the edge off. It was yummy too.
So MS is a chronic auto immune system disease in which your immune system begins to attack components of your body as if they're foreign. This causes my white blood cells to attack the myelin sheath that surrounds neurons, and this is like a conduit, while it's being eaten away it is breaking down the communication in between different parts of my brain and my body. Since it attacks different people differently there appears to be a myriad of levels and problems. There is no cure but I am hoping that I have a more mild version. For now I,.. hope. I think it's always a shock when you get news like this but it really took me a back because I am still young but come to find out the majority of MS targets people when they are between the ages of 20 to 40, and more women than men.
A weird irony is in 2004 when PC world asked me for some animations I decided to do one on a nanorobot that could repair the myelin layer destroyed by the effects of multiple sclerosis. Perhaps I should have made a nanorobot that cleans up toe jam or something.... ah the what if's (okay, yes, I need my humor right now!).
(Update: So now it is Saturday 4.5.08) - It wasn't exactly a shot, it was an hour long infusion. I had one yesterday (Friday 4.4.08) and one today. It was a room just like the rooms Jim was in for a lot of his multiple myeloma infusions except there he was holding my hand, a real role reversal. Some times the world is just so, I don't know, different. Everything can change in a moment. One day I'm thinking I've got a little calcium stone rolling in my ear, and then the next day they tell me I have MS! Please forgive me, as I write this it's two days in and I'm still in the "what?" phase right now. But, I can tell you this. I'm going to keep doing what I'm doing, I've got people to love and I have a lot of plans, big animation projects, stories that might turn there or into books, nanotechnology applications to support, I've got a vision and I'm going to meet it, I've got dreams and I'm going to keep on going. I've been hard at work on these and I'm not going to stop. This I know. Jim and I will conquer all this fragile biology and hopefully see the day that some emerging technologies will make this a world that has a whole lot less disease. And, with Jim by my side, well he is just the most selfless person, he is genuine TLC. The BEST.
Alright, now where was I... so yesterday the infusion they hook you up to an IV of a steroid called solu-medrol and after a while you start to taste metal and medicine, then you breathe it out your nose. Jim went to the vending machine and got some gum for me, that helped. I felt a little heavy when I was sitting there but not much else, until we started down the hall way! Oh stars and topsy turvy, and the tummy oh my! Jim got me to the car and got me home. I was a rag doll for a while, I was laughing at how I was trying to pet my dog and my arm was just flopping around! My legs cramped up, my voice became sluggish. Day one, guess what you've got MS - you're sick, day two they give you a drug that makes you feel really sick! : ) As the night went on the effects did lessen some.
When I woke up this morning I felt better from the infusion effects and I did still have my visual problem but it seems different some how, so something is happening. Today we had to go to a different place (it was actually in a cancer section of a different hospital) to get the infusion because it is the weekend and you need these infusions in three consecutive days - and since I've been unable to see and walk properly since March 22nd they wanted to help me as soon as they could, so they called around for us. Thank you!
Today (4.5.08) for the second infusion Jim and I talked and it made the time pass. I knew what to expect when I got up to leave and it was quite a load but not as severe as yesterday. Tomorrow I go for my third and last for now. I think the effects of the drug then should clear up in a day or two and it's supposed to help with the visual issues over the next week or so. The purpose of these three infusion is to shut down the inflamation/swelling that is induced by the attack of the cells on the nueron (it doesn't cure the basic problem but the effect of the problem - the white blood cells attacking the nerves cause a swelling as well, this is what is treated by the infusion - the swelling).
As for what comes next I think that after the other tests they are going to tell me what I need to do for long term - like the ones mentioned above. They have nurses that come out to show you how - remind you of anything (or someone)? Now she did mention that some of the tests would make sure that it's not something else mimicking the signs of MS, I don't know what those are, and while I feel a sliver of hope she did seem pretty convinced about what is going on. She said that about 20% of MS people are on the low end of symptoms while 80% go on to more serious disabilities. Of course these vary in time spans too. No one has given me any documentation of any sorts, (we might have been spoiled at the super duper professionals at the Hutch where Jim was being treated?) so I did a little Google research, and it's a little scary to read some of that stuff, paralysis, loss of speech etc, so I'm not sure I'm ready for all that yet. For right now, I'm going to wait for more information and if I have to be in a percentile, I'll hope for the low one.
I think I'm processing this pretty well, sometimes it just rises up to the surface but I tell myself that it won't help me any and will just give me a headache, and that does help. What really keeps me in check is that it's not the worse thing they could have told me, they could have said I had some form of cancer in there that has spread and I only have months to live. Everything is relative and I've got to tell you, thinking that way really helps by putting things in perspective. So I'm shocked, its a bummer, yes my nose is a little red, but when it happens to you, you realize why everyone who goes through something like this becomes brave and positive, it's because you have to, you just have to!
So why is this here at Jim's blog? Well since his last (and 2nd) stem cell transplant for his multiple myeloma cancer he is doing so well, hooray! So to help fill content here : ) I thought I would merge this blog into "my husband's health and my health" or something along those lines. It was so funny when we were getting the MRI results Jim said "we'll be the multiple multiples!", him with multiple myeloma and me with multiple sclerosis - isn't that something. So here you are at the multiple multiples blog. Anyway, I'm okay, my mom is okay (and oh so very sweet and uplifting) and the hubby is okay. I'll be coming to update what is going on here at the blog. Hopefully it's some good stuff. And I know that there is going to be some because life is oh so full of good stuff. Gina
6 months ago (9.20.07) I had some very serious vertigo that lasted in it's severity for about 8 days. I could not walk as the whole world was spinning, I spent the whole time in bed. It was very overwhelming, it wears on you to have the walls spinning all the time meanwhile your mind feels perfectly fine. You can't see, you can't do anything, or go anywhere the world is a strange moving swish of motion and it doesn't stop, it just keeps on moving. On the second night I did go to the ER but they were so very full that everyone in the waiting room who was there before us, were still sitting in their chairs and new people were arriving to lay on the floor as there was no space. After trying to sit there for 3 hours I left, mostly because I was too uncomfortable with everyone moving around in this visual pool of motion I was living in, and wanted to come home and lay down in bed. Since that was on a Friday, I could only get an appointment on Monday to see the Dr - we went with Jim driving (there is no way one could drive or even take the dog out or get your food in this condition - basically you look like an inebriated person and your body and vision feel like it), and took a little fall in the parking lot! I didn't hurt myself I landed on my bun while I was getting out. So we very carefully make it into to the Dr.
End all be all: I was told it was labyrinthitis (although I hadn't had a bug or head injury which usually accompanies an onset) - it could be swelling and there are those calcium stones in your ears that can break off and roll around in your inner ear (which they can't reach into because it's too dangerous in there) when this happens it get's the signals all mixed up and your brain can't tell the difference between left, right, up and down. She said that they don't have a cure for it but she did set me up with an appointment at the neurologists. I was worried about being able to travel on our up coming trip back east to attend a nanotechnology conference and visit family - so I was glad to have the appointment. By the time I got to the neurologists I was feeling better and she did some physical tests and didn't seem to disagree with the Dr's opinion. She did say that if I felt anything else after our trip to call. I was feeling better before the trip enough to get back into normal behavior except that I had some visual things happening in the store a few times.
We went on our trip and everything was fine although there was one little thing. I usually am the type to go on roller coaster rides (if you know me you may know this!) and for example in the past at the Science Center I wanted to go on the scariest ride and (some of you may recall this) another time I went back on the "gyro bike" three times (some of you may recall this) to try and go faster and longer to try and reach that G-force! Well on the trip I tried the bungee jump bounce and I had an immediate reaction to it, it felt so wrong and my body could not handle it, I had to ask the man to let me down. Very unusual for me. So I figured this labyrinthitis had really effected my equilibrium. I decided I wasn't going to go on these types of contraptions anymore. So we came home and then everything was all back to normal and I was fine.
So now six months later, I start feeling "funny" in my head, for a day or two and by the 22nd of March I know that it's back. When I move my head or body the world is shifting and my eyes can not focus. Everything is spinning and I can't catch anything visually, I'm off balance and it makes me queasy because that extreme simulation of motion causes the feeling of seasickness. I find my self in bed again, unable to function, in this misjudgment of space I gave myself a little bump on the head. Now I did read online that labyrinthitis can reoccur so I wanted to go to the Dr's again and see if there was anything we can do about it. We called the neurologist back but they said that the referral from my gp ran out and that I needed to go back there first. So we made an appointment there, then the neurologist called back to say they could wing it. So we went to both. The general practitioner was about a week before the neurologist.
Again the gp described the inner ear mechanisms. Since I had been reading up on labyrinthitis and had learned that sometimes it can be bacterial, or viral I asked for an antibiotic at this point I was willing to try anything to make this stop. She said that she didn't think it would do anything but that she would oblige me. I also mentioned that I read about cat scans and MRI's. She wrote me up an MRI to be taken before my neurologist's appointment.
So I went in a day before to get the MRI brain scan, (on Wednesday 4.2.08) and afterwards I said to the lady who was taking the scans "I know you can't give us an official detailed report or anything, but in general how did everything look?" She said "well I can tell you I didn't see any large masses or any strokes that made me think oh that poor girl but the radiologist will look for more subtle things". I was very happy to hear that. I assumed I would have to deal with this labyrinthitis and do the physical therapy sessions that they had told me about to try and cope with it, which would be a drag but not the worse thing.
(On Thursday 4,3.08) The next day- I went to the neurologist for the results. She tests my legs and my arms and has me watch her finger move around. I tell her that I notice that the focus never comes in when she has me follow to the left, it seems worse on that side. She sits in her chair and starts rolling over to her computer, she asks "did your general practitioner doctor go over the MRI results with you". I said no. For a moment I thought, "something to go over?" Then she said that the MRI will explain why this is happening to me, well then I knew that there was something. She then says that my MRI is indicative of multiple sclerosis, what a shock!
Honestly, after the MRI, only in the very back of my mind - I thought that if it was anything more serious than the labyrinthitis, it might be something like a rupture that they could go in and patch up, but I hadn't even considered MS. My eyes started watering spilling down my face and Jim came over to put his arm around me and hold my hand. "I'm alright, I'm okay" I say pushing myself through this - I suck it up. Jim helps me walk over to the chair by the computer and she shows me my MRI and this bright spot on my brain, she says that this is an active lesion that the contrast (MRI dye) picked up, she then continues to flip through different views of my brain and she's pointing out more lesions, 6 of them. I was just trying to keep myself collected so I could get as much information as I could. She realized that they were all on the left side of my brain saying that might explain why I am walking to the left and that the visual is harder to ever focus on when I turn to the left.
The active one the bigger brighter one is the one that is doing this to me now, causing this spinning visual off balance experience I am currently having. The other ones were not highlighted by the contrast dye and were smaller, she said these were older, I asked how old she said she didn't know. But she does know that the active one began sometime in the last 3 months because that's the length of time that they are picked up by the contrast dye, any older than that and they are not highlighted, like my other ones. I am assuming that the other ones must be at least six months old because of the previous episode in which we thought it was labyrinthitis. But I don't know how long this has been going on before that. She also noted that the active one is in the cerebellum area of my brain which is responsible for your motion and balance.
So she said we are going to do more tests: a lumbar (commonly known as a spinal tap), some blood work, an MRI of my neck (there could be more spots there) and an optic nerve test. Many people have these visual problems with MS, she said some even lose their vision, ms is within the central nervous system and the optic nerve is too. but it's not just the optic nerve, any nerve with a myelin sheath in the central nervous system is game for MS, it's an equal opportunity offender.
She is also going to give me a steroid shot tomorrow and for two more days consecutively to treat my immediate issue which is now called "MS exacerbation" rather than labyrinthitis - I didn't even have labyrinthitis after all. What happened 6 months ago, was all because of this. Apparently they count two exacerbations along with the MRI lesions as MS, those are the requirements - there is no mention of it before they are met, at least in my case. This explains why the last visit I had with her went as it did, I hadn't had a second episode yet, nor did we have the MRI. She said that these shots that I will have over the next 3 days will be intense bursts to help me, I asked if it will be immediate and she said it could take a week or so. I'm going to have side effects, but I think it's a fair trade.
She said there would be more long term treatments such as self injections that vary from daily to weekly that cause flu symptoms, irritability, hunger and insomnia every time. I already have that last one - well sort of, I have (an actual term here) "delayed sleep phase syndrome" (DSPS) which is really like a shift in sleeping times. I go to bed later and I also wake up later, unlike insomniacs who go to bed late and still manage to wake up early resulting in lack of sleep. No biggie really since I am an animator from a home office. I don't know much more than that about the long term jazz, were just getting started here. But after this news we did have a genuine DRs notice/excuse to order in, I had steak and Jim had salmon, it was funny that we did that and it took the edge off. It was yummy too.
So MS is a chronic auto immune system disease in which your immune system begins to attack components of your body as if they're foreign. This causes my white blood cells to attack the myelin sheath that surrounds neurons, and this is like a conduit, while it's being eaten away it is breaking down the communication in between different parts of my brain and my body. Since it attacks different people differently there appears to be a myriad of levels and problems. There is no cure but I am hoping that I have a more mild version. For now I,.. hope. I think it's always a shock when you get news like this but it really took me a back because I am still young but come to find out the majority of MS targets people when they are between the ages of 20 to 40, and more women than men.
A weird irony is in 2004 when PC world asked me for some animations I decided to do one on a nanorobot that could repair the myelin layer destroyed by the effects of multiple sclerosis. Perhaps I should have made a nanorobot that cleans up toe jam or something.... ah the what if's (okay, yes, I need my humor right now!).
(Update: So now it is Saturday 4.5.08) - It wasn't exactly a shot, it was an hour long infusion. I had one yesterday (Friday 4.4.08) and one today. It was a room just like the rooms Jim was in for a lot of his multiple myeloma infusions except there he was holding my hand, a real role reversal. Some times the world is just so, I don't know, different. Everything can change in a moment. One day I'm thinking I've got a little calcium stone rolling in my ear, and then the next day they tell me I have MS! Please forgive me, as I write this it's two days in and I'm still in the "what?" phase right now. But, I can tell you this. I'm going to keep doing what I'm doing, I've got people to love and I have a lot of plans, big animation projects, stories that might turn there or into books, nanotechnology applications to support, I've got a vision and I'm going to meet it, I've got dreams and I'm going to keep on going. I've been hard at work on these and I'm not going to stop. This I know. Jim and I will conquer all this fragile biology and hopefully see the day that some emerging technologies will make this a world that has a whole lot less disease. And, with Jim by my side, well he is just the most selfless person, he is genuine TLC. The BEST.
Alright, now where was I... so yesterday the infusion they hook you up to an IV of a steroid called solu-medrol and after a while you start to taste metal and medicine, then you breathe it out your nose. Jim went to the vending machine and got some gum for me, that helped. I felt a little heavy when I was sitting there but not much else, until we started down the hall way! Oh stars and topsy turvy, and the tummy oh my! Jim got me to the car and got me home. I was a rag doll for a while, I was laughing at how I was trying to pet my dog and my arm was just flopping around! My legs cramped up, my voice became sluggish. Day one, guess what you've got MS - you're sick, day two they give you a drug that makes you feel really sick! : ) As the night went on the effects did lessen some.
When I woke up this morning I felt better from the infusion effects and I did still have my visual problem but it seems different some how, so something is happening. Today we had to go to a different place (it was actually in a cancer section of a different hospital) to get the infusion because it is the weekend and you need these infusions in three consecutive days - and since I've been unable to see and walk properly since March 22nd they wanted to help me as soon as they could, so they called around for us. Thank you!
Today (4.5.08) for the second infusion Jim and I talked and it made the time pass. I knew what to expect when I got up to leave and it was quite a load but not as severe as yesterday. Tomorrow I go for my third and last for now. I think the effects of the drug then should clear up in a day or two and it's supposed to help with the visual issues over the next week or so. The purpose of these three infusion is to shut down the inflamation/swelling that is induced by the attack of the cells on the nueron (it doesn't cure the basic problem but the effect of the problem - the white blood cells attacking the nerves cause a swelling as well, this is what is treated by the infusion - the swelling).
As for what comes next I think that after the other tests they are going to tell me what I need to do for long term - like the ones mentioned above. They have nurses that come out to show you how - remind you of anything (or someone)? Now she did mention that some of the tests would make sure that it's not something else mimicking the signs of MS, I don't know what those are, and while I feel a sliver of hope she did seem pretty convinced about what is going on. She said that about 20% of MS people are on the low end of symptoms while 80% go on to more serious disabilities. Of course these vary in time spans too. No one has given me any documentation of any sorts, (we might have been spoiled at the super duper professionals at the Hutch where Jim was being treated?) so I did a little Google research, and it's a little scary to read some of that stuff, paralysis, loss of speech etc, so I'm not sure I'm ready for all that yet. For right now, I'm going to wait for more information and if I have to be in a percentile, I'll hope for the low one.
I think I'm processing this pretty well, sometimes it just rises up to the surface but I tell myself that it won't help me any and will just give me a headache, and that does help. What really keeps me in check is that it's not the worse thing they could have told me, they could have said I had some form of cancer in there that has spread and I only have months to live. Everything is relative and I've got to tell you, thinking that way really helps by putting things in perspective. So I'm shocked, its a bummer, yes my nose is a little red, but when it happens to you, you realize why everyone who goes through something like this becomes brave and positive, it's because you have to, you just have to!
So why is this here at Jim's blog? Well since his last (and 2nd) stem cell transplant for his multiple myeloma cancer he is doing so well, hooray! So to help fill content here : ) I thought I would merge this blog into "my husband's health and my health" or something along those lines. It was so funny when we were getting the MRI results Jim said "we'll be the multiple multiples!", him with multiple myeloma and me with multiple sclerosis - isn't that something. So here you are at the multiple multiples blog. Anyway, I'm okay, my mom is okay (and oh so very sweet and uplifting) and the hubby is okay. I'll be coming to update what is going on here at the blog. Hopefully it's some good stuff. And I know that there is going to be some because life is oh so full of good stuff. Gina
posted by Gina | 10:26 PM
33 Comments:
you go girl! keep on having something to do will get you through. i managed to return from the vegetable stage because i would not suffer the indignities of the bed pan and just slid off the bed and snaked to the toilet and pulled my self up like a limp pancake. that was in 1980 and i walk and talk and somehow with a quarter of my brain surgically removed managed to get into the extropy list, imagine that! aside from the big drugs at the very intersection you are now in, i turned to Tibetan medicine.
you might know that the shelf life of the brain chemistry of emotional shock is about three years. so do not expect yourself to not be shocked any time soon. not in three weeks or three months but three years at the very least. in my case i did not get over the shock for 7 years... but you do not have to be in shock s long!
i want to thank you for sharing your events with us here on the list. my life turned around and i now am preparing to enter grad school to prepare as a chaplain. quite different from the wild and crazy artist though i still can paint anything! grin. at the TED i saw how dr. jill bolte taylor shared her intersection and it opened me to sharing ...
since my years of recovery i have a deep understanding which i see and feel shinning through your sentences, that you are not your body. that the body has its events but the essence of you and your creative edge is not centered in your body but in your heart or spirit. the fiery indigo that stretches out past infinity and needs all your creative work to flow and success. with love, respect and whatever support you reach out to me for .. only human! with warm regards, ilsa
Hi Gina and Jim,
Having just read about the health issues you are facing I would like to offer some information for you to consider.
If I found myself in either of your situations the first thing I would do is get myself one or a few of the books available on anti-inflammation diets.
The other thing would be to see if you can get an appointment with Dr Mark Hyman. Google his name.
Gina, best wishes to you. I know fear because of thyroid issues. It took over a year to figure out what was going on and all that time I kinda thought it must be a brain tumor... what else would be painfully pushing one eye out of my head? I found that "Right this minute I'm doing ok" was a helpful thought for me to hold, kept me from going bananas when I didn't know.
Best regards, MB from extropy list
I am so sorry to hear this. I'm speechless, to be honest. My grandma's twin sister had MS, so it's really strange for me to think of young people having it. I don't really know what to say, but I want to wish you lots of good luck and all the best! And some hugs: *hugs*!
Take care Gina. I am here for you.
Take care Gina. I am here for you if you need anything.
Gina,my prayers are with you.Being an RN with 25+yrs.of experience,I know what a person goes through within the medical community trying to get answers,and being shuffled from specialist to specialist.Perseverence is the key.Please keep us all posted.
Hi Gina - I am so sorry to hear all of this. The only bright spot is that they were able to diagnose you correctly, so that means the treatment applied will be effective.
My thoughts are with you and your husband!
God bless, Gina! You have been an inspiration to me over the years. Whenever I feel overwhelmed by my explorations of the nanoworld, I take cover under your creative umbrella. Is there any possiblity that this emerging science can help you and your husband? No doubt you will hear many stories from many who have or know someone who has suffered from the "Multiples." My early years in Medicine taught me the power of each individual. You have amazing assets: intelligence, spirit, humor, and love. I thank you for posting your progress, and wish you every success in the fight ahead. If ever you would consider having fine art oil portraits done of you both, let me know. (That's what I do now.) Bless you both once again.
I have been upset by such a bad new. I am upside down. I am not fluent enough in english to express all my thoughts, and I never wrote to you before, but this time I want to say that you are a gem, precious for all of us. I read you for few years now, and I wish to continue for a lot more. You will succeed and win this tough battle. Right now, think that you are in charge of a army in nanobots that will protect you against sickness and that you will regain all this energy you need to make all your wishes come true (if there is something looking strange in my sentences, it will be by mistake. All should be as kind as it is possible to be)
Check here:
http://tinyurl.com/6qzhn6
Hope this helps,
Eric
I'm so sorry. We've missed you and now I know why. My mother has a long time friend with MS, a woman in a wheelchair from her disability--being a single mother in her own home with 2 children. It takes so much strength, and it is still hard--our family feels for you. I hope you have a lot of support and family in your area.
Shannon
OH MY GOODNESS I am so sorry for all you two are going through!!!!!
As I was reading the beginning of the story in my head flashed MS, and then it came!!!! A coworkers wife was diagnosed a couple of years ago and she lost sight in one eye but it came back!!!! I cannot believe this!!!!! I am sitting her with my jaw dropped!!!
I am in shock................
My prayers go out to you, I wonder where you have been lately!!!!!!! Don't you worry the two of you will overcome these diseases!!!! As long as you have the outlook on life like you do!!!!!!
My sympathies for this new challenge to your family's health. Please let me know what I can do to help.
dear gina,
you are incredible. your knowledge of what is going on in the body is admirable. your attitude is awesome. you are loved and held in high regard.
big hug, sending you love and healing light.
~jessica
Gina,
I'm sorry to say - welcome to the MS club. It is fortunate that you were diagnosed so quickly relatively speaking. I first experienced optic neuritis in 2000 at age 31 during which time I lost vision (complete grayness) for almost two months even with high-dose steroids (although I did it orally with Prednisone.) Then I wasn't diagnosed until 2005.
You may already be feeling the effects of Solumedrol - acid reflux, insomnia, swelling of the face/hands/feet, racing heart, emotional swings. My neurologist and MS nurse recommend using Zantac for the stomach, Ambien for sleep, eating foods high in potassium for water balance, and simply being aware of the emotional swings. For me personally, the steroid taper is actually harder causing great fatigue, brain fog, and general weakness. Be aware that not everybody reacts the same way to the steroids, but I do think that they are universally loved and hated at the same time.
I blog at Brass and Ivory and I maintain the Carnival of MS Bloggers. You are invited to come over and check things out. It looks like you already have a process to find credible information (ie. NIH). Unfortunately, there is so much BAD information out there which makes it hard to decipher.
Again, I'm sorry you have MS but it most definitely is not the end of the world. For me, the first year after diagnosis was the most difficult and the time which my MS was the most active. I wish you all the best.
Lisa
BTW, I think a great new title for your blog would be "Multiple Multiples"
very clever indeed
gina~ I will keep you in my prayers~ have faith!
Hi! Gina, Alll the very best, to you and your husband. Its a very difficult time for both of you. May God bless you both.
Varima
Gina, I'm so sorry to hear this. I hope this treatment works well. Your so fiesty, so I'm sure you'll fight it. Who knows, there may be remission, at least that's what I'm praying for. Hang in there!
Dear Gina, What a sad surprise, and at the same time, what a tremendous character you're showing to all of us. Keep fighting, be proactive, don't lose hope and I'll be hoping with you, that you can beat this. Lots of hugs, Amara
Positively hopeful that you are in the 20% of MS folks with minimal symptoms. I add my good thoughts and wishes for you and your husband -- "the multiple multiples."
Thank you Natasha for always being there for me. Hugs to you.
Eric - thank you for that link, it was indeed very informative, we had not heard of the vit D link. So we really apreciate your connecting us to it.
Oh Gina! Oh Jim! It's so unfair. I will be in touch later. Your courageous response is heartening and heart warming. So much to say that won't fit here.
Bob
Gina,
I just want to tell you to keep up your spirits and not to let anyone tell you that MS is a death sentence or that you will end up a vegetable or anything. My dad was diagnosed with MS 23 years ago, at age 39. Yesterday we went out and celebrated his 62nd birthday. He has worked until about a month ago, as an airframe and powerplant mechanic for a major airline. The only reason he is not working now is because he had a stroke a month ago unrelated to the MS, and is probably going to have to take medical retirement because of it. Until the stroke, he still walked, had few of the problems normally associated with MS, and generally maintained a very high standard of life. Even after the stroke, he is back up and walking with a cane, and determined he will be throwing it away soon. MS is different for each person who suffers it, but my Dad decided early on he just wasn't going to let it stop his life, and though he has to take lots of meds and has occasional seizures (maybe 2-3 a year), he has generally had a normal life for the last 23 years. He has to avoid stress and heat, and has had some equilibrium problems he couldn't overcome, but while I know this can be a terrifying and depressing diagnosis when you are first facing it, I want you to know that you can fight it, and with your forward-facing philosophy and futurist attitude, you can live with this, and maybe with your work, beat it someday. Keep your chin up, and take it day by day.
Gina - You're very welcome. It's a fairly new association and even many MS specialists are just learning about it.
Take care,
Eric
Oh, Gina.
I'm so sorry to hear that you guys have to go through this.
Please take good care of yourselves, girl.
We all love ya, baby!
Thank you Eric, and it is interesting because as an animator I have a tendency to get carried away with sitting in front of my computer - making it difficult to go out in the sunshine (which there also isn't as much of here in Seattle). In fact I found this map that shows the occurrence as a function with latitude
http://www.dawnryan.com/Americana/MSMAP-1.jpg
It's ironic because being very fair skinned and having serious 2nd degree sun burns when I was younger (and a melanoma in the genes) I thought it was in my best interest to avoid the sun, but in hindsight (which is always better in the future of course) I should have been taking a supplement. I'm going to look more into this and, I'm going to start taking lots of D! Thanks again for the heads up.
Thank you Bob for your call tonight. We were so glad to hear from you and we love you all very much.
We're all rooting for you, Gina. Hang in there, someday there will be a cure for both "multiples". Your and Jim's positive attitudes are an inspiration.
Oh Gina! I am so sorry to hear this! I will be thinking of you!!
Great news on Jim!! And good for him...multiple multiple's! Too funny! That positive sense of humor and great attitude will be helpful in the future I'm sure!
:)Brittany
Gina, just read through this and wanted to send you some love and blessings during your treatments. What a path this can be?
Keep loving yourself and those around you. You're an inspiration to me.
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