I'm really at peace with my diagnosis. Maybe it's the Lexapro... Or maybe it's just easier because I remain mostly symptom free...
I saw my neurosurgeon this week. Once again I realize how blessed I am with my medical team. When I read stories about other MS patients with insensitive Drs., I can't reiterate how wonderful it is that I am in such good hands!
Said neurosurgeon saw me at 6:30 in the evening. He and his asst. waited around for me, obviously, I was the last patient! He is pleased with my progress and recovery from the surgery. Says I have good strength, and if didn't know how bad the weakness was before, he wouldn't have known I had a problem. That said, I do still have significant atrophy in those big thigh muscles. He said that when a nerve is damaged and not sending impules to the muscles (even in sedentary patients) it only takes 72 hours before the muscles start to atrophy. And it can take me up to 18 MONTHS to get back to where I was. As such, altho I am through with PT, he is going to send me to an exercise specialist to put a plan together of strengthening exercises for me to do on my own.
We also discussed the MS. He thinks the leg weakness I sometimes have when I walk, is not MS, but still related to my herniated disk. Hmmm. He showed me my MRI films (after some "reluctance" worrying that I was going to "obsess" about my lesions) I told him I might, but only until I could accept them. I just gotta know. So he called them up, and while I have a lesion each in my left temporal lobe, corpus collosum, medulla, c2-3 and t2-3 spines they are all tiny. The biggest lesion is 9 mm, which is like a third of an inch. None are active. He said if I didn't have the other MS symptoms I do (wacky reflexes, stuff in my spinal fluid) he might consider the "lesions" "UBOs" --unidentified bright objects" they sometimes discover in normal MRIs.
I also asked him what I do if I get other serious symptoms (temporary blindness for one) or what I do when I'm travelling--do I just assume its MS? Do I go to any old hospital? Is it ER visit worthy? And his first, flat out comment was "You immediately call me." Nice since I have both his home # and e-mail. Like I said, I can't believe what good hands I am in!!!
Sunday, August 31, 2008
Saturday, August 9, 2008
Summer's Over
At least for me. I had a quiet July off from school. Wish I could say I did something fun and exciting. But as I've already posted, vacation wasn't an option for us again this year. However, it was a healthy, contemplative, restorative time for me.
I really needed to decompress after the wild ride I was on since January. And the good news is I've spent this last week in my office with my NEW boss. And she seems really, really normal and wonderful! Normal is a great compliment, believe me! I told her about my MS diagnosis and told her we would all figure out together what that means for me. I said that there are 3 triggers: heat (and in Houston we have to deal with that!), illness (and I'm usually pretty healthy) and stress. I told her that's where she comes in. She laughed and said (Honest to God) "I don't believe in work place stress." !!!!!
If this new and improved work environment and boss turns out like it seems--what a wonderful reward for me!
I really needed to decompress after the wild ride I was on since January. And the good news is I've spent this last week in my office with my NEW boss. And she seems really, really normal and wonderful! Normal is a great compliment, believe me! I told her about my MS diagnosis and told her we would all figure out together what that means for me. I said that there are 3 triggers: heat (and in Houston we have to deal with that!), illness (and I'm usually pretty healthy) and stress. I told her that's where she comes in. She laughed and said (Honest to God) "I don't believe in work place stress." !!!!!
If this new and improved work environment and boss turns out like it seems--what a wonderful reward for me!
Sunday, July 20, 2008
Homework
It's been a busy month for me while I'm off work. Busy for me, probably not for you if you were in my shoes! I'm continuing my exercising. Walking every day. Doing stretching exercises every day. Hoping to start swimming this week at the Y.
I've embraced the MS Swank diet, which limits your fats and includes taking doses of "good" oils and fats. Mmmmm, nothing like a spoonful of flax or cod liver oil! I'm still crazy vitamin lady. I also read food labels like crazy and don't eat anything with bad additives (there's my weakened blood-brain-barrier. I can't assume chemicals and additives WON'T get into my brain).
I'm enjoying listening to an MS self-affirmation cd (no comments please). Whatever works.... And I've been reading. A lot. About brains, neurology, vitamins, MS. And every now and then a little fiction.
A little knowledge is a dangerous thing; I'm going for A LOT of knowledge!
I've embraced the MS Swank diet, which limits your fats and includes taking doses of "good" oils and fats. Mmmmm, nothing like a spoonful of flax or cod liver oil! I'm still crazy vitamin lady. I also read food labels like crazy and don't eat anything with bad additives (there's my weakened blood-brain-barrier. I can't assume chemicals and additives WON'T get into my brain).
I'm enjoying listening to an MS self-affirmation cd (no comments please). Whatever works.... And I've been reading. A lot. About brains, neurology, vitamins, MS. And every now and then a little fiction.
A little knowledge is a dangerous thing; I'm going for A LOT of knowledge!
Sunday, July 6, 2008
The Blues
I haven't posted in awhile. And no one seems to miss me! (Except you Faith, thanks!)
I haven't felt too creative or interesting. I think I'm just feeling blue. I'm off work for the month of July and was really in denial, or at least very good at compartmentalizing things, until this month. I knew I was going to have to really delve into this diagnosis this month. While I had time to, without having to be "up" at work.
I have been having a tougher time with flu-ish reactions to my Friday interferon injections. Fevers and non-stop headaches and tiredness. And I'm already tired of giving in to being tired! Which is what I have to do with MS. I'm not that kind of person to just give in to a weakness!
Then co-workers were difficult at work. People who have been recently informed of my diagnosis and still are happy being disagreeable (and gleeful and gossipy and petty) about something they think I handled inappropriately. I, of course, disagree with them, but even if I was wrong--they can't be supportive and give me the benefit of the doubt, knowing what a hellashis few months I've had? Apparently not.
And then the husband has been grouchy too. Even though he recently referred to me to friends as "superwoman." Which is a good and bad thing. It's a nice reflection on my ability to handle all this, but it also implies that I CAN handle all this with my superwoman strength and x-ray vision. Like I don't need his support. Which is wrong, wrong, wrong. Yet I also know I can't burden him with all my fears and weaknesses.
It occurs to me that even surrounded by friends and family, I'm really all alone in this! And obviously not doing well with it right now. And there's still all those darn medical bills to pay off and no spare money so of course, no summer vacation for us (and because husband was out of work 6 months last year, there was no vacation then either).
No tropical escape for me! It will remain my running fantasy. You see why I haven't posted. No great philosophical words here, just whining...
And for good measure, my hair is falling out.
I haven't felt too creative or interesting. I think I'm just feeling blue. I'm off work for the month of July and was really in denial, or at least very good at compartmentalizing things, until this month. I knew I was going to have to really delve into this diagnosis this month. While I had time to, without having to be "up" at work.
I have been having a tougher time with flu-ish reactions to my Friday interferon injections. Fevers and non-stop headaches and tiredness. And I'm already tired of giving in to being tired! Which is what I have to do with MS. I'm not that kind of person to just give in to a weakness!
Then co-workers were difficult at work. People who have been recently informed of my diagnosis and still are happy being disagreeable (and gleeful and gossipy and petty) about something they think I handled inappropriately. I, of course, disagree with them, but even if I was wrong--they can't be supportive and give me the benefit of the doubt, knowing what a hellashis few months I've had? Apparently not.
And then the husband has been grouchy too. Even though he recently referred to me to friends as "superwoman." Which is a good and bad thing. It's a nice reflection on my ability to handle all this, but it also implies that I CAN handle all this with my superwoman strength and x-ray vision. Like I don't need his support. Which is wrong, wrong, wrong. Yet I also know I can't burden him with all my fears and weaknesses.
It occurs to me that even surrounded by friends and family, I'm really all alone in this! And obviously not doing well with it right now. And there's still all those darn medical bills to pay off and no spare money so of course, no summer vacation for us (and because husband was out of work 6 months last year, there was no vacation then either).
No tropical escape for me! It will remain my running fantasy. You see why I haven't posted. No great philosophical words here, just whining...
And for good measure, my hair is falling out.
Sunday, June 8, 2008
Happiness Vs. Journalling
I've never been one of those people who can "journal." Years ago in the teen diary stage I'd always feel guilty if I skipped days, then weeks, then months. How could you continue a diary if you missed so much time? Later as an adult, as a writer, I'd read how I should be journalling every day, clearing my mind, doing "morning pages" or just dumping whatever (crap) is in my brain. I could never do that. It sounded so whiney. If I write, if I put something on paper that is "permanent" that someone else might eventually pick up and read, I don't want it to be so self-serving. Okay, so I have issues.
But I just had an idea about keeping a "happiness" journal. Just trying to write every day (okay, so whenever I get around to it--no guilt!). Any way, writing BRIEFLY about something that makes me happy or made me happy that day.
Maybe I'll post those here every now and then too.
But I just had an idea about keeping a "happiness" journal. Just trying to write every day (okay, so whenever I get around to it--no guilt!). Any way, writing BRIEFLY about something that makes me happy or made me happy that day.
Maybe I'll post those here every now and then too.
Monday, June 2, 2008
Laughter
I can't underestimate the importance of laughter! There are just some things that amuse me now and I am embracing them. TV shows: "Who's Line is it Anyway?" "Two and a Half Men," "Big Bang Theory," "Kathy Griffith," "Flipping Out," just crack me up. The kids' sense of humor, and Katlyn's "full body" hugs. Matthew thinks its too "Arkansas" to hug me. Which cracks me up too. My funny little Lhaso Apso, Maggie, loves me and is the goofiest little thing. I say all the time that she alone can get me through the depths of my MS. Listening to anything by Harry Nilsson--a blast to the past--brings a smile to my face and a song on my lips as I walk or workout.
And my Dr. wrote me a "prescription" that says "No housework FOREVER!" Which my son framed and put up in the kitchen. Now I doubt it will inspire anyone in this house to do chores in lieu of me, but it makes me laugh out loud everytime I look at it!
That and antidepressants and I have it made.
And my Dr. wrote me a "prescription" that says "No housework FOREVER!" Which my son framed and put up in the kitchen. Now I doubt it will inspire anyone in this house to do chores in lieu of me, but it makes me laugh out loud everytime I look at it!
That and antidepressants and I have it made.
Outtting Myself
The joke in my house was that I had MS before I was diagnosed. It stood for (Boss's first name starting with an M) Syndrome. I couldn't deal with my second, and real MS until I got rid of the first MS. And today was my first day with her GONE!
So I outed myself to the remaining department members. I must say I was underwhelmed with their concern. Both knew other people with MS and pooh poohed my diagnosis with a kind of "Oh you'll be fine" kind of attitude. Which is another reason I waited before I outted myself to everyone. I needed to grieve and really wallow in the seriousness of the diagnosis before I could hope for the best.
People mean well, but boy can they come across as insensitive!
So I outed myself to the remaining department members. I must say I was underwhelmed with their concern. Both knew other people with MS and pooh poohed my diagnosis with a kind of "Oh you'll be fine" kind of attitude. Which is another reason I waited before I outted myself to everyone. I needed to grieve and really wallow in the seriousness of the diagnosis before I could hope for the best.
People mean well, but boy can they come across as insensitive!
Wednesday, May 21, 2008
What Really Bothers Me About THE Diagnosis
Aside from the unknowns of this disease, and the fact that I HAVE AN INCURABLE DISEASE, what really bothers me about this diagnosis:
My brain is affected. I have sclera or lesions IN MY BRAIN. I haven't seen the films yet, but Dr. B told me he'd show them to me anytime. I just couldn't deal with seeing bad news before my surgery. I couldn't go under anesthesia worrying about more than my back. Now I'm ready. But it is unnerving to know, to really know you have something wrong in your brain. It struck me this morning when I was hearing about Senator Kennedy.
Your essence, your soul, everything that makes you "you" is in your brain. You can have a limb amputated and still be "you." But to have something wrong with you brain can change who you are and how you think, and how you function. There's the chance I might not be me anymore....
My brain is affected. I have sclera or lesions IN MY BRAIN. I haven't seen the films yet, but Dr. B told me he'd show them to me anytime. I just couldn't deal with seeing bad news before my surgery. I couldn't go under anesthesia worrying about more than my back. Now I'm ready. But it is unnerving to know, to really know you have something wrong in your brain. It struck me this morning when I was hearing about Senator Kennedy.
Your essence, your soul, everything that makes you "you" is in your brain. You can have a limb amputated and still be "you." But to have something wrong with you brain can change who you are and how you think, and how you function. There's the chance I might not be me anymore....
Monday, May 19, 2008
Of All the Gin Joints In All the World....
He walked into mine.
Call it coincidence, call it synchronicity, call it Divine Intervention...I'm still agog (and thankful!) that Dr. B. WALKED INTO MY OFFICE. A head doctor at Methodist, a Neurosurgeon, a teacher, a researcher, an incredible diagnostician...someone who overheard me talking about my herniated disk--and chose to ask questions and volunteer a second opinion. I don't even want to think about where I'd be medically if he hadn't literally appeared on my doorstep. We both agreed that he was MEANT to walk into my office. He was the 4th doctor I saw and the first and only one who saw the signs of MS.
He and his office staff have babied me, nursed me, held my hand and led the way through my medical maze and they cared about me. The Orthopedist I saw hasn't yet called me to see why I haven't come back.
Call it coincidence, call it synchronicity, call it Divine Intervention...I'm still agog (and thankful!) that Dr. B. WALKED INTO MY OFFICE. A head doctor at Methodist, a Neurosurgeon, a teacher, a researcher, an incredible diagnostician...someone who overheard me talking about my herniated disk--and chose to ask questions and volunteer a second opinion. I don't even want to think about where I'd be medically if he hadn't literally appeared on my doorstep. We both agreed that he was MEANT to walk into my office. He was the 4th doctor I saw and the first and only one who saw the signs of MS.
He and his office staff have babied me, nursed me, held my hand and led the way through my medical maze and they cared about me. The Orthopedist I saw hasn't yet called me to see why I haven't come back.
Sunday, May 18, 2008
Three Months In
I'm 3 months into my MS diagnosis, and today, exactly 8 weeks post-0p.
AND I FEEL GREAT!
I will never again under-appreciate feeling "normal." But right now I feel better than that! It's amazing what having all those medications OUT of your system can do. I'm only on a couple now, my pre-diagnosis, kinda- menopause-related anti-anxiety med. Lexapro. Prescription Ibuprofin (800 mg) which is helping avoid aches and pains from my physical therapy, and my weekly shot of Avonex.
That, and beautiful, freakishly gorgeous, cool Houston weather has made all right with my world! I slept with the bedroom windows open last night and awoke with the cool breeze and the chirping of birds. Lovely.
And note to Rick: I'm happy! Although I'd still like to figure out how to get to a tropical isle! I fear I have many medical bills to pay first!
AND I FEEL GREAT!
I will never again under-appreciate feeling "normal." But right now I feel better than that! It's amazing what having all those medications OUT of your system can do. I'm only on a couple now, my pre-diagnosis, kinda- menopause-related anti-anxiety med. Lexapro. Prescription Ibuprofin (800 mg) which is helping avoid aches and pains from my physical therapy, and my weekly shot of Avonex.
That, and beautiful, freakishly gorgeous, cool Houston weather has made all right with my world! I slept with the bedroom windows open last night and awoke with the cool breeze and the chirping of birds. Lovely.
And note to Rick: I'm happy! Although I'd still like to figure out how to get to a tropical isle! I fear I have many medical bills to pay first!
Friday, May 16, 2008
So What Now?
Now I'm continuing my physical therapy (for both the back and the MS). I apparently am a star student. I'm "advanced" for a back patient. I've been working on stretching exercises. I do them every day and walk at least a mile every day (two on the weekends). Next up is strength exercise, weights and machines.
With regard to the MS: I take my Avonex shot every Friday night. And follow that with a sleeping pill (to sleep through any side affects). I used to have Mexican food and margaritas every friday!
I'm trying to follow a low-fat/no-fat diet. Some days are better than others! There's a Swank Diet that some think helps with MS. It can't hurt. I'm also taking a bunch of vitamins each day--a woman's vitamin, extra calcium, omega oils, primrose oil and "eye vitamins" because macular degeneration runs in the women in my family.
I also either drink cranberry juice or take cranberry pills each day to help with bladder infections which are also common in MS.
With regard to the MS: I take my Avonex shot every Friday night. And follow that with a sleeping pill (to sleep through any side affects). I used to have Mexican food and margaritas every friday!
I'm trying to follow a low-fat/no-fat diet. Some days are better than others! There's a Swank Diet that some think helps with MS. It can't hurt. I'm also taking a bunch of vitamins each day--a woman's vitamin, extra calcium, omega oils, primrose oil and "eye vitamins" because macular degeneration runs in the women in my family.
I also either drink cranberry juice or take cranberry pills each day to help with bladder infections which are also common in MS.
Wednesday, May 14, 2008
Bits & Pieces
A couple of things I remember:
I waited an hour (or less--time is relative when you are waiting for surgery!) lying on a gurney outside the OR. People came by to verify who I was, introduce themselves. and to do various procedures (like starting I.V.s). At some point I decided I needed to use the restroom and I was parked right in front of it. So a nurse put booties on my feet, helped me up and as I clutched the back of that hospital gown, she carried my IVs. She hung them on that handy hook in the bathroom stall (and ladies you thought that was for purses!)
When I came back to my gurney I noticed all the activity had begun in my OR. The door would open every now and then and I could see them draping the table, and bringing instruments in. I didn't want to think about it, but I also was curious. All of a sudden I was wheeled into the OR. I remember taking a deep breath (of that rarified air!) and being in the bright lights. I thought, okay, I'm going to turn my head and look at the table and check things out. And the next thing I knew I was being awakened in Recovery. When I later complained to Dr. B., he laughed and said, "Yeah, we slipped you a margarita!" But it is so weird to have such an incomplete memory.
I waited an hour (or less--time is relative when you are waiting for surgery!) lying on a gurney outside the OR. People came by to verify who I was, introduce themselves. and to do various procedures (like starting I.V.s). At some point I decided I needed to use the restroom and I was parked right in front of it. So a nurse put booties on my feet, helped me up and as I clutched the back of that hospital gown, she carried my IVs. She hung them on that handy hook in the bathroom stall (and ladies you thought that was for purses!)
When I came back to my gurney I noticed all the activity had begun in my OR. The door would open every now and then and I could see them draping the table, and bringing instruments in. I didn't want to think about it, but I also was curious. All of a sudden I was wheeled into the OR. I remember taking a deep breath (of that rarified air!) and being in the bright lights. I thought, okay, I'm going to turn my head and look at the table and check things out. And the next thing I knew I was being awakened in Recovery. When I later complained to Dr. B., he laughed and said, "Yeah, we slipped you a margarita!" But it is so weird to have such an incomplete memory.
Saturday, May 3, 2008
Open Wide
My blog really began with talk of my surgery--not the MS I promised. And now we are about full circle, completing the surgical story.
But before I had surgery, I had to go to the dentist. Since I was going to have 6-8 hour surgery I was having serious anesthesia and would be intubated. And I realized I had a loose crown. Necessitating a dental visit. But a. My dentist retired and b. I didn't have a new dentist and c. It had been awhile since I'd seen one. I was soooooo stressed out. Ernest called his dentist and explained the circumstances and they agreed to see me.
I made Ernest come in the examining room with me. The dentist was very nice, especially as I sat in the chair and cried. Did I mention I was still on major steroids? Which contributed to the dental situation as they wouldn't be able to do any real procedures unless I was put on major antibiotics (prednisone causes damage to you immune system). I told the dentist I just needed to be duct-taped together for surgery. Glue my crown back on. And don't tell me if I have any other dental problems because I can't handle ANOTHER diagnosis! And I told him he couldn't give any "knowing" looks to his dental asst. Because I had already been there with my neurosurgeon! I know those knowing looks mean something serious!
Dr. V. was soooo understanding and didn't laugh his head off at me. He examined me and told me the things I DIDN'T HAVE (no cancer, no cavities, no gum disease) And then he told me he wouldn't even write on my chart until he was out of my eyesite. I love how he and his asst. played along with my insanity. There were lots of sympathetic smiles and pats on my shoulder. I got the darn crown glued on and promised a return visit when I was sane.
But before I had surgery, I had to go to the dentist. Since I was going to have 6-8 hour surgery I was having serious anesthesia and would be intubated. And I realized I had a loose crown. Necessitating a dental visit. But a. My dentist retired and b. I didn't have a new dentist and c. It had been awhile since I'd seen one. I was soooooo stressed out. Ernest called his dentist and explained the circumstances and they agreed to see me.
I made Ernest come in the examining room with me. The dentist was very nice, especially as I sat in the chair and cried. Did I mention I was still on major steroids? Which contributed to the dental situation as they wouldn't be able to do any real procedures unless I was put on major antibiotics (prednisone causes damage to you immune system). I told the dentist I just needed to be duct-taped together for surgery. Glue my crown back on. And don't tell me if I have any other dental problems because I can't handle ANOTHER diagnosis! And I told him he couldn't give any "knowing" looks to his dental asst. Because I had already been there with my neurosurgeon! I know those knowing looks mean something serious!
Dr. V. was soooo understanding and didn't laugh his head off at me. He examined me and told me the things I DIDN'T HAVE (no cancer, no cavities, no gum disease) And then he told me he wouldn't even write on my chart until he was out of my eyesite. I love how he and his asst. played along with my insanity. There were lots of sympathetic smiles and pats on my shoulder. I got the darn crown glued on and promised a return visit when I was sane.
Wednesday, April 30, 2008
There's Hope
A couple of weeks after I began my injections of Avonex for the MS, I re-visited Dr. S. for a follow-up. She was absolutely thrilled that I wasn't reacting much to the injections. Some people get serious flu symptoms. Which is why most of us take it on a Friday evening--if we react badly we won't miss work.
AND the best news of all was Dr. S. said the results of all my MS related tests were so normal or borderline that if I don't develolp any of the myriad symptoms related to MS we will "re-evaluate" my diagnosis and treatment next year.
So I have been advised to have a healthy, happy, stress-free, cool year! (stress, illness and heat can all contribute to an episode).
AND the best news of all was Dr. S. said the results of all my MS related tests were so normal or borderline that if I don't develolp any of the myriad symptoms related to MS we will "re-evaluate" my diagnosis and treatment next year.
So I have been advised to have a healthy, happy, stress-free, cool year! (stress, illness and heat can all contribute to an episode).
Monday, April 28, 2008
Roid Rage II or The World Doesn't Revolve Around Me
So I got those blessed sleeping pills. And slept. It was delightful.
Then one day something happened at work that upset me. By the end of the day I was obsessing about it. I was now on prednisone 4 times a day and man was it affecting me! By the time I got home, I was pacing, and complaining and then crying. Ernest couldn 't console me. Then between the crying I started hyper-ventilating. I really scared Ernest. And me. Ernest tried calling the Dr. (now that he had mastered calling the Dr. after hours--see "Roid Rage #1.") Dr. B. eventually called me and I wouldn't talk to him. I was having a "Dr. Free Day." If I couldn't control anything else--like my health--I could at least control who I talked to.
But Dr. B. was concerned and wouldn't give up and I eventually e-mailed him because I didn't think I could talk to him without crying. And because now at work I was at my busiest point of the whole year. And couldn't afford to lose it at work. He left me several messages on voice mail and e-mail and was clearly not giving up. So the next day I did talk to him when he called from NYC. I apologized for being a difficult patient and he talked and asked some questions making sure I wasn't really losing it. (Brain Dr.s don't like their patients going crazy). I admitted I was embarrassed (and scared) at how I totally lost control of myself. He suggested I be put on an anti-anxiety med. I reminded him I already was on one! He told me to double the dose. Then he prescribed xanax as well. With the suggestion that when I started to feel panicked like I did the day before, I take one or two and "chill." So that was my diagnosis--a panic attack. And then Dr. B. and I talked about our work and our personal lives and how insensitive people can be. And he told me that my "problem" was that I was too intelligent. That I can see all sides of a situation (and thus all sides of my several diagnoses). And then I worry.
Now for one thing, I do like when your brain Dr. tells you you are intelligent. That's like an official diagnosis isn't it? I mean the man specializes in brains, he should know!
And then the rest of the story about what upset me is that it occurred to me (after the panic attack) that the world doesn't revolve around me! Big surprise. But really for the immediate few weeks before (and actually going back to November when I injured myself) I had been totally involved in my own health problems. This particular day reminded me that the world still is going on around me, and any new problems or difficulties in life, I am going to have to factor in and assimilate into life, which includes my health problems. That however good or bad I feel, MS is gonna be with me and all the other crap in life still is there too!
Then one day something happened at work that upset me. By the end of the day I was obsessing about it. I was now on prednisone 4 times a day and man was it affecting me! By the time I got home, I was pacing, and complaining and then crying. Ernest couldn 't console me. Then between the crying I started hyper-ventilating. I really scared Ernest. And me. Ernest tried calling the Dr. (now that he had mastered calling the Dr. after hours--see "Roid Rage #1.") Dr. B. eventually called me and I wouldn't talk to him. I was having a "Dr. Free Day." If I couldn't control anything else--like my health--I could at least control who I talked to.
But Dr. B. was concerned and wouldn't give up and I eventually e-mailed him because I didn't think I could talk to him without crying. And because now at work I was at my busiest point of the whole year. And couldn't afford to lose it at work. He left me several messages on voice mail and e-mail and was clearly not giving up. So the next day I did talk to him when he called from NYC. I apologized for being a difficult patient and he talked and asked some questions making sure I wasn't really losing it. (Brain Dr.s don't like their patients going crazy). I admitted I was embarrassed (and scared) at how I totally lost control of myself. He suggested I be put on an anti-anxiety med. I reminded him I already was on one! He told me to double the dose. Then he prescribed xanax as well. With the suggestion that when I started to feel panicked like I did the day before, I take one or two and "chill." So that was my diagnosis--a panic attack. And then Dr. B. and I talked about our work and our personal lives and how insensitive people can be. And he told me that my "problem" was that I was too intelligent. That I can see all sides of a situation (and thus all sides of my several diagnoses). And then I worry.
Now for one thing, I do like when your brain Dr. tells you you are intelligent. That's like an official diagnosis isn't it? I mean the man specializes in brains, he should know!
And then the rest of the story about what upset me is that it occurred to me (after the panic attack) that the world doesn't revolve around me! Big surprise. But really for the immediate few weeks before (and actually going back to November when I injured myself) I had been totally involved in my own health problems. This particular day reminded me that the world still is going on around me, and any new problems or difficulties in life, I am going to have to factor in and assimilate into life, which includes my health problems. That however good or bad I feel, MS is gonna be with me and all the other crap in life still is there too!
Saturday, April 26, 2008
Roid Rage I
I started intravenous (IV) steroids Monday, February 11. After all my other tests, blood, MRI and spinal fluid showed I had MS, my new neurologist Dr. S., in consultation with my neurosurgeon Dr. B. decided I needed this steroid treatment before I could have surgery. (This is apparently the treatment they give MS patients when they are having an "episode" so I fear these @#$%^&* steroids could be in my future). They considered that I had considerable inflammation in my spine and this would have to be calmed down or resolved before I could have surgery. Otherwise the surgery might not heal correctly. (And again, I thank God for Dr. B coming in my life. My previous Orthopedist would have just done the surgery, not knowing I had MS. No telling what could have happened to me...)
Monday, Tuesday and Wednesday, Feb. 11, 12 and 13 I arrived on the 11th floor of one of Methodist Hospital's buildings at 8:00 a.m . It was a patient floor. They checked me into a semi-private room. I stayed in my clothes, the first day they put a temporry shunt in my arm and began the IV therapy (which lasted 2-3 hours). They fed me breakfast before and lunch afterwards and then I went back to work (with my arm and shunt wrapped in an ace bandage and my hospital bracelet on my wrist). The light really bothered my eyes from the steroids and I practically had to fight with some of the people in my department about keeping the office blinds closed. I believe one "supportive" fellow empoyee said, "Well it's not fair to everyone else that we have to close the blinds just because of one person." Thank you for your support. Of course at this point no one in the office knew I had MS, I just said I had some "undetermined" inflammation that had to be treated before surgery. The lies begin.
I was fortunate that this particular week of IVs was a rare slow one for me at work. Everyone was going to committee meetings to talk about applicants and make decisions. My really busy work began the following week when I would have to start coding, exporting, printing over 1000 personalized letters & envelopes as well as 160 accept letters, contracts, forms. And by that Monday when the work began I was a bonafide crazy person!
Because, once the IVs ended I had to go on oral steroids to wean my body from their effects. That first week I had to take 5 prednisone pills a day, the next week 4, etc. until the last week of 1/2 pill a day. But from the time the IVs ended I couldn't sleep. I would wake up at 3:00 EVERY MORNING. And not be able to sleep any further.
By the following Monday I was pretty darn crazy and exhausted--it had been at least six days since I had had any decent sleep. Dr. B. e-mailed me and I told him how I was and he said he'd phone in sleeping pills. That I would be better once I had slept. Well the pill order never got to the pharmacy. I hid out in my bedroom knowing I was losing my mind. I asked Ernest to call the Dr.'s office after hours. Of course I have spent 20 years with the kids calling the pediatrician after hours, talking to the answering service, getting help for sick kids, drugs phoned into the pharmacy. Ernest was clueless how to do this, and I had to explain it to him and even find the Dr.'s number and the pharmacy's number to call and ultimately he didn't get it done--and so I got no sleeping pills that night either. I threw a stinking fit! The one thing during my whole medical misadventure that I have ASKED him to do and he couldn't manage to get it done!!
I wanted to run out of the house screaming. And said so. Instead I ran out of the house in my pj's, grabbing my raincoat on the way out. Fuzzy slippers on too. I knew enough not to get behind the wheel, so instead I walked around several blocks. At 10:00 p.m. In the dark. With no cell phone. With no purse. With my left leg limping. Crying.
I eventually walked back home, seeing Ernest in the distance, driving off in his car looking for me. I went back in the house while he was still gone. Feeling smug that I had at least worried him! When he came back in the house, he quietly asked the kids, "Has Mom come home?" Of course, they said "yes;" they weren't aware of their parent's drama. By then I was back to hiding out in the bedroom again. And we have never talked about this! He doesn't know I know he drove around looking for me. And he doesn't know where I went.
Monday, Tuesday and Wednesday, Feb. 11, 12 and 13 I arrived on the 11th floor of one of Methodist Hospital's buildings at 8:00 a.m . It was a patient floor. They checked me into a semi-private room. I stayed in my clothes, the first day they put a temporry shunt in my arm and began the IV therapy (which lasted 2-3 hours). They fed me breakfast before and lunch afterwards and then I went back to work (with my arm and shunt wrapped in an ace bandage and my hospital bracelet on my wrist). The light really bothered my eyes from the steroids and I practically had to fight with some of the people in my department about keeping the office blinds closed. I believe one "supportive" fellow empoyee said, "Well it's not fair to everyone else that we have to close the blinds just because of one person." Thank you for your support. Of course at this point no one in the office knew I had MS, I just said I had some "undetermined" inflammation that had to be treated before surgery. The lies begin.
I was fortunate that this particular week of IVs was a rare slow one for me at work. Everyone was going to committee meetings to talk about applicants and make decisions. My really busy work began the following week when I would have to start coding, exporting, printing over 1000 personalized letters & envelopes as well as 160 accept letters, contracts, forms. And by that Monday when the work began I was a bonafide crazy person!
Because, once the IVs ended I had to go on oral steroids to wean my body from their effects. That first week I had to take 5 prednisone pills a day, the next week 4, etc. until the last week of 1/2 pill a day. But from the time the IVs ended I couldn't sleep. I would wake up at 3:00 EVERY MORNING. And not be able to sleep any further.
By the following Monday I was pretty darn crazy and exhausted--it had been at least six days since I had had any decent sleep. Dr. B. e-mailed me and I told him how I was and he said he'd phone in sleeping pills. That I would be better once I had slept. Well the pill order never got to the pharmacy. I hid out in my bedroom knowing I was losing my mind. I asked Ernest to call the Dr.'s office after hours. Of course I have spent 20 years with the kids calling the pediatrician after hours, talking to the answering service, getting help for sick kids, drugs phoned into the pharmacy. Ernest was clueless how to do this, and I had to explain it to him and even find the Dr.'s number and the pharmacy's number to call and ultimately he didn't get it done--and so I got no sleeping pills that night either. I threw a stinking fit! The one thing during my whole medical misadventure that I have ASKED him to do and he couldn't manage to get it done!!
I wanted to run out of the house screaming. And said so. Instead I ran out of the house in my pj's, grabbing my raincoat on the way out. Fuzzy slippers on too. I knew enough not to get behind the wheel, so instead I walked around several blocks. At 10:00 p.m. In the dark. With no cell phone. With no purse. With my left leg limping. Crying.
I eventually walked back home, seeing Ernest in the distance, driving off in his car looking for me. I went back in the house while he was still gone. Feeling smug that I had at least worried him! When he came back in the house, he quietly asked the kids, "Has Mom come home?" Of course, they said "yes;" they weren't aware of their parent's drama. By then I was back to hiding out in the bedroom again. And we have never talked about this! He doesn't know I know he drove around looking for me. And he doesn't know where I went.
Tuesday, April 22, 2008
The Runaway Train
In case you are not keeping up:
Remember all my fun began the day after Thanksgiving, 2007 when I apparently herniated my disk. I saw Drs. and the Orthopedist in December, had the first nerve root injection then. Had the second in January.
Wednesday, Jan. 30, 2008 I met Dr. B. for the first time at school
Friday, Feb. 1, 2008 Exam with Dr. B. at Methodist
Friday, Feb. 1, 2008 3 MRIs
Monday, Feb. 4, 2008 blood tests & spinal tap
Tuesday, Feb. 5, 2008 (Mardi Gras!) I get diagnosed with MS and meet neurologist Dr. S.
Friday, Feb. 8, 2008 more blood tests & liver panel
Saturday, Feb. 9, 2008 4 MRIs (with contrast)
Monday, Feb. 11, 2008 IV steroids & bladder ultrasound
Tuesday, Feb. 12, 2008 IV steroids
Wednesday, Feb. 13, 2008 IV steroids
Thursday, Feb. 14, 2008 Evoked Potentials tests
Friday, Feb. 15, 2008 Dr. S's office to give myself first shot
This is what I referred to initially as "the runaway train." As it turns out none of the above even had anything to do with my initial diagnosis of a herniated disk! You will hear MS patients talk about how long they went without being diagnosed. NOT ME! Runaway train indeed.
Remember all my fun began the day after Thanksgiving, 2007 when I apparently herniated my disk. I saw Drs. and the Orthopedist in December, had the first nerve root injection then. Had the second in January.
Wednesday, Jan. 30, 2008 I met Dr. B. for the first time at school
Friday, Feb. 1, 2008 Exam with Dr. B. at Methodist
Friday, Feb. 1, 2008 3 MRIs
Monday, Feb. 4, 2008 blood tests & spinal tap
Tuesday, Feb. 5, 2008 (Mardi Gras!) I get diagnosed with MS and meet neurologist Dr. S.
Friday, Feb. 8, 2008 more blood tests & liver panel
Saturday, Feb. 9, 2008 4 MRIs (with contrast)
Monday, Feb. 11, 2008 IV steroids & bladder ultrasound
Tuesday, Feb. 12, 2008 IV steroids
Wednesday, Feb. 13, 2008 IV steroids
Thursday, Feb. 14, 2008 Evoked Potentials tests
Friday, Feb. 15, 2008 Dr. S's office to give myself first shot
This is what I referred to initially as "the runaway train." As it turns out none of the above even had anything to do with my initial diagnosis of a herniated disk! You will hear MS patients talk about how long they went without being diagnosed. NOT ME! Runaway train indeed.
In between
In between my IV steroid therapy and my first Friday Avonex shot, I forgot to mention that I also had an additional procedure: Evoked Potentials. Sounds like something students at SJS would take, doesn't it? Or an Admissions test?!
First of all I had to traipse THROUGH the 4th floor neurosurgical patient floor (more than a little eery--knowing I'd be in one of those rooms soon) to get to the department that handles this. I had what seemed to be electrodes glued onto parts of my scalp as well as my arms and my legs. For one test I had to stare, one eye at a time, at a computer screen. For the rest of the tests they shocked one of my limbs, to watch (and measure) the reaction. It is very weird to watch your hand or foot flop around when you are not moving it! Very "Young Frankenstein."
First of all I had to traipse THROUGH the 4th floor neurosurgical patient floor (more than a little eery--knowing I'd be in one of those rooms soon) to get to the department that handles this. I had what seemed to be electrodes glued onto parts of my scalp as well as my arms and my legs. For one test I had to stare, one eye at a time, at a computer screen. For the rest of the tests they shocked one of my limbs, to watch (and measure) the reaction. It is very weird to watch your hand or foot flop around when you are not moving it! Very "Young Frankenstein."
Sunday, April 20, 2008
Roger Clemens and Me
The Monday morning after the 4 MRIs mentioned below, I headed off to Methodist Hospital to begin IV steroid treatment. Roger Clemens has nothing on me! And hey, my steroids were legal! Ernest, as usual, accompanied me and brought his laptop to do a little work while he waited with me.
I got checked in and sent to a room. I got to keep my clothes on, and got "comfy" on a hospital bed. They brought me breakfast which I picked t before giving it to Ernest. Then they got me ready for my steroid IV. But here's the catch, they're not going to just stick an IV in me each day. Nope, they put a temporary shunt in my arm. That I get to keep and walk around with for those three days. Yuck-o. After the IV was done, several hours later, I got my arm bandaged, had a hospital lunch which Ernest mostly ate, and then I went back to work (lather, rinse and repeat this scenario for three days).
They told me I would feel like Super Woman while on these steroids. In reality I felt more like Super PMS Woman. My main side effect was being really, really bothered by bright lights (daylight, office lights, you name it). I also lost my appetite (although the Dr. said she'd never heard of that, usually people get hungry). Who knows, it could have been the emotional toll of all this that decreased my appetite. Any way during the lengthy course of steroids (3 days of IV steroids followed by 6 weeks of tapering does of oral steroids) I lost 10 lbs.
On the third and last day of IVs Dr. B came by and we talked more about my MRIs and my back problem and MS. Then he decided to show us part of the presentation he gives to his med students--on the nervous system and myelin sheath. He put a flash drive in Ernest's laptop (doesn't that sound a little obscene! LOL!) and gave us a presentation. Most of it wasn't over our heads! A little later his office assistant G. (who has been incredibly helpful and plays along with my fantasy of escaping to an island in the Pacific) came by to visit. Which was really sweet. And later my new Neurologist Dr. S. came by as well. I was almost beginning to feel like a celebrity!
I had also requested to be shown how to inject since I would begin my Avonex injections that week. So a nurse came in and explained how the needles work. BUT I WANTED TO ACTUALLY STICK A NEEDLE IN MYSELF. Apperantly they thought that was nuts--or I was!. But really, how else was I going to learn to do it unless I really did it?
So instead Dr. S. said I could come by her office on Friday and one of her nurses would help me. That was the plan.
By Friday I was so ready to inject myself. The nurse seemed puzzled by my eagerness and kept asking thing like, "have you injected yourself before?" "have you injected someone else?" "are you in healthcare?" No, no and no, just give me the darn needle! She showed me how to keep everything clean and sterile--and I jabbed myself in the thigh. I really was embarrassed at how easy it was. And no, it didn't hurt either.
I got checked in and sent to a room. I got to keep my clothes on, and got "comfy" on a hospital bed. They brought me breakfast which I picked t before giving it to Ernest. Then they got me ready for my steroid IV. But here's the catch, they're not going to just stick an IV in me each day. Nope, they put a temporary shunt in my arm. That I get to keep and walk around with for those three days. Yuck-o. After the IV was done, several hours later, I got my arm bandaged, had a hospital lunch which Ernest mostly ate, and then I went back to work (lather, rinse and repeat this scenario for three days).
They told me I would feel like Super Woman while on these steroids. In reality I felt more like Super PMS Woman. My main side effect was being really, really bothered by bright lights (daylight, office lights, you name it). I also lost my appetite (although the Dr. said she'd never heard of that, usually people get hungry). Who knows, it could have been the emotional toll of all this that decreased my appetite. Any way during the lengthy course of steroids (3 days of IV steroids followed by 6 weeks of tapering does of oral steroids) I lost 10 lbs.
On the third and last day of IVs Dr. B came by and we talked more about my MRIs and my back problem and MS. Then he decided to show us part of the presentation he gives to his med students--on the nervous system and myelin sheath. He put a flash drive in Ernest's laptop (doesn't that sound a little obscene! LOL!) and gave us a presentation. Most of it wasn't over our heads! A little later his office assistant G. (who has been incredibly helpful and plays along with my fantasy of escaping to an island in the Pacific) came by to visit. Which was really sweet. And later my new Neurologist Dr. S. came by as well. I was almost beginning to feel like a celebrity!
I had also requested to be shown how to inject since I would begin my Avonex injections that week. So a nurse came in and explained how the needles work. BUT I WANTED TO ACTUALLY STICK A NEEDLE IN MYSELF. Apperantly they thought that was nuts--or I was!. But really, how else was I going to learn to do it unless I really did it?
So instead Dr. S. said I could come by her office on Friday and one of her nurses would help me. That was the plan.
By Friday I was so ready to inject myself. The nurse seemed puzzled by my eagerness and kept asking thing like, "have you injected yourself before?" "have you injected someone else?" "are you in healthcare?" No, no and no, just give me the darn needle! She showed me how to keep everything clean and sterile--and I jabbed myself in the thigh. I really was embarrassed at how easy it was. And no, it didn't hurt either.
Friday, April 18, 2008
T H E Diagnosis or Laissez Les Bon Temps Roulez
Dr. B told me he'd call me on Tuesday to let me know what the spinal fluid showed. So I waited. And waited. And waited. The longer I waited, the more I knew it wouldn't be good news. Dr. B had already scheduled me with a Neurologist for that afternoon after work.
At 4:00, right as I was leaving work, Dr. B. called. He said he wasn't sure if he should tell me, but since he had promised me, and since he didn't want me hearing the news from a Dr. I hadn't met yet, he decided to give me the results of the tests: I have Multiple Sclerosis. I started to cry. Then he felt bad (it's not like a brain surgeon isn't used to giving bad news and having his patients cry). But I think it surprised him a little since in every meeting with me he had mentioned MS and I hadn't gotten upset. It was just easier when I didn' t have the definitive diagnosis. It's a difficult thing to hear that you have an incurable disease.
Laissez Les Bon Temps Roulez. Happy Mardi Gras. Happy Fat Tuesday. February 5, 2008.
But in his thought process, based on his examination of me, he felt I had a "simmering case of MS." That my MS hadn't really developed and there were treatments that Dr. S., my Neurologist would explain to me.
I cried on the way to the Drs. office. My blood pressure was an amazing 147/97. No one in the Drs.' office even commented on that. I guess they are used to patients being stressed at bad news there. I had a huge questionnaire to answer with all sorts of weird questions, very few of which I could even answer. (In retrospect, I guess that's a good thing). Then Dr. S. called Ernest and I into her office. She started talking conversationally, and I told her we could cut to the chase because Dr. B. had already spilled the beans about the MS. So she explained MS. I took notes because I knew I wouldn't remember anything. Now when I look at them, I can't read my writing! I was writing between the tears. Clinically I have MS even though I am asymptommatic. My cervical, thoracic and brain MRIs show "lesions" or "sclera".
Basically I was told that this is a good age to have MS, because there are a number of "DMDs" (Disease Modifying Drugs) that weren't available 10 years ago. So I would be started on one of them, Avonex, a particular type of interferon. By injection. Once a week. Intramuscularly (that means it's a needle 1 1/2" and I inject in my thighs (my lap).
But before we started those meds I had to go in the next friday for a complete set of MRIs, this time with a contrast medium injected in me. These MRIs would show if I had any active lesions, therefore, an "active" case of MS.
That would bring my MRI count up to 8 since November.
, but who's counting? (I AM!) I wasn't happy about having 4 more MRIs done, all at once (a couple of hours!) So I opted to take the several tranquilizers. they offered. And I do think I snoozed a little, while Ernest who accompanied me, waited, bored to death in the waiting room (holding my jewelry). Let me say again, that Ernest has been my Rock throughout all this.
The following Monday I was scheduled for inpatient/outpatient steroid treatments. Steroids seem to be the preferred treatment for a flare up or "episode" of MS. That didn't necessarily apply to me, this time but since my spinal fluid showed inflammation and I couldn't have my herniated disk surgery as long as I had any spinal inflammation it was a necessity. Thus a long course of steroids was in my immediate future.
We left Dr. S.s office with me in tears, worrying about how to tell the kids. I suggested to Ernest that we drive directly to his mother's house in Pearland. I needed a mother's shoulders to cry on. And I did. When we later got home I hid out in the bedroom while Ernest told the kids (more calmly than I would be able to).
At 4:00, right as I was leaving work, Dr. B. called. He said he wasn't sure if he should tell me, but since he had promised me, and since he didn't want me hearing the news from a Dr. I hadn't met yet, he decided to give me the results of the tests: I have Multiple Sclerosis. I started to cry. Then he felt bad (it's not like a brain surgeon isn't used to giving bad news and having his patients cry). But I think it surprised him a little since in every meeting with me he had mentioned MS and I hadn't gotten upset. It was just easier when I didn' t have the definitive diagnosis. It's a difficult thing to hear that you have an incurable disease.
Laissez Les Bon Temps Roulez. Happy Mardi Gras. Happy Fat Tuesday. February 5, 2008.
But in his thought process, based on his examination of me, he felt I had a "simmering case of MS." That my MS hadn't really developed and there were treatments that Dr. S., my Neurologist would explain to me.
I cried on the way to the Drs. office. My blood pressure was an amazing 147/97. No one in the Drs.' office even commented on that. I guess they are used to patients being stressed at bad news there. I had a huge questionnaire to answer with all sorts of weird questions, very few of which I could even answer. (In retrospect, I guess that's a good thing). Then Dr. S. called Ernest and I into her office. She started talking conversationally, and I told her we could cut to the chase because Dr. B. had already spilled the beans about the MS. So she explained MS. I took notes because I knew I wouldn't remember anything. Now when I look at them, I can't read my writing! I was writing between the tears. Clinically I have MS even though I am asymptommatic. My cervical, thoracic and brain MRIs show "lesions" or "sclera".
Basically I was told that this is a good age to have MS, because there are a number of "DMDs" (Disease Modifying Drugs) that weren't available 10 years ago. So I would be started on one of them, Avonex, a particular type of interferon. By injection. Once a week. Intramuscularly (that means it's a needle 1 1/2" and I inject in my thighs (my lap).
But before we started those meds I had to go in the next friday for a complete set of MRIs, this time with a contrast medium injected in me. These MRIs would show if I had any active lesions, therefore, an "active" case of MS.
That would bring my MRI count up to 8 since November.
, but who's counting? (I AM!) I wasn't happy about having 4 more MRIs done, all at once (a couple of hours!) So I opted to take the several tranquilizers. they offered. And I do think I snoozed a little, while Ernest who accompanied me, waited, bored to death in the waiting room (holding my jewelry). Let me say again, that Ernest has been my Rock throughout all this.
The following Monday I was scheduled for inpatient/outpatient steroid treatments. Steroids seem to be the preferred treatment for a flare up or "episode" of MS. That didn't necessarily apply to me, this time but since my spinal fluid showed inflammation and I couldn't have my herniated disk surgery as long as I had any spinal inflammation it was a necessity. Thus a long course of steroids was in my immediate future.
We left Dr. S.s office with me in tears, worrying about how to tell the kids. I suggested to Ernest that we drive directly to his mother's house in Pearland. I needed a mother's shoulders to cry on. And I did. When we later got home I hid out in the bedroom while Ernest told the kids (more calmly than I would be able to).
Tuesday, April 15, 2008
Toes Should Curl
So during that first visit with Dr. B he mentioned the possibility of MS. But he said it so casually that I didn't think it was a real possibility. However, I did have those toes that won't curl.
I was then scheduled for blood tests and 3 MRIs, of my brain, cervical and thoracic spine that Friday evening at Methodist Hospital. I already had an MRI (from the orthopedist) of my lumbar spine. Dr. B called me at home on Saturday evening to tell me all the things I DIDN'T have, based on my blood test (HIV, Lyme Disease, among others), but he said he wanted to schedule me for a spinal tap (or lumbar puncture). That would be Monday afternoon in Methodist Hospital.
That really stressed me out. I came in to work Monday and told my boss about that test and that I would be out that afternoon and possibly the next day for a spinal tap. Whereupon she decided to give me my yearly performance review. LIKE I CARED AT THAT POINT!
As it was it was getting difficult to explain all the tests and Dr. appts. I was having "just" for a herniated disk. I explained I had some sort of inflammation they were checking out and most everyon bought that. I wasn't ready to acknowledge the possibility of MS.
Ernest picked me up at work Monday, saying Dr. B called HIS cell phone and asked me to come in earlier for another blood test. After the blood test I had no idea where we were supposed to go for the spinal tap and neither--the hospital, Scurlock, or Smith towers. Ernest dragged me along, me limping with the bad left leg. I finally stopped and refused to go any further--he needed to ask someone for directions--since he got the phone call. We had a little fight in the elevator lobby wherever we were. And Ernest snapped back at me--I had to remind him I was the stressed out patient! He did stop and talked with the security desk--two other men. You know what they say about men and directions...and here's three of them being useless. I finally called the Drs.' office and told his asst. G. that we were lost and I was going home! She said that wasn't an option--that Dr. B. would get in his car and find me. There was just no escaping all this, as much as I wanted to! So she figured out where we were and brought us up to her office. Dr. B. came strolling by whereupon I informed him I had spent the whole weekend trying to figure out where to escape to. He suggested Hawaii.
Hence my theme of escaping to an island in the Pacific.
But instead we went over to Methodist Hospital and Dr. B did my spinal tap himself. If he wasn't being "amusing" Ernest was. I balked when Ernest made the analogy of sap coming out of a maple tree. I had to remind the two of them that spinal tap patients have no sense of humor, at least this one didn't-- SO CUT IT OUT.
I was then scheduled for blood tests and 3 MRIs, of my brain, cervical and thoracic spine that Friday evening at Methodist Hospital. I already had an MRI (from the orthopedist) of my lumbar spine. Dr. B called me at home on Saturday evening to tell me all the things I DIDN'T have, based on my blood test (HIV, Lyme Disease, among others), but he said he wanted to schedule me for a spinal tap (or lumbar puncture). That would be Monday afternoon in Methodist Hospital.
That really stressed me out. I came in to work Monday and told my boss about that test and that I would be out that afternoon and possibly the next day for a spinal tap. Whereupon she decided to give me my yearly performance review. LIKE I CARED AT THAT POINT!
As it was it was getting difficult to explain all the tests and Dr. appts. I was having "just" for a herniated disk. I explained I had some sort of inflammation they were checking out and most everyon bought that. I wasn't ready to acknowledge the possibility of MS.
Ernest picked me up at work Monday, saying Dr. B called HIS cell phone and asked me to come in earlier for another blood test. After the blood test I had no idea where we were supposed to go for the spinal tap and neither--the hospital, Scurlock, or Smith towers. Ernest dragged me along, me limping with the bad left leg. I finally stopped and refused to go any further--he needed to ask someone for directions--since he got the phone call. We had a little fight in the elevator lobby wherever we were. And Ernest snapped back at me--I had to remind him I was the stressed out patient! He did stop and talked with the security desk--two other men. You know what they say about men and directions...and here's three of them being useless. I finally called the Drs.' office and told his asst. G. that we were lost and I was going home! She said that wasn't an option--that Dr. B. would get in his car and find me. There was just no escaping all this, as much as I wanted to! So she figured out where we were and brought us up to her office. Dr. B. came strolling by whereupon I informed him I had spent the whole weekend trying to figure out where to escape to. He suggested Hawaii.
Hence my theme of escaping to an island in the Pacific.
But instead we went over to Methodist Hospital and Dr. B did my spinal tap himself. If he wasn't being "amusing" Ernest was. I balked when Ernest made the analogy of sap coming out of a maple tree. I had to remind the two of them that spinal tap patients have no sense of humor, at least this one didn't-- SO CUT IT OUT.
Monday, April 14, 2008
The Amazing Dr. B.
We left off (below) with Dr. B arriving in my office at school because his child was going through the application process. He overheard me talking about my herniated disc. Since he had time to kill while waiting for his child, he engaged me in conversation--just some generic comments about herniated discs. I asked him why my Drs'. shirt said "Orthopedist" while his Dr. shirt said "Neurosurgeon." He explained that both do spine surgery, but for the Ortho it's the smallest surgery, but for the Neuro, it's the largest. And before Dr. B left, he handed me his business card in case I wanted a second opinion.
That night I noticed I had lost the movement in my leg and realized I'd probably be looking at surgery. While I mulled that over, I thought about Dr. B and the neurosurgeon aspect. The more I thought about it, the more it made sense to have a neurosurgeon operate on my spine. So I e-mailed him the next day, a Thursday, asking how I would get my records to him. The next thing I knew his office was calling me. Dr. B had wielded his magical powers, found my MRIs and moved his schedule around so I would see him first thing Friday morning. He later told me when he saw the size of the herniation, he felt we shouldn't mess around and he would have scheduled surgery right away (while the Ortho was still talking about a 3rd nerve root injection).
When I arrived on Friday, Dr. B spent a lot of time talking with me and examining me. Understand this was the fourth Dr. I saw (1. The ER Dr., 2. My regular Dr., 3. The Orthopedist). Dr. B did the usual (low tech) neuro exam--using that darn hammer on my various joints. But he also watched me walk, and stand on my toes, and do some hand-eye coordination things and he checked my hearing. Then he tested my feet. Low-tech again, he used the end of the hammer to run up the sole of my foot. My toes flared. He did it again. Toes flared again. Then he looked at his assistant who was in the room. They made significant eye contact. At that point he told me I had a positive Babinski reflex, which in anyone older than 2 means some sort of neurological problem. I was scheduled to come back that night for additional MRIs and blood tests.
That night I noticed I had lost the movement in my leg and realized I'd probably be looking at surgery. While I mulled that over, I thought about Dr. B and the neurosurgeon aspect. The more I thought about it, the more it made sense to have a neurosurgeon operate on my spine. So I e-mailed him the next day, a Thursday, asking how I would get my records to him. The next thing I knew his office was calling me. Dr. B had wielded his magical powers, found my MRIs and moved his schedule around so I would see him first thing Friday morning. He later told me when he saw the size of the herniation, he felt we shouldn't mess around and he would have scheduled surgery right away (while the Ortho was still talking about a 3rd nerve root injection).
When I arrived on Friday, Dr. B spent a lot of time talking with me and examining me. Understand this was the fourth Dr. I saw (1. The ER Dr., 2. My regular Dr., 3. The Orthopedist). Dr. B did the usual (low tech) neuro exam--using that darn hammer on my various joints. But he also watched me walk, and stand on my toes, and do some hand-eye coordination things and he checked my hearing. Then he tested my feet. Low-tech again, he used the end of the hammer to run up the sole of my foot. My toes flared. He did it again. Toes flared again. Then he looked at his assistant who was in the room. They made significant eye contact. At that point he told me I had a positive Babinski reflex, which in anyone older than 2 means some sort of neurological problem. I was scheduled to come back that night for additional MRIs and blood tests.
Sunday, April 13, 2008
Recent History
The previous posting brings us to this latest news/diagnosis:
In November of 2007, the day after Thanksgiving, Friday, I injured myself. I was screwing around with the dog, and then went into the kitchen and opened the dishwasher and suddenly had excruciating pain in my left hip, inner thigh and knee. For quite awhile I assumed it was an incredible escalation in my usual S-I joint pain. I laid on the couch for quite awhile, using a heating pad. But nothing helped. For many hours I dealt with the excruciating, electric shock-like pain. I thought if I could sleep, maybe I would wake up healed. But I couldn't sleep either. Finally around dinner time Ernest decided it was time to go to the Emergency Room. I didn't argue with him.
We went to said (unnamed) ER. Getting to and fro to the car, out of the car, into the ER was agony. I sat in a wheelchair for an hour or more in the ER. Then I eventually saw a Dr. As I reflect back on it, he never really examined me, certainly didn't even touch me. Instead he diagnosed a pulled muscle. Said there was no point in x-raying, because soft tissue injuries don't show up on x-rays. He had someone give me a shot of demoral and an Rx for Vicadin and said I would have to be off work for 4-5 days. That last statement was a no-brainer because even with the Vicadin I continued to be in such pain, I couldn't sleep, much less get out of bed or into clothes! I stayed home until Thursday then hobbled into work. I called my (new) regular physician and made an appt. I saw her and she did a little work up and was really alarmed by my inability to do much with that left leg. I couldn't lift it very high, or do a leg lift. She referred me to an Orthopedist.
The Orthopedist did a neurological work up (which is surprisingly low-tech--it involves hitting your various joints with that little metal hammer! My regular Dr. had done the same thing), he took x-rays and scheduled me for my first MRI. He asked me what I thought the diagnosis was and I said "my S-I joint" and he said, "No, it's a disc, probably L-3." And he gave me Darvocet--which made me a little loopy, but blessedly took away the pain! I went home that evening and filled the Rx (and the pharmacy was busy and didn't have the Rx ready until 8:30 p.m. I was in such pain, when I finally got the Rx, I took two --embracing the warning "may cause drowsiness.") And I slept through the night! That was the first time in a week that I slept soundly. Ernest said I snored all night and he was thrilled! I woke in the morning, realizing I had slept through the night--and I cried! Really and truly. I had been so exhausted and in pain for a week I was beside myself that I had actually slept! Going to work continued to be a challenge--working in the only non-handicapped building on campus. I have to climb a flight of stairs to get into my office. Which began the several month tradition, of Ernest walking me up and down the stairs to my office. Once I was at work, I could never leave the office.
The MRI confirmed the Dr's. diagnosis of a herniated L-3, L-4 disc. And the week before Christmas I was scheduled for a "nerve root injection." It involved being checked in to an outpatient facility, having anesthesia for the 10 minue procedure of injecting steroids into the nerves coming out of the L-3, L-4 disc. Dr. said I had a "very large" herniation and along with that, pain, numbness and weakness. Those are the big three of disc herniation--sometimes you just get one symptom, but I had all three. There was hope that the steroids would relieve any of those three symptoms and might help the herniation resolve or shrink or go away. I was so weirded out by the idea of anesthesia, but it wasn't bad. And he was right. The pain went away. I still had numbness and weakness, but at least I didn't have the pain. Which meant I didn't have to take the Darvoset--and wouldn't have to worry about being fuzzy-brained at work! Especially as we were headed into my busiest time of year.
We wound up scheduling another nerve root injection (I could have 3) in January. Which of course meant starting my insurance deductible all over again. That was a stress, but I was able to work that out. I had the second injection. Inititially there wasn't any change in my leg, until a week later. That particular Wednesday I was at work and noticed I could lift my left leg as fully as my right. I was so excited because that meant I was getting better and might not have to even consider surgery (which was the next option after the nerve root injections). I was busy showing off and discussing my back problem with a fellow employee when I met the incredible Dr. B.
In November of 2007, the day after Thanksgiving, Friday, I injured myself. I was screwing around with the dog, and then went into the kitchen and opened the dishwasher and suddenly had excruciating pain in my left hip, inner thigh and knee. For quite awhile I assumed it was an incredible escalation in my usual S-I joint pain. I laid on the couch for quite awhile, using a heating pad. But nothing helped. For many hours I dealt with the excruciating, electric shock-like pain. I thought if I could sleep, maybe I would wake up healed. But I couldn't sleep either. Finally around dinner time Ernest decided it was time to go to the Emergency Room. I didn't argue with him.
We went to said (unnamed) ER. Getting to and fro to the car, out of the car, into the ER was agony. I sat in a wheelchair for an hour or more in the ER. Then I eventually saw a Dr. As I reflect back on it, he never really examined me, certainly didn't even touch me. Instead he diagnosed a pulled muscle. Said there was no point in x-raying, because soft tissue injuries don't show up on x-rays. He had someone give me a shot of demoral and an Rx for Vicadin and said I would have to be off work for 4-5 days. That last statement was a no-brainer because even with the Vicadin I continued to be in such pain, I couldn't sleep, much less get out of bed or into clothes! I stayed home until Thursday then hobbled into work. I called my (new) regular physician and made an appt. I saw her and she did a little work up and was really alarmed by my inability to do much with that left leg. I couldn't lift it very high, or do a leg lift. She referred me to an Orthopedist.
The Orthopedist did a neurological work up (which is surprisingly low-tech--it involves hitting your various joints with that little metal hammer! My regular Dr. had done the same thing), he took x-rays and scheduled me for my first MRI. He asked me what I thought the diagnosis was and I said "my S-I joint" and he said, "No, it's a disc, probably L-3." And he gave me Darvocet--which made me a little loopy, but blessedly took away the pain! I went home that evening and filled the Rx (and the pharmacy was busy and didn't have the Rx ready until 8:30 p.m. I was in such pain, when I finally got the Rx, I took two --embracing the warning "may cause drowsiness.") And I slept through the night! That was the first time in a week that I slept soundly. Ernest said I snored all night and he was thrilled! I woke in the morning, realizing I had slept through the night--and I cried! Really and truly. I had been so exhausted and in pain for a week I was beside myself that I had actually slept! Going to work continued to be a challenge--working in the only non-handicapped building on campus. I have to climb a flight of stairs to get into my office. Which began the several month tradition, of Ernest walking me up and down the stairs to my office. Once I was at work, I could never leave the office.
The MRI confirmed the Dr's. diagnosis of a herniated L-3, L-4 disc. And the week before Christmas I was scheduled for a "nerve root injection." It involved being checked in to an outpatient facility, having anesthesia for the 10 minue procedure of injecting steroids into the nerves coming out of the L-3, L-4 disc. Dr. said I had a "very large" herniation and along with that, pain, numbness and weakness. Those are the big three of disc herniation--sometimes you just get one symptom, but I had all three. There was hope that the steroids would relieve any of those three symptoms and might help the herniation resolve or shrink or go away. I was so weirded out by the idea of anesthesia, but it wasn't bad. And he was right. The pain went away. I still had numbness and weakness, but at least I didn't have the pain. Which meant I didn't have to take the Darvoset--and wouldn't have to worry about being fuzzy-brained at work! Especially as we were headed into my busiest time of year.
We wound up scheduling another nerve root injection (I could have 3) in January. Which of course meant starting my insurance deductible all over again. That was a stress, but I was able to work that out. I had the second injection. Inititially there wasn't any change in my leg, until a week later. That particular Wednesday I was at work and noticed I could lift my left leg as fully as my right. I was so excited because that meant I was getting better and might not have to even consider surgery (which was the next option after the nerve root injections). I was busy showing off and discussing my back problem with a fellow employee when I met the incredible Dr. B.
Saturday, April 12, 2008
A History Lesson
Now that my back surgery is history, it's time for me to discuss MS--with or without the "adventure" my blog promises!
But before I do, let's discuss my history of diagnoses:
When Katlyn was a toddler (like 13 years ago) I had an accute pain in my butt. And it had nothing to do with bosses, spouses or kids! Seriously, the pain was right inside my butt "cheek" and sometimes hurt down my leg to my toes. I painfully dealt with it for awhile, cuz I wasn't looking forward to having a Dr. look at my butt! But I eventually gave in and went to the Dr. She initially diagnosed "sacro-illitus" which is an inflammation (arthritis like) of the bones/joint where your tailbone meets your hip bone. Apparently this is not usually diagnosed quickly or correctly, except my physician had just been diagnosed with the same thing. But to "rule out" anything else, I had blood tests done and an MRI of my spine. Lo and behold, the blood tests come back showing I have lupus and the MRI comes back showing I have a herniated disk. Many, many other tests followed. The Orthopedist decided the herniated disk wasn't touching my spinal column--so no problem there. The lupus hung over my head for awhile, until I went to a Rheumatologist who decided that the(ANA) blood test was scewed because of the S-I inflammation/arthritis. And I was treated unsuccesfully with physical therapy for the S-I joint and I learned to just live with the discomfort.
Then a little while later I go to my eye doctor for new eyeglasses and he asks me a million questions about my eyes (do they itch? Do they tear? Do they hurt? No, no and no). But apparently my corneas look damaged. (and if they are damaged, the only correction is a cornea transplant from cadaver eyes!) I get referred to a cornea specialist to have my corneas mapped. I go to that eye doctor and it's me and all the blue-haired ladies in walkers! Apparently cornea problems are common in little old ladies--which did nothing to humor me! Ultimately, it was decided my corneas are normal, they just look weird.
All of which THOROUGHLY frustrated me about doctors! I don't mind having an illness, disease, condition, whatever, if I actually have SYMPTOMS, but to get diagnoses when I don't have a problem, is hugely frustrating and put me off seeing doctors on a regular basis.
Which brings me to MS. Once AGAIN I have a diagnosis without me experiencing ANY SYMPTOMS!
But before I do, let's discuss my history of diagnoses:
When Katlyn was a toddler (like 13 years ago) I had an accute pain in my butt. And it had nothing to do with bosses, spouses or kids! Seriously, the pain was right inside my butt "cheek" and sometimes hurt down my leg to my toes. I painfully dealt with it for awhile, cuz I wasn't looking forward to having a Dr. look at my butt! But I eventually gave in and went to the Dr. She initially diagnosed "sacro-illitus" which is an inflammation (arthritis like) of the bones/joint where your tailbone meets your hip bone. Apparently this is not usually diagnosed quickly or correctly, except my physician had just been diagnosed with the same thing. But to "rule out" anything else, I had blood tests done and an MRI of my spine. Lo and behold, the blood tests come back showing I have lupus and the MRI comes back showing I have a herniated disk. Many, many other tests followed. The Orthopedist decided the herniated disk wasn't touching my spinal column--so no problem there. The lupus hung over my head for awhile, until I went to a Rheumatologist who decided that the(ANA) blood test was scewed because of the S-I inflammation/arthritis. And I was treated unsuccesfully with physical therapy for the S-I joint and I learned to just live with the discomfort.
Then a little while later I go to my eye doctor for new eyeglasses and he asks me a million questions about my eyes (do they itch? Do they tear? Do they hurt? No, no and no). But apparently my corneas look damaged. (and if they are damaged, the only correction is a cornea transplant from cadaver eyes!) I get referred to a cornea specialist to have my corneas mapped. I go to that eye doctor and it's me and all the blue-haired ladies in walkers! Apparently cornea problems are common in little old ladies--which did nothing to humor me! Ultimately, it was decided my corneas are normal, they just look weird.
All of which THOROUGHLY frustrated me about doctors! I don't mind having an illness, disease, condition, whatever, if I actually have SYMPTOMS, but to get diagnoses when I don't have a problem, is hugely frustrating and put me off seeing doctors on a regular basis.
Which brings me to MS. Once AGAIN I have a diagnosis without me experiencing ANY SYMPTOMS!
Friday, April 11, 2008
First Rehab Session
So I had my first physical therapy session. Yep, it was mostly an evaluation, but they also discussed the plans. I did and will be doing lots of stretching exercises because I am not limber AT ALL and because I need to loosen those back muscles. I'll also have some soft tissue massage around the incision to prevent adhesions. I have homework stretching to do at home as well.
Even tho I'm supposed to go three times a week, I'm only going 2 because only on Tuesdays and Thursdays is my preferred therapist available at 4:30. See what a good employee I am being--trying not to miss any additional work. Like it will be appreciated....
And after the stretching (and after I have improved) we'll work on strengthining exercises to build up my abdominal muscles, to offset any weak back muscles, and also see if I can't get my strength back in my weak left leg. And they are taking the MS in consideration as well. But first things first.
Now, Friday evening, it's time for my weekly injection, and tme for me to get into my jammies and get comfy in bed ( I do sometimes react to the Avonex and get a fever). This is certainly a switch from my "before MS fridays"--of Mexican food and margaritas!
Even tho I'm supposed to go three times a week, I'm only going 2 because only on Tuesdays and Thursdays is my preferred therapist available at 4:30. See what a good employee I am being--trying not to miss any additional work. Like it will be appreciated....
And after the stretching (and after I have improved) we'll work on strengthining exercises to build up my abdominal muscles, to offset any weak back muscles, and also see if I can't get my strength back in my weak left leg. And they are taking the MS in consideration as well. But first things first.
Now, Friday evening, it's time for my weekly injection, and tme for me to get into my jammies and get comfy in bed ( I do sometimes react to the Avonex and get a fever). This is certainly a switch from my "before MS fridays"--of Mexican food and margaritas!
Tuesday, April 8, 2008
Is Anyone Out There?
Is anyone reading this? No comments, so I'm going to start assuming no one is reading this. And if no one is reading this, I'm gonna stop writing.
First Rehab is scheduled for Friday at Methodist. I guess the first one involves verifying my insurance (!) and then a physical assessment and then a little work. Im going to be scheduled for 3 times a week for 4 weeks. Then we'll re-evaluate how I'm doing.
First Rehab is scheduled for Friday at Methodist. I guess the first one involves verifying my insurance (!) and then a physical assessment and then a little work. Im going to be scheduled for 3 times a week for 4 weeks. Then we'll re-evaluate how I'm doing.
Sunday, April 6, 2008
Odds and Ends
Still waiting on the Dr. for a physical therapy referral. It most likely will be with TIRR (since they are on my insurance). But the Dr. wants to talk to the therapist, since I have multiple issues (the back surgery, si-joint problems and MS). Ernest and I take walks in the meantime. And they usually wear me out. I'm learning to give in to my sleepiness.
After much indecision, I told my Mom about the MS last night. For those of you who aren't familiar with my family, Mom lives in Atlanta (my Dad passed away in 2002), so does my younger brother Scott and his wife and 4 boys. My twin brother Jim lives in Raleigh, NC with his wife. Both brothers knew my diagnosis, but I was trying to keep it from my 84 year old Mom. She has her own health and other problems. But I found out one of my nephews overheard the conversation about my MS and between him, and the stilted conversations I found myself having with Mom, I figured it was time to tell her. She was spending the weekend with my brother so I knew she'd have a built in support group. She did take the news hard and I had to be the strong one in the conversation, really, really, really, downplaying my diagnosis and my own worries. She cried a little and worried that somehow the MS was "her fault." At which point I was able to laugh and say we could blame Dad and his darn Scottish ancestors (the highest incidence of MS per capita -- or whatever--is in Scotland). I know Mom is going to have to stew and worry about this for awhile before she accepts it. Although she did remember a friend of hers has a daughter with MS who is doing well.
After I had my surgery I noticed my entire back was COATED with iodine (from the pre-op procedures). My hospital gown kept sticking to it. When I got home I could only sponge bathe so I couldn't scrub it all off for a couple of days. Now I notice everywhere that was covered with iodine, is now peeling. Lovely.
Otherwise I'm getting back to normal. I did a load of laundry yesterday and cooked dinner (eggs--nothing too exhausting!).
After much indecision, I told my Mom about the MS last night. For those of you who aren't familiar with my family, Mom lives in Atlanta (my Dad passed away in 2002), so does my younger brother Scott and his wife and 4 boys. My twin brother Jim lives in Raleigh, NC with his wife. Both brothers knew my diagnosis, but I was trying to keep it from my 84 year old Mom. She has her own health and other problems. But I found out one of my nephews overheard the conversation about my MS and between him, and the stilted conversations I found myself having with Mom, I figured it was time to tell her. She was spending the weekend with my brother so I knew she'd have a built in support group. She did take the news hard and I had to be the strong one in the conversation, really, really, really, downplaying my diagnosis and my own worries. She cried a little and worried that somehow the MS was "her fault." At which point I was able to laugh and say we could blame Dad and his darn Scottish ancestors (the highest incidence of MS per capita -- or whatever--is in Scotland). I know Mom is going to have to stew and worry about this for awhile before she accepts it. Although she did remember a friend of hers has a daughter with MS who is doing well.
After I had my surgery I noticed my entire back was COATED with iodine (from the pre-op procedures). My hospital gown kept sticking to it. When I got home I could only sponge bathe so I couldn't scrub it all off for a couple of days. Now I notice everywhere that was covered with iodine, is now peeling. Lovely.
Otherwise I'm getting back to normal. I did a load of laundry yesterday and cooked dinner (eggs--nothing too exhausting!).
Wednesday, April 2, 2008
Ix-nay on the Ehab-Ray
Ok, there's a temporary hold on my going to Rehab/physical therapy. Turns out the place the Dr. recommended isn't on my insurance. They would "give me a discount" and insurance would pay 60% out of network. But if I find a place that is in network, insurance will pay 100%. So that was an easy decision to cancel today's appt.! But now I have to find another place.
May be just as well today because this morning I forgot to take my meds when I woke up. And as the morning wore on I sure hurt! Let that be a lesson to keep taking my painkillers. Clearly I'm not as healed as the painkillers deluded me into thinking I was.
May be just as well today because this morning I forgot to take my meds when I woke up. And as the morning wore on I sure hurt! Let that be a lesson to keep taking my painkillers. Clearly I'm not as healed as the painkillers deluded me into thinking I was.
Tuesday, April 1, 2008
First Steps
Today marks two weeks since surgery. I am now allowed up out of bed. So Ernest accompanied me while I took my first steps. We walked the length of our block and back. And I was exhausted!
Tomorrow I meet with my new physical therapist to get back into shape. Between the damaged nerve(s) in my left leg, and the muscles that have atrophied since November, I also have to deal with getting my general strength back since I've been using NO muscles for two weeks. But I'm anxious to see what my therapy will be like. With the MS factor thrown in, I'm not supposed to get overheated, so I'm thinking I may be swimming a lot. We'll see.
In the meantime, I guess I no longer get breakfast in bed! (Thank you Ernest dear!)
Tomorrow I meet with my new physical therapist to get back into shape. Between the damaged nerve(s) in my left leg, and the muscles that have atrophied since November, I also have to deal with getting my general strength back since I've been using NO muscles for two weeks. But I'm anxious to see what my therapy will be like. With the MS factor thrown in, I'm not supposed to get overheated, so I'm thinking I may be swimming a lot. We'll see.
In the meantime, I guess I no longer get breakfast in bed! (Thank you Ernest dear!)
Saturday, March 29, 2008
The second week
So I'm into my second week post surgery. I went to the Dr. on Thursday to get my incision checked out. I saw Mrs. Dr. who works in the office. She was very impressed with the stitch-wichery of the Dr. Apparently I have internal stitches that are dissolvable and externally he applied butterfly bandages--I don't have staples or a "railroad track" type of scar. Just a line. So my scar won't impede my bikini wearing (we won't discuss everything ELSE that will negate me wearing a bikini!)
I'm still on bed rest to minimize scarring (scarrinng in my spine, not cosmetic scarring). And I was absolutely worn out after my brief excursion to the Dr. I went home and slept for several hours. My family has been wonderfully helpful. The kids are doing what they can, Ernest's Mom spent a lot of time here, keeping up with the general chores and cooking! Yum! Good ol' home cooking. But now I'm more on my own. And perhaps more dependent on Ernest's cooking (uh oh). Ernest has been wonderful throughout this run-a-way train health experience. I think he has been impressed with my ability to handle all this; but what he doesn't realize is I couldn't have handled all these diagnoses, tests and treatments without his strength and support. He pretty much sat with me holding my hand through every test.
So what's next? Dr.s office is checking my insurance to find rehab or physical therapy to send me to. I do have an even more noticeable weakness in my left leg, between the damaged nerve and the weak/atrophied muscles. But I'm assured I will be able to climb stairs by myself in the not too distant future! Of course I've been compartmentalizing all these problems. Dealing w ith one at a ti me. So the first couple of hurdles are done....busy Admissions work is done. Surgery is done. Next, rehab and then finally getting rid of one MS diagnosis to be able to concentrate on the other MS and focusing on a healthy, happy year.
I'm still on bed rest to minimize scarring (scarrinng in my spine, not cosmetic scarring). And I was absolutely worn out after my brief excursion to the Dr. I went home and slept for several hours. My family has been wonderfully helpful. The kids are doing what they can, Ernest's Mom spent a lot of time here, keeping up with the general chores and cooking! Yum! Good ol' home cooking. But now I'm more on my own. And perhaps more dependent on Ernest's cooking (uh oh). Ernest has been wonderful throughout this run-a-way train health experience. I think he has been impressed with my ability to handle all this; but what he doesn't realize is I couldn't have handled all these diagnoses, tests and treatments without his strength and support. He pretty much sat with me holding my hand through every test.
So what's next? Dr.s office is checking my insurance to find rehab or physical therapy to send me to. I do have an even more noticeable weakness in my left leg, between the damaged nerve and the weak/atrophied muscles. But I'm assured I will be able to climb stairs by myself in the not too distant future! Of course I've been compartmentalizing all these problems. Dealing w ith one at a ti me. So the first couple of hurdles are done....busy Admissions work is done. Surgery is done. Next, rehab and then finally getting rid of one MS diagnosis to be able to concentrate on the other MS and focusing on a healthy, happy year.
Monday, March 24, 2008
On becoming conscious,,,
Okay, so I'm coming around into a more concious state! I think I slept all week. It seems every prescription they gave me "may cause drowsiness." I think it's all part of the plot to make sure I stay flat on myback in bed. But the Dr. agreed I could back off the prime sleep inducer, the muscle relaxers. That seems to help.
So now I can get to reading all those books and watching all those dvds. I'm up to visitors and phone calls too.
So now I can get to reading all those books and watching all those dvds. I'm up to visitors and phone calls too.
Thursday, March 20, 2008
A word or two or three as dictated from Colleen
I got home noonish on Weds. I am feeling pretty good. Although I have 4 viles of pills ythat I am taking...including MORE STEROIDS! You SJS folks should be happy that I am not arround you these days. Speaking of SJS the flowers are really beautiful...thank you.
The doctor is really suprised. He assures me reagular old herniations do not have there own blood supply. Everyone "radiologist and oncologist" all "knew" that it was a tumor. He even sent it to pathology, just in case. Again Ellen, the are advantages to not being normal.
So now I am just recovering, mainly sleeping alot. This truely has been a special Lenten season and holy week for me. Love Colleen
The doctor is really suprised. He assures me reagular old herniations do not have there own blood supply. Everyone "radiologist and oncologist" all "knew" that it was a tumor. He even sent it to pathology, just in case. Again Ellen, the are advantages to not being normal.
So now I am just recovering, mainly sleeping alot. This truely has been a special Lenten season and holy week for me. Love Colleen
Tuesday, March 18, 2008
Great News...It's Not a Tumor
I have just talked with Dr. Baskin. It is a disc not a tumor as previously discussed. Since it is not a tumor, there is no question of malignancy. The doctor went along one side of her spine and removed the disc as previously planned. The nerves were compromised by the disc but with it's removal should improve Colleen's mobility dramatically. He didn't have to brace her spine because his proceedure didn't compromise it that much (we can go through airport radar detectors without interruption) As soon as she is out of recovery she will be transferred to a room (instead of ICU as previously discussed). She should be home tomorrow, with a brighter mobility outlook. Ernest
Surgery Went Well
This morning the family made the very early (before 6am) trip to Methodist. Colleen's surgical prep. ran fairly ordinary. It took two tries to start the I.V. It has been one of the few times where her blood pressure was not elevated. I see this as a sign that all of the discussion has taken some of the stress from this proceedure, along with her confidence in Dr. Baskin running the operation "skin to skin". They didn't give her any good medication till she had signed numerous places on a document that rivaled our mortgage. She was wheeled down to the operating room at 7:05. Baskin touched base with the kids before surgery and gave them the run down of what proceedures and expectations of the surgery. Matthew and Katlyn have a limited history of Surgical Waiting Rooms. Matthew has been sleeping sitting up where Katlyn has taken a good nap on a couch. Matthew feels that this is truly a form of hell. The Surgery was set to start around 8:15. It is now 11:24 and the waiting room attendent has just informed me that they are closing and everything went fine. I will up-date as I know more. Ernest
Leaving for the Hospital shortly
I wanted to clarify one thing before we head off to the hospital: The change in diagnosis. The Dr. thinks all my back/leg problems were initially caused by a herniated disk as we originally thought back in November. But it was a small herniation that bumped into the already existing tumor and pushed the tumor into my nerves, causing all the pain, mimicing the symptoms of a regular herniation. The combination of steroids I've received for both my medical problems (the nerve root injections of cortisone followed by the intravenous and oral steroids) DID cause the herniation to resolve. Therefore proving the point of the pre-op (and NINTH) MRI. Prior to the steroids the herniation up against the tumor just showed up as soft tissue against soft tissue. After the steroids and the resolution of the herniation, a gap showed between the disk and the tumor--where the herniation had been. Therefore "justifying" the TENTH MRI with contrast which showed the characteristics of the tumor. As much as I hate to admit it, the ninth and tenth
Monday, March 17, 2008
Surgery Update II
It's a go. I passed my test. At least something was normal!
Tuesday, March 18, 8:00 a.m. No idea how long it will be, Check back for updates via Ernest.
Tuesday, March 18, 8:00 a.m. No idea how long it will be, Check back for updates via Ernest.
Surgery Update
My surgery date has been changed. No longer St. Patrick's day, we're trying for Tuesday, March 18. But stay tuned. Because in the words of Gilda Radner as Emily Litella,"it's always something...."
Last week's pre-op blood tests were a little funky with regard to my ability to clot. Apparently I'm taking a little longer than desireable (maybe because of some of the necessary meds I'm taking). Dr. says this wouldn't be a problem for most surgeries, but with surgeries on the spine you don't want a large clot--as that could cause pressure on the spinal cord. Never a good thing and he prefers to err on the side of caution.
So I retake the test Monday, St. Patrick's day. If that one shows the same thing, I'm off the meds for a week and we try again NEXT week.
Last week's pre-op blood tests were a little funky with regard to my ability to clot. Apparently I'm taking a little longer than desireable (maybe because of some of the necessary meds I'm taking). Dr. says this wouldn't be a problem for most surgeries, but with surgeries on the spine you don't want a large clot--as that could cause pressure on the spinal cord. Never a good thing and he prefers to err on the side of caution.
So I retake the test Monday, St. Patrick's day. If that one shows the same thing, I'm off the meds for a week and we try again NEXT week.
Monday, February 25, 2008
A Funny Thing Happened On My Way to Back Surgery
I was diagnosed with MS.
What is MS?
Multiple Sclerosis is a chronic, unpredictable disease of the central nervsous system (brain, optic nerves and spinal cord). It is thought to be an autoimmune disorder.
MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, depression, memory and concentration problems. The problems can be permanent or can come and go. Most people are diagnosed between the ages of 20 and 50. MS is not a fatal disease and the vast majority of people live a normal life span.
MS symptoms result when an immune system attack affects myelin, the protein insulation surrounding nerve fibers of the central nervous system. Myelin is destroyed and replaced by scars of hardened "sclerotic" tissue. The loss of myelin interferes with the tansmission of nerve signals.
What is MS?
Multiple Sclerosis is a chronic, unpredictable disease of the central nervsous system (brain, optic nerves and spinal cord). It is thought to be an autoimmune disorder.
MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, depression, memory and concentration problems. The problems can be permanent or can come and go. Most people are diagnosed between the ages of 20 and 50. MS is not a fatal disease and the vast majority of people live a normal life span.
MS symptoms result when an immune system attack affects myelin, the protein insulation surrounding nerve fibers of the central nervous system. Myelin is destroyed and replaced by scars of hardened "sclerotic" tissue. The loss of myelin interferes with the tansmission of nerve signals.
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