I was anticipating that my next blog would be about our trip to California. But I have way too much on my mind right now to focus on that sort of merriment. Hopefully this will help.
I had my first official neurology appointment today. I could hardly sleep last night too. I was having nightmares that Dr. Germin was either Dr. Leo Spaceman from 30 Rock or Max von Sydow. Both of them carried giant metal needles and were trying to stab me in the spine. I woke up so nervous about the idea of having the LP today. Even though it was only a possibility. But still a nightmare inducing possibility.
Dr. Germin's office was very cold and clinical. I can't say I liked anything about it. It was all black and chrome and sleek. I told Chris I think they used it as a set in the movie Vanilla Sky and I was afraid that I was going to get wiped like Tom Cruise. ( And yes, it always comes back to Cameron Crowe with me.)
But it is official now. I have MS. Dr. Germin's PA Stephen seemed skeptical when we told him the story. He even asked how I knew the word Diplopia. I told him that's the fancy word everyone keeps using with me, I figured it should part of my vocab now. But after reviewing the MRI, he looked very somber. Chris said it was because he was focusing on taking notes for Dr. Germin, but I don't know. So far everyone looks very skeptical until the see the MRI, then they are very serious. It makes me nervous.
The good news is that I don't have to have a LP (Lumbar puncture or spinal tap). At least not yet. And as of right now I don't think I will consent to having one.
The good/notsogood news is that I have an official diagnosis of MS. He didn't even need to check my bands to tell me. He said my MRI was "very interesting" and that he could tell I have problems with left side. It's true. Things like numbness and tingling in my hands and the fact that sometimes my left leg stops working and I trip, I have had I chalked up to being fat and out of shape and they have mostly been on my left side. We need to have another MRI done of my brain stem and spine. I think I will be able to handle it this time. If not, I have a bottle of magic valiums on my nightstand.
Also, I need to have another test done. A Nerve Conduction Study and Needle Electromyography Examination. The word needle makes me freak out for a moment. But I guess it's more like accupuncture needles than the giant chrome needle of my nightmares. I will have this done on both legs and arms. The info sheet says it can take 45 minutes per limb!
So yeah. I did pretty well emotionally until we left Dr. Germins. Then I became a bit of a mess. I have been crying off and on all day. It's a combo of PMS and all of this hitting me. I have never had a broken bone, major illness or surgery and now I have to accept that I will require a lifetime of care. I will not always need this many Dr.'s appointments at once. This is a bit of a frenzy because we are in the diagnosis phase. And since I may not have another acute attack for years, I may not have to see a doctor for years. But right now it all feels so absolute.
It's hard to describe why I am freaking out today when I haven't been this upset about it yet. It's a mix of being frustrated that I feel PERFECTLY FUCKING NORMAL when the doctors make me feel like I should feel like an invalid. But I don't. And worrying about how much Chris is worried about me. We had Stephen print off a copy of the MRI summary for us. Chris read it and was all "whoa.crap". He understands what all of these heiroglyphs mean. To me it's like this:
numbers numbers numbers
Findings: some shit about my ventricles... at least 4-5 small nodular and patchy areas of increased T2 stuff in my white matter measuring up to 12mm in my right frontal lobe.....
Impression: shit shit shit...abnormal T2 signal in the white matter tracts most prominent in the akdjfaklj region of the right frontal lobe ...demylinating process. Otherwise unremarkable MR examination of the head.
All I really want to hear is unremarkable!I wish my brain was really as unremarkable as I want to be. And my spine. Ugh. Can't wait to get the remarks on that :(
I've been feeling really good about this. But today was really bad for me. I found some books I want to read on MS. Including one by Richard Cohen, the husband of Meredith Viera. He has had MS for almost 40 years. (Of course he can't use his left arm anymore, can only walk the length of a city block and is legally blind.) He described his vision as like looking at everything as an impressionist painting. I hate impressionists. If I get to choose I want surrealism and cubism. But honestly, that's really what I had last week with the diplopia. And I hated that too.
Oh and I didn't have a 6th nerve palsy. I had an Optic Neuritis. He said it's not caused by my sixth optic nerve because that would have caused blurred vision, it's from the nerves in my spine. That is what causes double vision. So what are all those areas in my brain from? And what in hell in going to show up on my spinal MRI?
Anyway, I will leave you with some lyrics. We listened to a lot of our favorite road trip music over the weekend and this included the Jimmy Eat World album Futures. The song 23 has always gotten to me but now more than ever.
Amazing still it seems
I'll be 23
I won't always love what I'll never have
I won't always live in my regrets
You'll sit alone forever
If you wait for the right time
What are you hoping for?
I'm here I'm now I'm ready
Holding on tight
Don't give away the end
The one thing that stays mine
Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts
Monday, February 6, 2012
Thursday, February 2, 2012
Leaving On a Jet Plane
And yes, I was prepared to go head to head with the TSA about my eyepatch. My eyeball, not some C4, is located under there! I went without the patch at home but had to wear it in public. Florescent lights made my vision so much worse. The barista at Starbucks and the TSA agent made funny pirate comments. And I got to board first, which I could have done anyway with my first class ticket.
Let's talk about first class for a moment. This was my first time and while the seat was definitely nicer, there is a certain level of comraderie in coach that first class is lacking. My seat neighbor never spoke to me, even though I tried to talk to him. And when the awesome flight attendant Fransisco with his super sexy gay latino accent asked me if I wanted drink, and I replied " Is there whiskey here?", he didn't even wait for Fransisco to reply, he cut in with "Of course, it's first class."
And since Alaska Air charged me $30 for being 6 lbs overweight with my luggage, I drank 3 of those complimentary bitches. That's right Mr. Uptight-First-Class-Businessman, your glamour pirate seatmate can drink 3 Jack Daniels ON THE ROCKS in an hour and a half. This is something that counts in the lower classes of coach. Suck it. He also rolled his eyes when I asked if he could grab my carry on for me. Um... clearly my peripheral vision is limited jerk. Do you want me to drop it on your head?
Anyway, yes I was drunk and dropping my carry on in the airport. I can only imagine the idiot I looked like to Chris when I finally found him at baggage claim. But I'm so glad to be reunited, even under these circumstances.
So here we are. We are living with Sharon, the lady that Chris is renting a room from. She happens to be Chef Paul's Mom from Anthony's. She is a pretty cool lady. I arrived down here with three suitcases of books and clothes. We have a bedroom where we sleep on the floor and all the other furniture is pink :) I had the manic break up moment where I cut off all my hair. I look like a first lady but I love it. I though I would have a panic attack when I saw all the hair on the floor but it turns out that even temporarily loosing your sight makes you not give a fuck about something like hair.
Chris set me up with a highly recommended doc down here, Dr. Vesna. I automatically loved her. She was an Opthamologist in Czechoslovakia before she came to the US and re-enrolled in med school. That is dedication. And I love a doc who wears knee high boots with her lab coat. And has a pink stethescope when she is not a pediatrican. She sent me to Dr. Kelly, the Opthamologist, who told me that there are several spots on my MRI and put me on a two week course of Prednisone.
But it all comes down to this. So far, no one can officially say to me "Yes, you have MS. You have ( insert type here) MS, and this is what we can do about it." Except the Neurologist. I have my first appointment with Dr. Germin, who is apparently the MS guru around here, on Feb. 6th. This was the earliest we can get in but we are willing to wait. He came highly recommended from other docs and Neurologists that Chris spoke to. So far it's just "Yes, this is what MS looks like in the brain. You need to go to the Neurologist."
So Feb. 6th is the day. The this is so-for-fucking-real day. It's the day when I find out if they need another MRI of my brain and spine this time ( UGH!) and the day when they will schedule the most conclusive test, THE SPINAL TAP (triple motherfucking ugh) or as they like to sugar coat this shit, The Lumbar Puncture. But Chris said they have to check my bands to know everything they need to know.
I will keep everything updated on this blog. Facebook makes it seeem so gossipy. I have lots more good stuff to write about too. 5 days with impaired vision will make even this smallest things seem like magic. And the one thing I learned in the last week is that mine are numbered. Statistically I will live 10 years less then the rest of you. And I only have about 15 -20 years before mine get really shitty. So the rest of my life starts now. There are no more " I have time to..." thoughts left in my head. I know I have a while before this becomes a real disabling issue, but I'm not counting on anything any more.
I'm going to see everything I possibly can before I maybe can't see anything any more. I'm going to eat everything I can before I can't tell people about the crazy shit I ate anymore. I'm going to touch everything I can while I still have use of my fingers, and arms, and hands. I'm going to run as much as I can while I can still use my legs (I'm so glad I lost enough weight already that I can actually run now). I'm going to enjoy every single facet of this crazy little world while I have time here. I'm going to hug all of you and tell you when I think you are being stupid everytime I possibly can. I'm going to stick my hands in the mud and drive off into the sunset and save all my breaths for marveling at artwork and babies and sunsets.
What happened next...
I slept for 2 hours that night.
I was prescribed a 3 day Solumedrol infusion, so I continued my treatments on Sunday. That was also the day that I had to tell my Grandparents that not only do I have MS, I'm moving out of state in 2 days to seek treatments
I also had to quit my job of 6 years. There were tears. Mine were building up in my eye patch. As much as I don't miss the work that I did, I miss my Anthony's family.
Chris was supposed to come home to visit on the next Thursday, but he was able to get a last minute flight change to fly me to Vegas on Tuesday. First Class! In an eyepatch! That my Mom and Grandma helped me bling out. I mean, if you are going to wear an eye patch, WEAR the damn patch. Don't let it wear you.
As you can tell, I'm injecting a lot of humour into this. I've never been one to sit around and say "Woe is me," and after the initial Saturday night frenzy I was able to do some more research and really learn about what MS is. I thought I only new one person who has MS, Patricia. If you work at Antwan's you know Patricia. She comes in in her big power chair, can barely hold her head up, cries a lot, spills wine, falls over in the ladies room and is always mumbling to herself. For about 12 hours, I thought this was my future.
But that's not true. Patricia is a worst case scenario. And I know now that I haven't been dealt a death sentence, I've been issued a disability sentence. But it can be really hard to deliniate between the two when you are the person being diagnosed. MS is a disease that affects every person differently. It's an autoimmune disease that can affect any part of your body. Turns out double vision ( Diplopia) is the most common attack that people who have MS can identify. After reading through the symptoms and talking to 4 different doctors so far, I know this wasn't my first attack. It's just the first one I recognized. It's also a disease that attacks twice as many woman as men and between the ages of 25-35. And four times as many people are diagnosed with it in the Pacific Northwest then anywhere else in the United States. So it turns out I am a perfect candidate. But don't be concerned blog readers, it isn't hereditary but it is genetic.
So I spent Sunday and Monday telling my closest friends why I am suddenly dissapearing. It was hard. Leslie Gay, you get the award for taking it the hardest. You are my oldest friend and I wanted to be able to tell you in person so much but that would have made it even worse. And my sister, who I haven't even spoken to in over a year, got a ticket and chewed out a cop for pulling her over when she got the news.
The big irony of all of this is that I have become so obsessed with my health over the last few months. I was really concerned with my weight and potential diabetes that I have completely changed my eating habits. It's been 5 months with NO fast food. 3 months weening myself off of processed food and I had been back in the gym for 6 weeks. I lost 34 lbs. for peets sake! I'm wearing a size 16 pant now. In fact, one of the errands I ran with my Mom that same morning was dropping off all my size 20/22 pants and clothes at the Goodwill. The doc prescribed me Prednisone and I cracked a joke about how I was going to have to buy my fat pants back :) He looked unclear about how to react to that.
Oh and Meagan Stokke, I could never have packed without you. Thank you for being so well organized when I was a mess. We didn't forget anything. And I haven't worn a single pair of socks, it's been so nice.
I was prescribed a 3 day Solumedrol infusion, so I continued my treatments on Sunday. That was also the day that I had to tell my Grandparents that not only do I have MS, I'm moving out of state in 2 days to seek treatments
I also had to quit my job of 6 years. There were tears. Mine were building up in my eye patch. As much as I don't miss the work that I did, I miss my Anthony's family.
As you can tell, I'm injecting a lot of humour into this. I've never been one to sit around and say "Woe is me," and after the initial Saturday night frenzy I was able to do some more research and really learn about what MS is. I thought I only new one person who has MS, Patricia. If you work at Antwan's you know Patricia. She comes in in her big power chair, can barely hold her head up, cries a lot, spills wine, falls over in the ladies room and is always mumbling to herself. For about 12 hours, I thought this was my future.
But that's not true. Patricia is a worst case scenario. And I know now that I haven't been dealt a death sentence, I've been issued a disability sentence. But it can be really hard to deliniate between the two when you are the person being diagnosed. MS is a disease that affects every person differently. It's an autoimmune disease that can affect any part of your body. Turns out double vision ( Diplopia) is the most common attack that people who have MS can identify. After reading through the symptoms and talking to 4 different doctors so far, I know this wasn't my first attack. It's just the first one I recognized. It's also a disease that attacks twice as many woman as men and between the ages of 25-35. And four times as many people are diagnosed with it in the Pacific Northwest then anywhere else in the United States. So it turns out I am a perfect candidate. But don't be concerned blog readers, it isn't hereditary but it is genetic.
So I spent Sunday and Monday telling my closest friends why I am suddenly dissapearing. It was hard. Leslie Gay, you get the award for taking it the hardest. You are my oldest friend and I wanted to be able to tell you in person so much but that would have made it even worse. And my sister, who I haven't even spoken to in over a year, got a ticket and chewed out a cop for pulling her over when she got the news.
The big irony of all of this is that I have become so obsessed with my health over the last few months. I was really concerned with my weight and potential diabetes that I have completely changed my eating habits. It's been 5 months with NO fast food. 3 months weening myself off of processed food and I had been back in the gym for 6 weeks. I lost 34 lbs. for peets sake! I'm wearing a size 16 pant now. In fact, one of the errands I ran with my Mom that same morning was dropping off all my size 20/22 pants and clothes at the Goodwill. The doc prescribed me Prednisone and I cracked a joke about how I was going to have to buy my fat pants back :) He looked unclear about how to react to that.
Oh and Meagan Stokke, I could never have packed without you. Thank you for being so well organized when I was a mess. We didn't forget anything. And I haven't worn a single pair of socks, it's been so nice.
Blog #1
So by now you know. At least part of it. You know I am in Las Vegas, but not why. I hope I can give you some answers or some more information if you know what is going on. But I'm a little over reciting all the details so this will be condensed a little.
I'll start at the beginning...
Saturday the 21st of January
6am: My phone was chirping and I picked it up to make it stop. The screen was double and blurry and I thought to myself, "I'm too tired for this." Commence sleeping.
9am: I wake up for real and head to the bathroom. Everything is still a blur. I start to wonder what I had to drink last night. It was only a glass of wine over dinner. Everything is weird and double. I can't focus on anything. There is two of everything and I am so confused. Considering I have been snowed into the house for the last three days, I start to wonder if I have ACTUAL cabin fever...
10am: Even though I can't see anything singly, I'm dying to get out of the house. I tell my Mom she will have to drive because I feel weird and have double vision. I text Chris and he thinks maybe I have an ear infection. But I don't really believe him because I feel fine. My head doesn't hurt, my ears are fine, etc. I'm not prone to migraines but maybe I'm getting a migraine?
230pm: Excedrin Migraine is recalled, who knew? Eye drops didn't help, Tylenol and an energy drink didn't help. I've been texting with Chris all day and told him that I was going to go to Urgent Care if this wasn't better by 3. I know myself and this is uncharacteristic and strange.
3pm: Dr. Haydu (love him) at Urgent Care is concerned. He says I am suffering what is called a Sixth Nerve Palsy. He calls a Neurologist who says I need an MRI and to go to the ER, because this is symptomatic of a much more serious condition. Even though it is a worst case scenario, I'm not taking any chances. We head to the ER.
6pm: I'm admitted to the ER. One of the benefits of having a medical husband is that I know most of the medical professionals in this town. I was fast tracked at Urgent Care and I knew my admitting nurse and ER Tech. I meet the ER Doc, Dr. Ast. He runs the same tests as Dr. Haydu and sends me to MRI.
Let's just talk about MRI's for a second. I told them I was fine with the MRI as I have never had claustrophobia before. But I imagined it being more like a tanning bed and less like being inserted into a tampon! I got half way in and made them pull me out. Umm, Valium please! I'm not going to go into the idiot nurse who came and spilled my blood everywhere. I had to clean myself up with tissues while she held the line with her damn thumb. And my tech, Justin (Chris' former partner) , chided her with the "if you only knew whose wife you were messing with" face. By the way, being asked if you are THE Mrs. McKenna in the ER feels really good.
That MRI was intense. Once I didn't care that I was shoved in a tampon, they started with 30+ minutes of machine gun fire! Ugh. I told the tech that they should use them at Guantanamo Bay, because if I knew any state secrets I would tell them all in order to get out of the machine.
10pm: I've been texting Chris poorly spelled texts all day. We are just waiting for results and Mom and I are laughing and hoping the MRI shows that I have a chunk of mascara in my eye and man am I an idiot.
But that's not true....
I have MS. Multiple Sclerosis. Yep. Whoa. Good thing I am on valium.
I made Dr. Ast show me the MRI. I don't know how to read these things but dammit I need to see this!
I'm not going to listen to some stranger and accept his life altering news. I want to see it! And I did. They showed me the spots of inflammation in my brain. I thought I could see three. Turns out there are several more. I broke this news to Chris on the phone. He was on a case at a hospital in Las Vegas and luckily his boss was right there when I broke the news. He was sent home and you can imagine that we spent the rest of the night on the phone crying. We agreed that I needed to come Vegas ASAP. So long old life, the new rest of my life begins now.
I want to thank Jessica Martinez for coming to my rescue at the hospital. It was awesome to have a friend there listening to the Dr's orders while my Mom and I cried. And then to help me home and eat oatmeal and listen to me crack jokes about blinging out my eye patch...my future walker...my inevitable wheel chair....
So there you have it. There was no bar fight. I just started a rumor about myself so I didn't have to talk about what was really going on until I had more answers. But gettting middle of the night texts asking if I really got in a bar fight and lost an eye or if it was true that I was in a treatment program in Nevada was priceless. Really, you guys think I am way cooler than I really am.
I'll start at the beginning...
Saturday the 21st of January
6am: My phone was chirping and I picked it up to make it stop. The screen was double and blurry and I thought to myself, "I'm too tired for this." Commence sleeping.
9am: I wake up for real and head to the bathroom. Everything is still a blur. I start to wonder what I had to drink last night. It was only a glass of wine over dinner. Everything is weird and double. I can't focus on anything. There is two of everything and I am so confused. Considering I have been snowed into the house for the last three days, I start to wonder if I have ACTUAL cabin fever...
10am: Even though I can't see anything singly, I'm dying to get out of the house. I tell my Mom she will have to drive because I feel weird and have double vision. I text Chris and he thinks maybe I have an ear infection. But I don't really believe him because I feel fine. My head doesn't hurt, my ears are fine, etc. I'm not prone to migraines but maybe I'm getting a migraine?
230pm: Excedrin Migraine is recalled, who knew? Eye drops didn't help, Tylenol and an energy drink didn't help. I've been texting with Chris all day and told him that I was going to go to Urgent Care if this wasn't better by 3. I know myself and this is uncharacteristic and strange.
3pm: Dr. Haydu (love him) at Urgent Care is concerned. He says I am suffering what is called a Sixth Nerve Palsy. He calls a Neurologist who says I need an MRI and to go to the ER, because this is symptomatic of a much more serious condition. Even though it is a worst case scenario, I'm not taking any chances. We head to the ER.
6pm: I'm admitted to the ER. One of the benefits of having a medical husband is that I know most of the medical professionals in this town. I was fast tracked at Urgent Care and I knew my admitting nurse and ER Tech. I meet the ER Doc, Dr. Ast. He runs the same tests as Dr. Haydu and sends me to MRI.
Let's just talk about MRI's for a second. I told them I was fine with the MRI as I have never had claustrophobia before. But I imagined it being more like a tanning bed and less like being inserted into a tampon! I got half way in and made them pull me out. Umm, Valium please! I'm not going to go into the idiot nurse who came and spilled my blood everywhere. I had to clean myself up with tissues while she held the line with her damn thumb. And my tech, Justin (Chris' former partner) , chided her with the "if you only knew whose wife you were messing with" face. By the way, being asked if you are THE Mrs. McKenna in the ER feels really good.
That MRI was intense. Once I didn't care that I was shoved in a tampon, they started with 30+ minutes of machine gun fire! Ugh. I told the tech that they should use them at Guantanamo Bay, because if I knew any state secrets I would tell them all in order to get out of the machine.
10pm: I've been texting Chris poorly spelled texts all day. We are just waiting for results and Mom and I are laughing and hoping the MRI shows that I have a chunk of mascara in my eye and man am I an idiot.
But that's not true....
I have MS. Multiple Sclerosis. Yep. Whoa. Good thing I am on valium.
I made Dr. Ast show me the MRI. I don't know how to read these things but dammit I need to see this!
I'm not going to listen to some stranger and accept his life altering news. I want to see it! And I did. They showed me the spots of inflammation in my brain. I thought I could see three. Turns out there are several more. I broke this news to Chris on the phone. He was on a case at a hospital in Las Vegas and luckily his boss was right there when I broke the news. He was sent home and you can imagine that we spent the rest of the night on the phone crying. We agreed that I needed to come Vegas ASAP. So long old life, the new rest of my life begins now.
I want to thank Jessica Martinez for coming to my rescue at the hospital. It was awesome to have a friend there listening to the Dr's orders while my Mom and I cried. And then to help me home and eat oatmeal and listen to me crack jokes about blinging out my eye patch...my future walker...my inevitable wheel chair....
So there you have it. There was no bar fight. I just started a rumor about myself so I didn't have to talk about what was really going on until I had more answers. But gettting middle of the night texts asking if I really got in a bar fight and lost an eye or if it was true that I was in a treatment program in Nevada was priceless. Really, you guys think I am way cooler than I really am.
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