Wednesday, June 19, 2013

This year sucks too!!!

I realized I promised to write more and that was in 2012 and now it's the middle of June 2013. Well, it's been an outstanding year. I got sick and wound up in the hospital in January. My stomach became distended again and I started throwing up and bam, back at the ER. They accessed my port, filled me with fluids and once again put an NG tube down my nose. Up to North 5 I went, to all my favorite nurses which actually really helps  because you feel like your friends are taking care of you. The plan was to see if they could get my stomach back to normal without surgery. Ha, ha, ha. My surgeon came in the next day which was his day off. He always makes me feel like I'm his most important patient which is one of the reasons he's such a good doctor. This was a Friday and he said he had booked an OR for Monday. I knew what that meant, a permanent illeostomy. He said he hoped that I would get better over the weekend, but if not I was having an operation or rather, a life altering operation. This was the thing I dreaded. Having a permanent bag attached to my stomach where I would poop for the rest of my life.
So, of course I had to have the operation and I woke up in a lovely morphine induced fog. I was in so much pain since my surgeon had as my best friend so eloquently put it "gutted me like a fish." It turned out I had twenty staples in my stomach which my best friend also counted because I was so swollen I couldn't see my entire abdomen. They put me on a morphine pump with a steady stream of morphine given to me as well as the ability for me to push a button and get more. I was really bad about pushing the button. I would think I was pushing it so much when in fact it I wasn't pushing it enough and I would be in so much pain my nurse or one of my tech's would laughingly yell at me to "push the button!" My room was filled with flower arrangements since none of my family or my in-laws live near me. I always like getting flowers when I'm sick, I think it makes the room feel cheerier since hospital rooms are usually pretty blah looking. I also got little gifts from the friends that came to visit me and my therapist came and brought me a teddy bear which she says I put on the pillow that was on my stomach and said "I can talk to you now because I'm on morphine." Apparently I say a lot of funny things when I'm hopped up on drugs. By the way, Dillaudid is a much better drug, but we discovered that I'm allergic during one of my hospital stays so morphine it is.
I was in the hospital for about two weeks adapting to my new way of life and healing. It's going to take at least a year for me to fully recover. I had to learn how to change and deal with the ostomy appliance. I'm still trying to handle both and of course my MS didn't like my hospital visit so I got a nice big exacerbation which has also not quite gone away. After I got home I have had nurses, occupational and physical therapists and I still have most of them. Somewhere around April I came down with pneumonia which knocked me out for over a month. I had to email my neurologist and let him know that I had gotten pneumonia. I wrote that I had never had it before so now that I did I could cross it off of my bucket list. I'm a funny patient. So after all that we had to take our dogs for a teeth cleaning. One dog they found a mass in and removed it and discovered he has cancer and the other dog only got as far as a blood test and the vet found that his liver values were ridiculously high and he may have cancer too.
So my declaration that this year sucks too is completely true. We have to go back to the vet and talk
with the oncologist and I'm expecting that won't turn out well. Nothing with me does. It's not poor
little me. It's fact. I'm afraid to see what the next six months bring, from experience I'm thinking it can only be bad.

Friday, November 16, 2012

It Is Harder To Write About The Good Stuff

So, it's been a really long time since I've written in this blog and that's not what I set out to do. I didn't realize that thinking back to my life before my MS diagnosis was going to be this hard. It's been 12 years for God's sake. I miss so many stupid things and I guess not so stupid things like wearing great clothes. I used to have a black leather skirt which was acceptable enough to wear to work. I would wear it with a sweater and some beautiful black high heels. I was pretty small, like a size 1. I had long reddish, brown hair (my mom called it chestnut brown), I was kind of flat chested, but I had great legs. It's silly, but I miss guys complementing me on my legs. I think that's how I got Marc's (my husband's) attention. Now I look at my legs and both knees are destroyed after falling so many times. My legs are also always covered in bruises. I am certainly no longer a size 1. More like a size 8. I have a really attractive 7" scar on my stomach from a horrible operation I had in 2008 which I will write about later.

I miss going to client lunches and expensive office parties. I miss hanging out at the local bar with my co-workers. I miss having money!!! I loved having a great job that paid well. I can remember when I worked at my last job before MS, I would walk to my bank which was next to Rockefeller Center and I would pull cash out and sometimes I would walk to the big Barnes and Noble on Fifth Avenue and buy some books and then I would walk back to the office stopping at Au Bon Pain to get some delicious hot soup. Sometimes I would stop into Strawberry's (a clothing store that I'm sure doesn't exist anymore) and browse. At Christmas time it was always great to stop and look at the tree and the skaters at Rockefeller Center. I miss walking. I miss not stumbling. I miss not falling. I get so sad when I think about life before using a cane or a walker. I became an old lady at 39.

I am making a promise to myself to write here much more frequently. I think it helps to get it all out. I think I have a lot of interesting things to say to other MS patients and regular people.. Believe me, no one asks for this. I do see my life as being ruined. I will never be that pretty girl that strolls confidently down Fifth Avenue again. I will never have money again. I will never think about my future in a positive way again. I know I'm supposed to have that "I have MS it doesn't have me" attitude, but my question is "then what do you have?" More later...




Thursday, September 20, 2012

The First Doctor Who Was Wrong

So, after my bout with optic neuritis I made an appointment with a rheumatologist. He was going to run some tests to see if he could figure out what caused it. He tested me for Lyme Disease, Lupus, Aids and a bunch of things I can't remember. Everything came back negative. This was about twenty years ago so forgive my memory lapses. I think he also ran some psychological tests too. The last test that he was going to do was an MRI to check and see if I had Multiple Sclerosis.

I was scared out of my mind. Back then they didn't have all of the drugs they have now like Avonex, Copaxone, Betaseron, Tysabri, etc. MS was pretty much a death sentence. You got really sick, you wound up in a wheelchair and then you died. Do not pass go, do not collect $200 dollars. MRI's were really expensive back then too. Something like two thousand bucks if I am remembering this correctly.

 An aside to this whole story is that by this time I was living on my own in Manhattan. I lived on 34th Street and Park Avenue in a doorman building with an elevator and a concierge desk in the lobby. My apartment was a small one bedroom with a tiny kitchen, but a good size bathroom. My view overlooked this pretty courtyard in the middle of the building where the super lived so he kept it up really well. It wasn't a palace, but it wasn't a dump either and I think it was about $900 bucks a month. There were some other places I looked at which were cheaper, but didn't have doorman. My mother and father had retired to upstate New York, but were very insistent that I live in a building with a doorman. I think they ended up paying the first and last month's rent as well as the realtor's fee to convince me to move. The money was a stretch for me, but it was a nice apartment. I'm sure that apartment now is worth at least three times as much.

So, my point in all of this is I didn't have any extra money for this MRI. My mother refused to tell my father about this in order not to upset him - he had high blood pressure and a bleeding ulcer. She didn't have the extra money either. The rheumatologist who's name I lost years and years ago said to me he wasn't really concerned. 

He said ( I swear I'm not kidding about this) "Don't worry about having the MRI. I don't think it's necessary. I'll bet my practice that you'll never get Multiple Sclerosis."

It's pretty unbelievable isn't. In the coming weeks if you stick with me you will discover that he wasn't the only doctor who felt this way. I have some wonderful stories (I'm being totally sarcastic)
about my journey with this disease. You just have to be patient with me, I thought I could write every night, but sometimes I just too tired. It's probably because I have MS!!! Lol.
















Thursday, September 13, 2012

An Old Saying

This quote is from the season premiere of "The Sons of Anarchy" which aired on 9/11/12.


"There's an old saying: that which doesn't kill you makes you stronger. I don't believe that.
I think the things that try to kill you make you angry and sad. Strength comes from good
things; your family, your friends, the satisfaction of hard work. Those are the things that will keep you whole. Those are the things to hold onto when you're broken."



In my opinion, sometimes writers for television get it right and sometime they get it really right.
When you get sick you hear that saying over and over again, "what doesn't kill you makes you
stronger." I never felt that quote was complete until I heard it in the way it was written on SOA.
Something about it spoke to me. I am obviously not talking about the visuals that went along
with it, but the meaning of the words. I liked it a lot and wanted to share.


Wednesday, September 12, 2012

Demystifying The Good Looking Doctor

Sorry for that brief pause. One of the ways I know my MS is acting up is when I start having these little emotional breakdowns that cluster together and stop my life temporarily. This is where my head is at right now, but I am determined to get this out so here I go.

One thing I did not mention about my eye doctor is that he was my family's doctor and my mother and my sisters and I thought he was particularly handsome. That was until that day. There I was sitting in the exam room hearing that my vision loss was an actual thing. It was called Optic Neuritis or at least that's what my eye doctor thought it was. I know I was in my late 20's because I started yelling at him saying "I'm not even 30 yet and you're telling me my vision is gone?" and then I start asking "how could this have happened?" Now here's where the eye doctor stopped being the "cute" doctor and began being the "bad" doctor. He says to me (I'm paraphrasing here because it was about 20 years ago) "Well, people with Aids get this quite frequently." WHAT??? Now here's where I go from being a patient to being a hysterical patient. He's telling me that I've lost my vision and I may have Aids. Then he suggests going for a blood test to find out what's going on. Perhaps he should of suggested that FIRST! I remember walking out of the office with an eye patch on, crying, not being able to see and trying to hail a cab on Park Avenue.

I went directly to a lab that drew my blood. Then I went to my apartment and called Marc and my mother. My mom and dad were retired and living in upstate NY. My mom took the first Amtrack train that was available to Grand Central Station. Marc, who was slightly freaked out (Gee, could it be that my asshole eye doctor said this could be from Aids) came to my apartment after he picked up a prescription from the eye doctor for Prednisone.

 If you've ever seen "My Big Fat Greek Wedding" you'll remember that the father was always spraying Windex on everyone because he thought it cured everything. Well, it is my belief that Prednisone is the Windex of the medical world. For those of you who don't know, it is a steroid and it is very strong. You also have to take a ton of pills for it to be effective and then you have to slowly back off of it or it really makes you sick. Most of the time it makes you sick before you start to get well anyway. I think I started by taking something like 20 pills for five days, then 10 pills for three days and so on. My mom stayed with me for the whole time because those pills made me so sick I could hardly move. There was no way I could work and we just waited to see if my vision returned. Somewhere around day five my sight started coming back.

After I was better I believe I saw my eye doctor one more time. He wanted me to see a Rheumatologist to get more tests to see what the cause of this incident might be (it was not anything Aids related by the way) and I got a referral from him. That was the last time anyone in my family ever saw that eye doctor. He is certainly not the last doctor I saw who had a terrible bedside manner, but he was most definitely the first.

I learned then that just because a doctor is good looking and went to medical school doesn't mean they are smarter or kinder or better than anyone else. A doctor is just a doctor. Fortunately as time went on I have met some amazing ones.





Thursday, September 6, 2012

Filling Scripts (a pause in our story)


Eight different prescriptions need to be filled.

Three places they need to be ordered from.

Chances of all of them being filled without a problem!

Priceless.......................................but no way in hell that happened.

Tuesday, September 4, 2012

The First Sign (not a sci-fi movie)

As I grew up I pretty much followed the standard parental agenda. Go to high school and get good grades and then go to college. I went to the High School of Music and Art when it was on 125th and Convent Avenue in Harlem. You had to major in either Music or Art and then keep the rest of your grades up. It was a balancing act, but I did it. The exciting thing around that time is that they made the movie "Fame" using kids from our school and then the kids from the High School of Performing Arts. They later merged into one school, but for the movie we were all invited to the premiere. Even us lowly art students who weren't in the movie. It's fun to watch it now because it's like a living yearbook. Many years later I saw one of my high school friends playing a doctor on "Friends".

Then I went to a small liberal arts college in New York. My idea was that I wanted to go into film and television. I remember sitting around the table with my parents and my father asked me what I wanted to do and I told him, then he paused for a moment and said I should become a welder. My mother said he was kidding, but I wonder if he was having a "Flashdance" premonition. Anyway, I'm sorry I'm giving you all of this backstory, but it felt funny just jumping into the illness. Looking back I definitely should have moved to California for my career, but back then when you went to high school they didn't prepare you as much for life after college as they do now. I graduated from college and ended up going into TV since film really was in LA. I worked in several television production and post productions houses in New York and I slowly worked my way up the ladder. It wasn't easy at all for women going into a television career. It was run by what we called "the old boys club" which meant a lot of older Caucasian  (trying to be politically correct here) married men looking to have a pretty young girl on the side. Trying to do your job and dodge their advances actually was my career when I was in my early twenties All of my plans for having a creative job went out the window when I realized that creative meant doing a lot of menial work like getting coffee and ironing clothes for the talent whereas middle management meant organizing the video library and buying tape stock and having the vendors take you out to fancy lunches. Yes, at the time I was that shallow.

So, I moved to various scheduling departments and tape libraries in some of the largest post houses in Manhattan. It's sad that they are all gone now, but back then it was the late  80's, a time of complete excess for all. I can remember at Christmas I would get boxes of Godiva chocolates and bottles of champagne from my clients. Also during this time I had met the man who would become my husband. It was funny, everyone I worked with back then met their husbands or wives at work and I can say that today which is about twenty years later, we are all still married. After I met Marc I ended up getting a job where I ran both the library and shipping departments. A friend I still keep in contact with who worked for me at one point said that "I was tough, but fair." I think that pretty much says it. It wasn't easy though, all of my staff were mostly men. I also ordered the massive quantities of tape stock that we used and because of this I used to get taken to lunch by reps from Sony, 3M, Fuji, etc, those were the days of the two hour very fancy drinking lunches. They were probably completely inappropriate, but they were fun. So here it comes. This is where the course of my life started to begin it's dismal fall into the disaster it is today.

One day I was sitting in my office when it felt like something was in my eye. I wore hard contact lenses back then and those of you who also wore them will understand when I say if you got a piece of dirt under that lens it felt like someone was stabbing you in the eye with a knife. Really unpleasant.
I went to the bathroom and washed my lenses out, but it still felt uncomfortable. Later when I went home I would always take my lenses out and put on my glasses. It still felt like there was something in my eye. The next day I woke up and when I looked at something it was like I had a grey dot in front of my eye. I called Marc (at this point we were seriously dating, but we worked in two separate places and we each had our own apartments) and I agreed to see how the day went and if it got worse I was going to call my eye doctor. By the time I got to work the grey dot had gotten much bigger and I couldn't see very well when I looked straight ahead, but I still had some peripheral vision. I called the eye doctor and got an appointment for later in the day. I got to the eye doctor's office and they put some drops in my eye and told me to wait. Then he finally saw me and looked at my eye through one of those fancy microscope things. Then he sat back and looked at me and said that he thought I had something called Optic Neuritis and that I was losing the vision in my right eye. That is when I lost it and started yelling at him.