dawnryan

This was me around the time of my diagnosis... before the steroids and all the crap that goes with a dx such as this.
How it all Began...
In May of 1997 I left my job of 7 years. A job I loved (minus the shift work) for a M-F day job. During the first week I knew I made a big mistake. I was miserable...I cried every night...and was so stressed out.
At this point I had NO CLUE what stress was...because a week after starting my new job, my father passed away unexpectedly. My brothers and I had little choice but to remove him from life support--I was not prepared at such a young age to make that kind of decision and I was an emotional mess. So on top of leaving my job, hating my new job, my father dying, I now became the executor of my father's estate..talk about STRESS.

The Month that Changed my Life...

In August of 1997 my then husband and I were putting in a privacy fence. I bent down to pick up a post and both my arms went numb from my hands to my shoulders. I ended up going to the doctor later that week because the numbness had not gone away. I was diagnosed with Carpal Tunnel Syndrome, and put on day pro.

Things got worse...September 1997
The numbness continued over the next few weeks and at times when I bent my neck down this shooting electrical feeling would travel up my arm and down my body. I assumed it was part of the carpal tunnel and thought nothing of it. Over the month of September I noticed that I was becoming very clumsy and forgetful. I blamed it on stress.
I was more tired than I had ever been in my life; it was like I could not get enough sleep. My balance was so off that I would bump into things that were clearly in my path, but for some reason I hit them anyway, on foot and in my car!
I began to blame it on a "pinched nerve" that I decided was really what I had. I became Dr. Dawn and self diagnosed myself. I figured my doctor would soon figure out it was not carpal tunnel and agree with me it was a pinched nerve. However, I kept taking the Day Pro and decided when I had finished the prescription I would return to him with my thoughts.
October 1997...

During the month of October things got worse. I was nauseated constantly, dizzy, tired, bruised from bumping into everything in sight, my balance was so off that at times I would literally fall off my computer chair at home, I began to mix up colors and numbers, I even "forgot" if red meant stop or go at a stop light. I was getting frustrated and honestly felt that I was not a part of my own body anymore.
Saturday Oct 25, 1997...

We worked at my dad's house all day and my brothers kept telling me I was not "with it" they noticed I was walking around in a daze and I told everyone I needed to go home and sleep...the stress of everything had finally got to me, so I thought. I went home and fell into bed and slept for over 12 hours.
Sunday Oct 26, 1997...

When I woke up Sunday morning I didn't know where I was or who I was. The right side of my body was numb and I could not walk without falling over. It took me about 10 minutes to figure out how to call my mom on the phone. My then husband was sleeping, having worked midnights and I didnt want to bother him for a "pinched nerve". My mom, who is a nurse, listened to what I was saying and immediately came over and took me to the ER. They did neurological testing all day and I was referred to my doctor.
Monday Oct 27, 1997...

I saw my Dr. and he listened to me for a few minutes, said it may be a pinched nerve, (I think to calm me) then ordered an MRI. I pretty much got worse that night. My entire right side lost all feeling. However, I still insisted it was a pinched nerve.
Tuesday Oct 28, 1997...

I had the MRI. Later that night I realized that I could not write my own name, I could not remember when my then husband and I were married..(Only a year before). We sat on the bed and he quizzed me over and over and it was like I was in first grade. The weird part was, I knew what I wanted to say but I could not figure out how to form those words or write the letters. It was so frustrating.

Wednesday Oct 29, 1997
I insisted on going to work even though I had to be taken and picked up because I could not drive, not to mention the fact that I was stumbling all over and pretty much useless. However I had to go on, if I went to work, then for sure I was ok, nothing really bad was happening to me. Pretty twisted thinking huh. Looking back, it was my way of coping. I was not going to believe something bad was happening to me.
My best friend came and got me from work and we went to lunch. She made me write my name and said "Dawn that is NOT your handwriting" Then she asked me if I had ever heard of Multiple Sclerosis, I said yeah, but I didn't know much about it. She then told based on my symptoms she thought I had it. I became defensive and said "It's a pinched nerve; I don't know why they are wasting their time on an MRI for a stupid pinched nerve"
Later that day my mom picked me up from work and I cried all the way home. I told her what Laurie had said and my mom was trying to calm me down and actually, for the first time, I was realizing I might have something more than a pinched nerve.
We got home and my then husband was just getting up (he was on midnights that week) and I told him, blubbering, that Laurie I thought I had MS..and I suddenly in like a minute babbled on about how my life was over, and I would be in a wheel chair and blah blah blah. He finally told me to SHUT UP until I saw the doctor and knew for sure what we were dealing with. I was upset at his apparent lack of concern for me and so I got online and stayed online almost all night researching MS.

Thursday Oct 30, 1997...

That morning I made the mistake of listening to a John Denver CD; I cried and cried to Rocky Mountain High! I attempted to clean the cat box, only to get STUCK IN IT when I lost my balance and fell into it, and unable to feel my right side, well I was literally stuck.
I screamed for John, who was sleeping. He had worked midnights and was resting until my Dr. appointment. He was angry that I tried to clean the cat boxes, angry that I woke him up, he was just being a dick, (to be honest). I honestly felt all alone. We fought all the way to the Doctor's office and he just was acting like this total stranger and at that moment I had no clue who he was anymore. I was just so angry with him.
You know when you go to the doctors office they have bad news for you when the doctor wont look you in the eyes or even look your way...he looked at John, he looked at my mom, but would not look at me. Not a good sign.
He told me (I should say, he told my mom and John) that the MRI indicated the presence of lesions on my brain...his exact words were "The left side of your brain is literally COVERED with them..." At that point I was pretty much in this trance...he then said, I had either
A Brain Tumor
Cancer of the Brain
or
MS

I could not utter a word...but was thinking, "OK, what is the fourth choice"
It all happened so fast. I was hearing him, but not really listening to what he was saying. I kept hearing Brain Tumor or Cancer of the Brain and at that point MS was sounding kinda good to me.
I was sitting there absorbing it all; John was sobbing...my mom looked frozen in time with this 'look' on her face that I cannot even begin to describe and I felt like someone had smacked me into next week. I honestly couldnt move or talk, I just sat there. I dont think I heard anything the doctor had to say from that point on, nor did John. Thank God my mom pulled herself together and was able to listen and get the information we needed.
After the initial shock wore off John looked at me and said "I married you for better or worse, this is our worse, and things will get better" Turns out the man I married did not know how to show emotion, or compassion or concern. So when there was even a hint that something was wrong with me, rather than hug me, or comfort me, or help pull me out of that damn litter box, he chose to yell at me...somehow it helped him cope to not have to deal with the real issue at hand. Little did he know what we were really up against.
Friday Oct 31, 1997...

John and I went to the University of Chicago and I was pretty much tortured all day, but was in amazingly high spirits...or looking back I could have been in shock. After numerous tests they concluded that I did indeed have MS. Yeah...it wasn't a tumor, it wasn't cancer and it was manageable...it sucked but knowing it wasnt a tumor I was actually relieved.
I was finally admitted to a room around 9 p.m. and had another day of torture to look forward to. John decided to go home...it had been a long day for both of us and he a 2 hour drive back. The nurse came in around 10:30 p.m. and told me she was going to put in a catheter in...I think my head spun in five directions...A CATHETOR I flipped out, and refused it...she said it was doctor's orders, so I told her I was checking out.
I called my best friend, who eventually got a hold of John and he called me. Needless to say the stress of the entire past week hit me then...I cried and begged him to come back and get me. I wanted to be home, with my cats, in my own bed, with no cathetor in me...(work with me here...I was very emotional!)
So I told the nurse I was leaving, after several interns tried to talk me out of it, I was finally given my MRI films and checked myself out, against the Doctor's advice. A few hours later I was back in our car, heading home. It was an emotional ride home at best. John was mad at me...I was a basket case.
John was upset because I was leaving The University of Chicago...which had one of the more progressive MS centers, but I had to. At that time, I was not ready to deal with all that was dumped in my lap. Treatment...
I spent the next few days at home and within a week I had seen my new Neurologist and was admitted to a local hospital for a week. I had a spinal tap, more MRI's, a cat scan, plus so many more tests...I was eventually put on IV Solumedrol and upon release from the hospital, I began the Prednisone. Prednisone....that is a whole different story...for a different time!
Copaxone...
I began Copaxone in August of 1999 and it lasted about two months. It SUCKED. The shot everyday was annoying & the injection site issues I had were worse than the damn disease. Against everyone's advice, I stopped taking it.
Avonex...
In December 1999 I began Avonex. I did very well on it for the most part. The side effects were annoying at best, but tolerable in the beginning. My mom gave me the injection each week and that worked very well for me.
Pregnancy...
In September of 2000 I became pregnant and discontinued the Avonex. I did amazingly well while pregnant and for about six months post delivery. When it was time to resume a medication, I went back on Avonex for about three months and the side effects were the same, but not as tolerable for me. I had a baby now and it was not working with me having that entire day of flu like symptoms...so I stopped taking it.

I was delusional in thinking that since I had done "so well" while pregnant, that overall good feeling would just continue for the rest of my life....REALITY CHECK for Dawn...after about two months off any medication I had an exacerbation...so reluctantly I went back on Copaxone. I chose Copaxone because of the new autoject option. So far Im doing ok on it, despite some nasty site reactions called Lipoatrophy. This is hollowed out areas or dents around the injection site areas due to loss of subcutaneous fat, caused by the use of Copaxone. I will be honest ~ injecting daily sucks ~ I HATE it...its a struggle to do the shot each day ~ I do it but it pisses me off because if Im not hitting a blood vessel then Im causing a huge bruise...it really sucks....however I guess it beats having flu like symptoms for 24 hours, like I did with Avonex.