I remember my 3rd attack like it was yesterday. I had just finished catering an event in a house that had no air conditioning. I think the temperature was about 95 degrees inside that house. It was a very intense day. I was exhausted when I came home. I slept a lot the next 3 days because of the heat. Then I had another cooking event the following weekend and this time I think this triggered the MS attack. I came home and my feet was ice cold. I just could not warm my feet up. I wore socks, slippers, wrapped my feet in blankets, just could not get my feet warm. 

I went to work the next day and just felt so tired. I was just exhausted, my body hurt, the pins and needles came back and my feet were so cold. Later that afternoon I tried to  hold a pen in my right hand to write and felt this horrible pain go up my arm into my neck and up into my brain like a cramp and electric bolt shooting through my veins. I could not even hold a pen to sign my  name. I went home early and made an appointment with my doctor. I was not able to get in to see him for a couple of days so I called in sick because I could not control my right foot to press on the gas and brake. I felt it was too dangerous to drive and my sister worked on the other side of town and could not drive me. My mom was not allowed to drive because she had a tumor that was wrapped around her carotid artery and her doctor forbade her to drive.

The symptoms got worse. My right leg was almost useless. I had to pull my leg up with my left hand to get up the stairs into the house. I could not even brush my teeth – can you imagine. My mom and sister went out and got me an electric toothbrush so I could manage to brush my teeth using my left hand. I had difficulties with personal hygiene and had to ask my sister to blow dry my hair for me. I felt so useless – it was awful. My poor mom – she had a hard time seeing because the tumor was pressing on her left eye, she struggled to make me a sandwich.

When it was time to go to the doctor, no one was available to drive me to the doctor, I think my sister had computer problems at work and could not take me, friends had plans, so I told my mom she needed to come with me. What a pair we made — I laugh about it now but I did not laugh about it then.

My mom had to drive me, I could not control my right leg and foot. She had a patch on her left eye so it made it difficult for her to drive. We had to drive like 35 – 40 miles an hour all the way to the doctor’s office. Took the back roads so we would not have problems driving. My mom was weaving one way to the other, I had to like hold the steering wheel so that we would not drive off the road. When we got to the doctor’s office, we had to lean on each other to get to the building. What a pair we made. She was leaning on me to see and walk, I was leaning on her because I had no movement in my right leg. I think people were staring at us when we walked into the doctor’s office. What a sight!

My neurologist saw me and said I was having an attack, naturally! He said it would last about 3 weeks and I should start feeling better. Gave me a prescription for Predisone and Zantac. After 3 days of taking the meds I started to feel like my self again. This was September 2002. My neurologist told me that I needed to start taking Avonex injections for my MS. I dreaded this day. He told me I had to, I had no choice. I am sure I had other choices but I was feeling so sick who was I to argue with the doctor.

After this attack, the left side of my body is always cold. It feels like I have ice water running in my veins.  My butt feels like I am sitting on bags of ice. During the winter time it is worse. I manage to get by. I think positive — I’m alive, I’m walking, I don’t need anyone to help me – that is all that matters at this point.

When I was first diagnosed with MS, I had no idea what to expect. I told myself that it was not a big deal and that I would survive anything that came my way. For about 10 years, I had no MS attacks but now that I sit and think about it, I am sure I have had minor flare-ups here and there such as being so tired not being able to do anything that day or when it became really hot outside I could not understand why I felt so weak and drained. I blew these things off as not getting enough rest and not eating right but in reality I was having a flare-up.

After having no major attacks for 10 years other than minor flare-ups I moved back to Michigan, and my whole life changed, new friends, jobs lost, having the huge responsiblity of taking care of a terminally ill parent (extremely stressful situation), I have had three major flare-ups here. These flare-ups have really changed my body and now I have things that affect me that did not happen before such as pain, feeling like I am sitting on bags of ice for long periods of time, razor sharp electric bolts that surge through my face and body when I am laying down sleeping, constant tingling in my spine, legs and feet.  I think the pain is the worst it is such a mind blowing thing. Pain 24 hours a day with no relief.

Now as I approach the age of 45 I wonder if my body will hold up for another 20 years because I am in school full time pursuing a Bachelor of Science degree in Health care Administration which I hope to apply this to help people with MS especially deaf and hard of hearing. I am scared because I will not be able to do what I want because of my MS. I have doubts and I still wonder. I am sure there are others out there that feel the same way I do.

Then….. I start back into school reading chapters and answering questions and I become inspired to go and conqueor the world. I shall not let this fear of MS scare me into hiding and not living my life to the fullest.

Well, I don’t know about all of you, but I have had my share of Dr. Idiots! I have had many doctors so far in relation to my MS. One doctor that I had in Florida had MS himself. He was a non-believer in medication for MS called  inter-feron injections. He said “it doesn’t cure MS, why take it”. I thought that it was a strange comment to say because injections can help prolong the progression of MS. Some people do not believe in injections and are more onto homepathy treatments.

My current neurologist now I call him Dr. Idiot! because he is an idiot. He has no compassion for anything I have to say. When I was diagnosed with Type II diabetes – oh great! another automimmune disease I have to deal with.  He simply laughed and told me I was fat and and I needed to lose weight and that I would be fine. Can you imagine the shame I felt when I left his office. I was so ashamed of myself because I was called fat by Dr. Idiot.

One time I went into his office because I was having a really bad MS attack and I had to wait a good 15 to 20 minutes to see him. I was in excruciating pain – the pins and needles and this time buzzing in my ear. He came into the office made me do finger movements, touch my nose, walk back and forth. I complained of buzzing in my right ear – freaked me out I thought I was going to be deaf in that ear. He said oh by the way, you are having an attack. YA THINK? No! Really?

He decided I needed to be put on intravenous medi-soluable which is a form of steriods. Oh my gosh! What a huge trip to be on these. Talk about wanting to crawl out of your skin. This treatment made my sugars go up to 290, normal should be 90. Had to go to the emergency room. What a pain in the neck! I was crabby, snapped at everyone for 5 days while I was on this treatment. I do not know if I will ever do this type of treatment again.

Gotta find a new doctor soon, he is really a pain and an idiot!

I have not had an attack for almost ten years until I moved back to Michigan from living in Florida for almost 18 years. My attack happened in November 2001. This was the first time I actually experienced the word P-A-I-N. I felt like I swallowed a box of pins and the pins were stabbing me all over inside my body. I could not take a shower or do anything that caused a lot of movement because the pain was just unbelievable. I did not have a job yet and so I did not have health insurance. I went to a neurologist in Farmington MI and paid out of pocket for her to tell me that I was having an MS attack. She told there was nothing she could do for me just to wait it out. Gee! I spent $195.00 for 15 minutes of the doctor making me touch my nose and walk in a straight line to tell me that I am having an MS attack and there is no relief for this kind of pain.

I went home and suffered in silence. My mom did not understand why I was quiet and did not say much. I tried to explain it to her but she did not understand. It was just easier to keep quiet and hope that the attack will be over soon.

My attack lasted almost 1 month. I realized that today thinking about my episode this was the beginning stages of having this kind of pain every time the weather changes and my skin starts to hurt. Sometimes it feels like pins stabbing me other times it feels like when you have sat on your foot for awhile and it has fallen asleep. Even though the fall season is beautiful here with the leaves changing colors and the air becomes crisp – I dread the season changes because I know that I will be in pain for the next six to seven months.

But I shall overcome this! One day I will be able to live pain free.

  Some days I can walk fine and my legs are not bothering me, I am not tired and I am having a good day, but I still park in the handicap parking zone. It is interesting to watch all the people’s faces when I pull up into a handicap parking spot and get out of my car and walk towards the store. What is funny is that they don’t know I can read lips. I can understand every single word they are saying. I have had people cuss at me, call me names, say nasty swear words, give me dirty looks and I have even had old people follow me into the store and say “honey, you are parking in a handicap spot, you should move your car so a person that does have a handicap can park there because you don’t look like you have a disability”. What a lot of nerve!  It takes a lot of strength for me not to slap and push people down when they tell me this. I understand that people want to protect the handicap spots, but I don’t feel I owe anyone an explaination as to why I am parking in a handicap zone. It is even funnier when old people pull right up next to me and give me nasy looks because I have parked in their handicap spot – oh my!

First of all, my doctor would not sign the handicap permit application if she did not think I needed it. Second of all, America butt out, I have a right to park in the handicap zone – I have MS!

What a great day it was today! We all met at a bookstore in Okemos MI called Schuler’s. Great place to have a meeting and lunch.

First Meeting Photo

Myra, myself (Pam) and Lesa. Myra has had MS since Summer 2002, I have had MS since 1991 and Lesa has had MS since 1988. We have all had some same symptoms and some symptoms that were different. It was great to share our stories with each other.

Both Lesa and Myra are currently not taking any type of medications. They both do natural medicines and therapy. I was on Avonex injections for the last few years but currently am not on any medication treatments. We talked about different foods that affect our bodies. Myra cannot eat anything that has sugar because it makes her very dizzy. Lesa suffers from muscle spasms and I suggested that she try to include foods that have a high potassium content. This might help ease up on the muscle spasms. I am just basically continuing with what I have been doing eating a low fat diet and not alot of meat.

Lesa cannot drive so her friend Lori Baar brought her. Lori Baar will contact Deaf CAN to put our group to advertise and see if we get more people to participate.

Our next meeting will be September 13 on Saturday @ 11:30 at Lori Baar’s home. This will be a good meeting. I am hoping Katie will be able to join us and share her story with all of us.

I think that it is hard for me sometimes, when people see me and think that I am fine and do not realize that the problems are inside my body. It is very frustraing to have to explain myself to people — like–  today I am in a lot of pain. My skin hurts. My skin feels like I have thousands of pins and needles attacking the inside of my abdomen amd back area and my legs and feet are constantly tingling all day. Sometimes I get these electric bolts that shoot across my face or my leg or from my left ear to the middle of my face. These things change my mood. It is hard not to take my moodiness on others.

I meet people and they say I thought you have MS? You look fine to me! I have also had people that I have known tell others that I use my MS as an excuse for my behavior or the way I am feeling. Interesting comment since those people really have no clue to what having MS is like. I want to scream at them and say do you know what it is like not to be able to brush your teeth because your right arm will not cooperate with your mouth and the toothbrush? Do you have any idea that sometimes you have to depend on someone to help make you a sandwich because your right side is not functioning at all?

So now when people tell me I look fine, instead of getting upset and going through all the feelings of despair of having to explain myself, now I raise my arms up in joyful glee saying “YES!” I look fine because everything is working today. My arms, legs, body is all functioning A-OK! That is a good thing. I am having a great day!