After the storm

I went back to work feeling awful after my diagnosis, and was in horrible pain. I love working, and I think most MS'er's do because it makes them feel independent and useful. At the time, I worked for 5 attorneys, all of whom loved me like a daughter.

It was early July, and I was originally sent to a neurologist who was as old as Christ (I swore I saw a younger version of him in the picture of the last supper). The man had no compassion for my pain. I was so angry. Angry for being stuck with this disease, angry for being 40 and getting it as my b-day gift, and angry because he refused to help me with my pain. I cried so hard, right there in the office and asked for my records. He was surprised. I was definitely leaving this ghost in the dirt; he was not doing a damn thing other than talking to fill the air. What really put me over the top was when he asked me, "What can I do for you?" when he walked in the office.

Now I had waited 4 months in pain to see this classmate of Christ's and he had the gall to ask, what can I do for you? So needless to say, we got off on the wrong foot because my mouth opened and a string of obscenities came flowing out so quickly as far as I know they are still hanging in the air over his office. Then, he did the "physical test" and said I was in great physical shape. What was he, a doctor from Bonanza? That was it. I got my records, crying hysterically, called the office and told Hugh I was not coming in. I was just too upset and in pain. "Not to be selfish,", he said, "but don't you think if you came in and worked it would help get your mind off things and give the powers that be a chance to work this out for you?" It made sense, so I went in.

I cried most of the day from the pain. They cried a little, too, when they saw what I was going through, but Hugh was right; the largest gift I ever got was from one of them when he came to my desk that day and told me he knew the top epilepsy doctor in the country and could get me a referral through him to the two top neurologists. I was elated. He gave me this man's number and I was in like Flynn. I got to see the best. If I had stayed home, I never may have had that chance.


Since I am a paralegal, I prepared a myriad of questions hoping to get them all in the one hour. They sat me in his office and he came in. He was young (but the first guy was classmates with Christ he was so old). I smiled and said, "you are so young!" Then laughed and told me I looked as if I were surprised. he told me to sit on the table and take off my shoes and socks. he then gave me a physical ambulatory test. He did this by having me first follow his pen with my eyes. He then took a safety pin and asked me if I felt it on various areas of my arms and legs, face hands and feet. All the while I was rattling off questions. Will the stiffness go away? The pins and needles? Can I get meds to ease the pain? can I start on Avonex or something??? All the while I was pushing each arm and leg against his arms, telling him when the buzzing stopped from his fork tuner on my hand, walking on foot in front of the other back and forth, closing my eyes while standing and touching each forefinger to my nose.

And so it went. I kept on with the questions as he pulled out my MRI. He said I had 12 spots on my brain. He then looked at the spine MRI's. I finally said, as he was mumbling, "Could you please tell me where these spots are by touching the area on my head and spine?" So he showed me, one by one, and I asked what each area controlled. When he showed me on my spine I told him those were the areas that most bothered me. We then sat down. He asked about bowel movements and urination. I told him I can't sleep at night because I get up a lot to pee. I then asked him if I could get meds. He gave me something for bladder urgency - and that was it! I was so mad! he did say we would get me on Copaxone ASAP as I was irritable and took lexapro.

All injectables cost 2k per month so he told me it was highly unlikely my insurance would cover it. He had me fill out a form for NORD (National Organization for Rare Disorders), who helps via finances with these things, and I went on my way. Without any pain medication.

Two days later I called back. I asked for another appointment right away as I was in grave pain and was going to kill myself. I could not take it anymore. I was crying hysterically. They set me up that day and I saw the nurse practitioner. What a God-send she was. She set me up with gabapetin for nerve pain, celexa, laxatives to help train my bowel, since I went 7 times per day (she even included the gloves!), and reading material for my family and myself. She also directed me to the office of Colorado Indigent Care Plan and I went there first and filled out all their paperwork so I could get drugs for $5. Then I raced to the pharmacy and when the girl came to the counter and asked if she could help me, I broke down and cried. I cried so hard from the pain and through hysteria told her I was so sorry, I was just in so much pain.

This was the beginning of my journey with feeling better.