Do not underestimate the power of the nurse practitioner!

Dear MS'er's and family members of the same:

As I stated in the blog "after the storm", I saw the nurse practitioner of my neurologist, who was not only super resourceful, she was compassionate and understanding and gave me all sorts of books and materials to supplement my prescriptions. I needed answers and I needed understanding and ways in which to make myself feel better. I also needed empowerment and hope that I could get through this.

She also made sure my application for financial help with the Copaxone was sent in and checked on the status. While it took 3 months and a lot of collecting of information, I got a full grant for the medication with payment of shipping only, which was $15.00 per shipment.

So I left feeling empowered and relieved. I also decided to make more appointments with her and any tests I got I would see my neurologist. So, word up MS'ers, the person to see for results and a first consultation is the neurologist, and for support and new symptoms or medication and resources, see the nurse practitioner!

I will end here, with more posts to come, reminding you that the nurse practitioner is underestimated. They are compassionate, resourceful and are able to give you the medications you need. They will also listen intently when you tell them you are not doing so well on a med and propose alternatives.

I thought I was immortal

What was it with me that I thought I was immortal? I had to really look at my life's view; and it turned out I had Peter pan complex. I always took good care of myself, did my yearly check-ups and ate well. I did smoke - I quit 2 years before my diagnosis. That was my one weakness - ciggys. Then I just quit thinking I smoked for forty years so I should not smoke for the next forty years. I really thought I had it together. Turns out, even I could get a disease.
I always worried and obsessed about my health. I always had this looming feeling that I would end up with something painful, even though I was dealing with MS all my life. As I got older, my brain was unable to compensate and I began to have symptoms in a vacuum.

At 26, my right side went numb. The doctor thought it was stress because I was planning a wedding. I got a second opinion and the second doctor said I had MS, but if I  allowed him to officially diagnose me, I would never get insurance and, more importantly, they had no cure nor did they know much about it. So I left the office with Prozac and the numbness left after a month, and I never experienced it like that until 2008.

The blindness in my right eye in 2003 was diagnosed as a migraine. While I do get severe migraines and have since high school, what I went into the emergency room for was not a migraine, it was optic neuritis.
I was never able to read maps, and as I got older, I was unable to listen attentively and became scattered and was unable to focus.  I began to lose jobs as it looked as if I was not listening on purpose and I got into power struggles with my superiors; something I never had a problem with until I turned 30.

I just rationalized that it was time to get a degree. So at 35 I went to college at an online school to study management, which was the career I was in. I figured if I got a degree in it, I would get better pay and jobs. Unfortunately, I changed careers and  degrees before I could get a better job in that field and I maxed out at 40k a year, but that story will come later.

I can say all of this easily, but it was a long hard road. I worked 12-18 hour shifts and went to school full time. my grades were average, and I wanted them to be better, but I lived in Seattle, the Capitol Hill District, and it was super expensive. I also had and brand new sports car I had to pay for. I was strapped to the car, the downtown apartment and my credit card payments.

I lived in Seattle for 5 years - from 2000 to 2005. The day I left there for Maui was one of the best days of my life. Seattle was dark, wet, cold and there were 3 suicides a year in my apartment complex. I would walk everywhere and see "cleanup vans" and yellow tape; and that smell. Anyway, I got out of there fast.

Before I left I found that I was having bad pain between my shoulder blades. It came and went. I also got numb feet and hands. I never thought anything about it. Just like I never thought twice about the blindness in my right eye; it was diagnosed as a migraine and went away after a few days.

All of the misdiagnoses, the inability to put together these symptoms together, coupled with the brushing off of all of them by myself and doctors made me feel like I was invincible and immortal. The chapter that opened in my life when I left Maui and moved to Denver in 2006 changed that forever.

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.

Good days; bad days

Dear Ms'er's:

This is my first post, although I set this up when I was initially formally diagnosed in 2008. I had one attack before that in New York at the age of 26. The doctor told me I had it but that 1) there was no treatment at the time and 2) I would create a mess of my life with insurance and pre-existing conditions. So I left with a bottle of Prozac and the numbness on my right side eventually disappeared.

I buried that secret deep inside me and did no research whatsoever; so I never knew definitively if I was going to see more of the same. I often got numb feet, tripped easily and went blind in my right eye. I also had horrible burning headaches that would not go away no matter what I did and fatigue that I used tons of caffeine and sugar to stave off. I got vertigo often. Tingling from my neck to feet. Weakness in my right leg. But I knew that if I went to the doctor and asked for a diagnosis, it would change my life forever. Boy, I sure underestimated that!

Then in March of 2008 I got numb on my right side all over again. I had just gotten insurance, so I set up an appointment. However, I forgot about it as it went away and ended up with a physical and a clean bill of health. Then it came back in April. I decided not to go to the doctor as the numbness went away so fast the previous month perhaps it was a virus?

May passed with no numbness. In June I usually visit my friend Johnnie as we have close birthdays and I go to LA. Two days before I was to leave I woke up completely numb on both sides and stiff on my right side. I got in with the doctor right away, and my GP was on vacation, so there was a new fill in GP. He began asking me questions about all the symptoms I had in the past - the burning headaches, blindness, numbness and frequency, and I denied everything. I told him it happened to me once before in my 20's and the doctor gave me Prozac and it went away. This doctor looked me straight in the eye and said "I bet if I do an MRI it will come up consistent with Multiple Sclerosis". And I replied, "Oh no way, that does not run in our family". Then he looked at me, I looked at him, and his eyes just pierced my soul and the realization hit me that the gig is up, I can no longer hide from this disease. I cried while I waited for his orders to get MRI's.

The next day, the day I was to leave to LA for my birthday, I was getting an MRI. I was feeling so uncomfortable - my arm was stiff, my body was numb and I wanted it to go away for my trip. I got the MRI's and three hours later left for LA.

The pain became excruciating. I could barely walk. My body was numb. I could not sleep because of pins and needles all night. My right arm was stiff and the other side came and went. To top it off, it was 113 degrees every day. Johnnie hung in there with a positive outlook. I just wanted some drugs to knock me out until it was over. Johnnie's apartment was small and hot. Eventually I had to ask my brother if I could stay with him at his house ( he lives in LA). I left on a Friday and by Sunday the symptoms had eased. Nothing prepared me for the phone call I got from the doctor on Monday morning, which was also my birthday.

I am a Gemini. I believe everything is changeable and negotiable; even death. My favorite saying was, "this, too, shall pass." This was my freedom from all bad situations, my negotiating point. Until that day, at 9 am. Doctor Park, the one who ordered the MRI's, told me my scans were consistent with MS. He then got me an appointment with a neurologist. At that time, no one was home. I was alone. I remember thinking of all the people who were waiting to hear of my results.

I looked down at the phone and thought to myself, this will not pass. There is no cure. It is not negotiable, nor is it changeable. My entire foundation of my personality, the light in my eyes and the beliefs I used as inspiration for others was gone. I took a moment to breathe that in, and the shock was overwhelming.

I then called my best friend, Erin, who cried like a baby on the phone. I called my dad who cried. "The family will come together for you on this." I told him, "I will never be a lawyer now!" and he replied, "Yes you will, you will be the new Perry Mason!" My mother wanted Doctor Parks' phone number immediately. Was it a diagnosis or consistent with and we need an expert opinion? There is no need to freak out, we need more information. Head stuff (she is a social worker). "Isn't it great you have such a great friend like Erin to help you?" Erin is my best friend and roommate.

I then saw an expert who pointed all the spots out on my brain and spine and officially diagnosed me. We then had a fight because he needed a battery of blood tests to give me any pain meds, and I switched doctors.

The real MS journey began there. It has been so much more difficult than I thought. My fear sometimes becomes the worst part. I read stories about others and I get scared. Will that be me soon? Will I poop the bed? Will I pee my pants? Will I lose my independence? Will my family take care of me, or will I end up in a place where no one cares and I am forgotten? Worse, will I forget everything in my life and become someone with no identity? When I meet a new man, do I tell him he might have to wheel me around in 20 years? Will they all run?

Like everyone with MS, I have gotten medication and I have good days and bad days. On the good days, I don't want to go to bed; I want the day to last forever. On the bad days, it's life as usual with lots of pain.

That's it for tonight. I promised my roommate I would get up early and begin the LSAT study crunch. I will end with this, which my father tells me all the time - look up, it keeps your spirits up.