As I look back, reviewing the long drive to Great Falls, Montana, and think about what I put my husband through, I'm embarrassed for my actions. I know at the time they were normal. Many go through that. And other well-meaning spouses or family members have rushed to me to intervene with their beloved who has been just diagnosed with this devastating disease and offer advice or comfort and let her (or him) know that it'll be okay and all will turn out well.
"Brenda, you've been there. You can help her." And this is why I DO NOT run to her. I wait until that person is ready.
I send a card of comfort with a note to let her know I am there if she needs me, but I do not rush in. And I tell the well-meaning family this--Please do not force her. Let her come to terms on her own. Support her; love her.
I remember pulling into my parents' driveway, relieved my aunt hadn't made it to the house yet. I rushed into the house, shoving past my mother's out-stretched arms and ran into the bathroom slamming the door, locking it behind me. I stayed there for eight, long hours while Rick dealt with the kids; my aunt arrived and left; my mother begged and pleaded at the door that my aunt had driven for over an hour to see me; and my dad threaten to break the door down if I didn't come out to dinner. I emerged when everyone was down for the night and crawled into bed next to Rick, cold and afraid.
Everyone I knew was sympathetic to my diagnosis but always speaking in hushed tones like I was going to die or something. It was starting to make me mad. Really, people! I am not dying!
When I returned to UT, I went to see Prof. Garden at the University Hospital. I remember the day I went to the MS Clinic at the hospital. It was a huge place. I walked through a long, glass hall, the windows running from floor to ceiling, and plants lining the whole length of the corridor. It was June, and the sun was shining through with an intensity which was blinding me as I traipsed down to the end.
As I walked in the office, not sure of what I was doing, I was surprised at the number of people waiting to be seen. I saw all the doctors listed on the clinic wall, all of them specializing in MS. Wow! I didn't even know MS was this common. I sat down and waited. And waited. And waited.
When I finally got to go back, I saw the nurse and went though all the tests I had been going through a million times before. I was a pro by this time. I joked around with the nurse and asked if I had passed all my tests. She looked at me and just smiled. She took the copies of my MRI films I had brought and disappeared.
**Let me break in here and say a bit about brain MRI's. They're the coolest things to look at. You can see your eyeballs floating around in your brain matter. It's kind of like a horror-flick. My son thought it was awesome to look at. My daughter thought it gross. With MS, there is white matter on the brain also. This tells how much the disease is progressing. I always try to take a sneak peek at mine before I get to the doctor's office to see if I can judge how my MS is going.
http://img.medscape.com/fullsize/migrated/507/375/h507375.fig2.jpg
I didn't used to keep my films, but about the third MRI I had, the hospital lost them. I was upset about it; really upset when they charged my insurance for a new set. Hey, they lost them! Why should I pay for new ones? After that, the doctor told me 'You are the one to pay for them (through your insurance, of course) so you need to keep them.' So, I would always check them out of the hospital and take them home-never to return them. Ever. They are not the property of the hospital; I paid for them. They are my property. I have ever one of my files from my MRI's from Day #1.
Prof. Garden came back to see me with my MRI files and looked at me. "So, you were just diagnosed?"
"Yes."
"What did Dr. So & So tell you about it?"
"He thinks I might have progressive MS"
Prof. Garden asked me several questions here and said, "Nope. You have Relapsing/Remitting. Do you know anything about MS or anyone that has MS?"
Now we're getting somewhere. I was relieved. This guy really does know his stuff. I started to lighten up. "My aunt has MS..."
"Great! Then you know all about it. I will see you in six months. Make your appointment out at the front desk."
With that, he left, and the nurse came back. She told me unless I was having any other issues, come back early Dec. She gave me a big plastic bag filled with brochures on MS and told me there was a Newly Diagnosed Seminar coming up I should attend. I was left to find my way out.
That visit left me with more questions than ever. The brochures helped a bit, but I needed to talk to someone specific. I decided to go to the seminar. There were over 50 people in attendance. Prof. Garden's colleague, Dr. Meadow was speaking. He was a great advocate for starting with disease-modifying drugs (DMD), which is supposed to aid in slowing down the course of the disease. It's very expensive and some insurances don't always cover it, but he was all for it. I left there with some hope and more questions for my visit in Dec.
We moved about an hour south of our home in Salt Lake City, Utah, that October, and to my list of questions to Prof. Garden, I added was a recommendation for a good neurologist in this an area. Roads can get bad here, and I didn't want to have to drive--especially with my eyes always going in and out.
My visit in December went about the same as the first-quick and not much information on the MS side. He didn't recommend starting a drug therapy at this time since I was doing so well with my MS. As to doctors in my area, his counterparts were in a clinic about 15 minutes from apartment. Ask for Dr. Vicky Amp. I was in and out of his office in the time it'd take me to get to this Dr. Amp and with nothing I couldn't have learned for myself on the Internet. What a waste of $20 in gas and four hours of my afternoon!
In March, I made an appointment with Dr. Amp. I wanted to see if she would start me on the disease-modifying drugs. Everything I had read about it said they were the key to keeping your MS symptoms at bay and the course of the disease from progressing at a rapid rate. So far, I'd had it easy. My shaking had stopped and my eye sight was back to full strength. It was almost like nothing was wrong. I had retired from my Pampered Chef job to help with my health, but I knew there was a sleeping giant somewhere inside.
Rick and I went to her office and waited for 3 hours to be seen. We were getting ready to leave when the receptionist called my name and escorted us back to a small room overlooking the tall mountains to the east. There, we continued to wait for another 45 minutes. Rick, who is usually, mild-mannered, was getting irritated. He'd had to call into work and tell them he wasn't coming back into work. I was sitting in there ranting under my breath how rude it is to make the patient be on time, when the doctor can't even follow the rules.
She finally waltzes in with some lame apology about why she was late, sat down, and talked to us about MS. Her saving grace was she actually
talked to us about MS. When I got to the DMD, she told me they are very expensive and my insurance probably won't cover it. "You are doing great, so I wouldn't worry about it."
After that, she rushed us off.
**Just a note--I found out about a year later that at this time, my insurance would've paid it 100%.
I remember seeing her sometime in May time for a brief stint of what she thought was a minor relapse, and she prescribe Solu-medrol. This is a high dose steroid give through IV to help with inflammation. There are natural steroids in the body, and normally, the body absorbs these well. On this particular incident, I had an allergic reaction to something during the infusion. The nurse, my allergist, and myself believe it was the latex tubing used at this time. Dr. Amp thinks it was me being melodramatic over getting an IV and refused to give me any further IV's for anything-only pills.
For almost two years, I did great. I learned little from doctors. I tried going to a support group, only to quit after several meetings. Everyone there was too busy telling me how bad their life was, what their scum spouse did to them, or what I had to look forward to in "x" amount of years. Whenever I tried to put in a positive word, I would get something like, "You're new to this, just you wait and see." I finally told Rick I wasn't going to go anymore. I couldn't take the negative vibes and attitudes.
I read everything I could get my hands on about MS. I went to free meetings the National MS Society offered. I picked up all their pamphlets and almost memorized them. AND I listened to people's well-meaning, but often, unwanted and useless advice. I went to counseling for depression, which had become worse thanks to MS. This wonderful doctor helped me cope with me and my illness.
http://www.nationalmssociety.org/index.aspx
Then, on Halloween night, 1998, while Trick-or-Treating with two other couples and all our kids, my first official relapse started.
The other two couples were dressed up like Teletubbies and taking all the older children to the doors, while Rick and I watched all the younger ones in the strollers on the sidewalk edges (Rick doesn't usually dress up, and he and I definitely didn't do Teletubbies. Good thing there were only four of those weird creatures). I remember standing there thinking my feet were falling asleep. I would stand on one foot, and then, the other and stamp really hard on them both trying to get the tingling sensation to leave. I remember occasionally retying my shoes, thinking I had tied my laces too tight.
http://uncyclopedia.wikia.com/wiki/Teletubbies
The next morning, I awoke to my body from the neck down, tingling and burning. Anything touching it hurt. The best way I've found to describe this is for you to think about a limb that has fallen asleep to the point of where it's almost dead weight. You've a strong tingling sensation. The moment feeling starts to come into your limb and you move it, you get a tingling, burning, shocking, electrical sensation all at the same time. Excruciating. That's what I felt from the neck down for 30-straight days.
Rick had to leave the country for work. He tried to put a call into Dr. Amp. "She is busy. Leave a message. She will call back." She hadn't called when he had to go.
My sister came down from Idaho to take care of me and the kids. She called Dr. Amp. No reply. The nurse's assistant called back after 10 days with some MS medication to help with nerve pain. All it did for me was make me gain 40 pounds in 2 months.
During that 30 days of pain, I could barely get out of bed. I couldn't stand for anyone to touch me. My children were afraid I was going to die. There were times I'd have them come and lie in bed with me and I'd read to them. They would try to cuddle with me, since that is what we would do when we read. I'd wince and push them away. I tried to explain, but to a five and three year old, it's hard. They just see Mommy hurting and not know why.
Dr. Amp never called me back. I finally got so mad I called and told the receptionist I need to talk to to the doctor. I was told Dr. Amp was with a patient and please hold. I was on hold for 20 minutes, and when the receptionist came back, I was told Dr. Amp had left for the day.
"But she has written you out another prescription for pain."
I flew off the handle. "What?!!! You can take her prescription and shove it! And you can tell
Vicky I will not be coming back EVER! I will tell everyone I know how bad this place is making you wait forever just to get a prescription! She will never get a referral from me. EVERYONE I KNOW WILL KNOW HOW BAD SHE IS!! And trust me. I
know a lot of people."
With that, I slammed the phone down as I heard the receptionist start to say, "Sorry that I ...."
***
I remember the morning I woke up, and I could feel my legs again-no tingling; no burning. I cried. Everything returned to normal sensation except my fingers. They still tingled and burned. In fact, I couldn't feel much of anything with them. It was like having a Band-Aid on each finger and trying to function with life.
I had to teach myself to re-write, re-type, not to burn myself on the stove (there was a lot of burnt flesh those first few months), to re-tie my shoes. Anything using my hands had to be relearned. I found I could no longer play my violin since I couldn't feel the strings beneath my fingers. Turning pages of a book was difficult. And the thing that hurt the most of all, I could no longer feel my children's faces-no soft cheeks, no temperature taking if they had fevers, no brushing hair out of their eyes. The sensation in my fingers was gone.
I still had to find a new doctor and still was weak from recovering from this month-long stay in bed. But I had learned an important lesson.
I had survived.
