My Story-Part 4-What I've Learned

It's now been almost 18 years, and after talking over with family and doctors, I am pretty sure I've had it since high school.  It hasn't been an easy road, many hills to climb, many lessons to learn.  I'm thankful for Rick and my children, Jessica and Taylor, who've had to learn with me.  They didn't give up on me, when they could have. I love you and thank you.

After I left Dr. Amp, I asked around for a good neurologist.  I was tired of the run around and not getting the full picture. I was introduced to Dr. Blade. From the first visit, he answered all my questions.  He has been my doctor since January 1999 and is always there at a moments notice.  His office gets me in within a day or two. He's up on the latest news for MS and what would be best for me.  He tells me to do things that help make me feel good-do it (within reason), i.e. yoga, essential oils, alternative medicines, chiropractic care, acupuncture.

He hasn't been the only good doctor.  And that's the first thing I'm adding to my list of what I've learned.

1:  Find doctors you can trust!!  Do not be afraid to change your doctor.

This goes for anyone who needs care.  If you can't talk to your doctors about what's wrong with you, who can you talk too?  I joke with mine; I know about their families and they know about mine.  Now, I don't waste their time, but I do feel comfortable with the care they give and I trust their opinion. AND if I feel anyone if using me as a Guinea Pig, I'm out of there!

2:  Be empathetic. It's showing insight to what others feel or are suffering themselves. 

I've mentioned in past postings how I used to be always on the go and rushing from Point A to Point B, mowing down anyone in my way.  Now, I am one of those people who are often mowed down by other thoughtless people who are in too much of a hurry to do their thing.  

3:  Learn to say NO!  You only have so much energy and so much time.  Don't feel guilty.  Be honest with yourself and with others.   

I noticed when I first started doing this, I felt really bad.  I was one anyone could count on to call on.  I wanted to be the one reliable person.  But I just couldn't do it.  I found it was easier to say no and not stress out myself or my family trying to complete the impossible, than to fail and have to apologize and disappoint someone.  

4:  Everything takes longer.      

I started noticing this years ago with my long, thick hair.  Straightening it would take over an hour, and the curling iron often would be too heavy to lift.  A normal 45-minute morning routine (shower, shave, dress, blow-dry and straighten hair and slap make on) was now taking over twice as long. Even with skipping some of that.  I'd often get out of the shower, exhausted, and have to lie on the bed, resting for a half hour before I could even get dressed.  Not that Rick was complaining about that part-helpless, naked wife.   haha 

Changes had to be made-shorter hair; no more straightening and back to the natural curl and Medusa-look in the mornings; fewer showers during the week (did I really need one everyday?) and when I do take one, minimize actives for the day.   Keeping a calendar and making sure my activities were done in the mornings when I've energy was a great help. I no longer cram my days full. I can't multitask, and since it takes me two to three times longer to get everything done, I schedule for that.  My life is still full, but I try to make it pleasantly full, instead of exhaustively full. 

5:  Pain is a given.                                                                                                                                                             

There will be days with no pain, so be glad when they happen and rejoice.  Other than that, do best you can. Don't wallow in misery.  No one wants to see it or hear it.  I have learned that long ago.

My hands never recovered.  By the end of the day, they are tingling and burning something fierce.  Too much activity or the weather can affect the sensation.  My toes joined the parade about six years ago, although not as bad.  Sometimes it is a grand jolly affair.

6:  Loss comes.     

There are many things we've lost due to my MS.  My children had to grow up faster than most children have had to; my husband had to take on a roll of caregiver; for me, I feel I have robbed my family of everything I could have been to them.

Even after all these years, I still grieve.  Just this past Christmas season, I was hit out of the blue by the memory of one of my losses.  I couldn't make it through a church service without mourning bitterly.  But, the grief soon went away and was enjoying the Holiday Spirit again. The saddness happens like that-coming and going when it's least expected.

7:   New things gained.  Who would have thought I'd have gained anything because of a chronic illness.  Certainly not me.

My husband and I have grown closer together.  There are things we've had to share and endure not every couple gets to.  My children have learned marketable skills that have helped them in the job force.  Many teachers and employers have complimented them on their hard work skills and etiquette. I received new knowledge and education; made new friends; visited new horizons; and all because I have MS.  I'd have never done any of these if I hadn't been diagnosed with this incurable disease.

8:  People will judge.  We all do to an extent.  There's nothing we can do about it.  Just smile and know  they don't know you're situation and move on.

I used to try to hide my illness from people, but now I don't care.  They can say what they like and lump it-try to live in my shoes for a day or two and see how they like it.  When little kids see my disability, point, and ask questions, I don't shun them or try to ignore their embarrassed parents' desperate hushing efforts.  I turn to the child and explain what is wrong with me. I use humor, get the child laughing.  Most times the parent is grateful.  This dispels fear, aids awareness, and encourages conversation.  I've found this has helped everyone involved.

9:  Do what you can do.  When you can do no more, then stop.                                                                                                                                                       

I have a great saying I TRY to follow from my favorite cleaning website, Flylady:  You can do anything in 15 minutes. I TRY to stick to (not that I always do it) this motto.  I am getting much better at it, but I must say, I've learned this lesson the hard way. 

There are many more things I could add to this list, but I chose the most important.  I can't say I do all of them 100% all of the time.  That would mean I've learned PERFECTION and PATIENCE during these eighteen years.  And Rick would tell you I was lying.  But then, all of us slip now and then.  It's what gives us room to grow and make improvement.

                    ***Names have been change to protect the innocent and not-so-innocent.***

My Story-Part 3

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.

MS Story-Part 2

So here I was with a prescription to go to another doctor and still no closer to finding out the cause the headaches or shaking.  The new year had started and my shaking seem to have subsided a little bit.  My headaches were all but gone so I figured it was Christmas stress and all was good.  I put off calling the doctor, my business was picking up, and I was busy with kids.  Besides, Rick didn't have insurance with his work and we really couldn't afford all these visits.  (Excuses, excuses, excuses)

January came and went.  February began, and I noticed my vision started doing funny things.  I'd see what looked like a rain drop out of the side of my eye.  I would turn my head or blink and it'd be gone. Hmm... Strange.  When I'd look out our big picture window of our apartment, it would be several water spots. Dang, filthy window!  Winter was messing things up. I scrubbed the window inside and out. The spots came and went.  I blamed the kids and their fingerprints. When I was driving,  I thought it was my glasses or the windshield. I washed both.

This scared me and I finally decided to call the neurologist and make an appointment. Surely, a visit with him couldn't cost that much.  It was a good thing I called when I did; he was booked out into March.

In March, Rick got a new job and with it health insurance.  I would be covered for my appointment with the neurologist in a few weeks.   Even this first appointment was going to cost us a pretty penny.

I remember walking into his office that first early spring day: calming browns and tans; soft seats with large fake trees in the corners of the room, tables here and there with reading materials; and large rectangle, floor-length windows that let in the sunlight.  The reception desk was directly across from the door and the elderly receptionist smiled brightly, "You must be Brenda."

The few patients in there looked up at me and went back to their reading.  I tripped  over my feet and mumbled a yes as I went up to the open desk.  The grey-haired, happy-camper rattled off everything she would need, gave me five forms to be filled out in triplicate, and waved her bejeweled-hand and telling me to be seated anywhere. I would be called back shortly.

This was to be the first of many trips to doctors' offices where I would have to fill out many, many forms asking me everything from what my grandparents' health was to what I am allergic to to what my health history is to you name it.  The forms give me about one inch to fill everything out on and the doctor's office gives me about 10 minutes to do it in. At this particular appointment, I was able to do it in about 5 minutes and fit it in the space given.  Now, it'd take me about 30 minutes, and there is NO WAY on God's green earth, I could fit it on ten 1" lines.  I learned many years ago to keep all my medicines, surgeries, hospital visits, health history, allergies, etc., on a computer sheet that's updated frequently.  I run a copy off before each visit and attach it to these forms with the words in the 1" line See Attached Sheet.  Saves time and headache for all involved.

When I was finally called back to see Dr. So & So, I went through all the embarrassing tests I had to do with Dr. Clinic plus a few more on the extensive list I lined out for you on the previous blog.  He actually used a sharper tool than a toothpick and ran it up the length of my foot.  He also held up a red Sharpie pen and asked me how bright the color was.  In comparison to what?  Really what was he trying to get at?

He stopped and scribbled a bunch of notes down, made a few grumbling noises, left, and a nurse came back in.  She took my vitals.  She left and I was alone, freezing and wondering if I could put my shoes and socks back on. After what seemed an eternity, he came back and told me I'd need to come back in six days for an EEG.  I'd have to be sleep-impaired for this and needed to get up at 2 am the morning of the appointment-no caffeine, no naps the day before, and no chocolate. http://www.mayoclinic.com/health/eeg/MY00296 

The day of the appointment, I was dragging.  I felt like telling Dr. So & So he should try having two active toddlers and be sleep-deprived.  My husband took the day off work and drove me.  It was all I could do to stay awake.

When I got there, I was hooked up to many electrodes and told I could NOT move for the duration of the test, which was about 20 minutes.  And of course, being told that, immediately my nose, my ears or something, started to itch. I tried to use my meditation techniques from pregnancy to keep from moving and scratching the persistent itches.

Just when I thought I was done, the technician came back in and told me they had to run another test.  I decided I would just go to sleep.  I couldn't take it anymore.  But then, I was asked questions and there were flashing lights.  By the time the test was finished, I was exhausted.

It was several days after the EEG when I received a call from the bubbly receptionist. She had made an appointment for me to have an MRI for 10 days out.  Dr. So and So was on vacation and he would like see me mid-April with the results of the MRI.  Would that be OK?  Really?!  What was I suppose to say?  No, get him off of vacation. I want my results now.

Ten days would put us into April.  Time was ticking, and I was no where near a solution.  Nobody told me what I had.  Nobody said what they were looking for.  Technicians, nurses, or the doctor said nothing.  By now every family member was asking if we knew anything.  All we could say was, "No, not yet.  Just more tests. More follow-ups."

April came and so did the MRI. I'd never had one before. I wasn't claustrophobic so that part didn't bother me.  I found it rather curious with all the banging, knocking and rattling. Mid-way through the procedure, I was rolled out of the tube and injected with a blue dye in my veins. All in all, it took a little over an hour of freezing in the sterile tube.  http://www.mayoclinic.com/health/mri/MY00227.

Mid-April arrived and with it my much-awaited appointment.  I went by myself this time.  I sat across from Dr. So & So as he shuffled his notes.

"Well, we can rule out, blah, blah, blah."  I didn't understand any of his terminology.  "But, I have it narrowed down to three things that will need further testing."

I figured out by now pills weren't going to do the trick.  Bummer!

"Yes?"  I was hoping to spur him on.  I didn't want to leave my kids with the babysitter too long.

He must have decided to get it over with because he said quite bluntly, "You either have a brain tumor, Lou Gehrig's Disease, or MS.  We will need to schedule you a lumbar puncture.  That will rule out a few of them."
http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359

He must of seen the look of shock on my face and realized he had been rude.  "Let's hope you have MS.  It isn't always fatal."

Keep digging, Doc.  You're making your hole deeper.

At the beginning of May, I went in for my lumbar puncture. This one I was worried about.  I had to hold perfectly still while the performing doctor inserted this needle deep into my spine.  I was on my stomach the whole time and got to watch the procedure through the monitor.  It was fascinating.
http://www.mayoclinic.com/health/lumbar-puncture/MY00982 

Afterward, the assistant rolled me out on the gurney, still on my stomach, and told me the dressing rooms were full and it'd be a while before I'd get in to change.  'Sit back, relax, and enjoy the atmosphere.'  Right. White, sterile halls with orderlies rushing every-which-way; the intercom dinging now and then calling to this doctor or that; an occasional patient being pushed by for a surgery; freezing air being funneled in from the air vent directly over-headed; and me, left there on my stomach in a gown that was too small and tide in the back.  I had to stay laying down for 24-hours to keep headaches at bay.

I remember it like it was yesterday.  I, also, remember my appointment with Dr. So & So on May 16, 1996. The day before our 6th anniversary.  It was the day everyone I knew, religious or otherwise, had been praying for an answer and a miracle.  I was just praying not to die.  I had two small children I didn't want to leave behind.

He looked at me and smiled.  "Great news!  You have MS."

OK...I wasn't going to die.  But my aunt has MS and to me this wasn't great news.

"There are two kinds (at this time, that's what the grouping was)--Relapsing and Remitting and Progressive.  So what do you think your symptoms have been?  Getting worse steadily or getting better?"

Now, you should know, this doctor really didn't know much about MS other than the basic definition. I knew nothing of MS other than my aunt had it and she wasn't doing well.  I also knew I had a few symptoms and to me they seemed to be getting worse and lasting forever.  That is what I told him.

"I guess you have Progressive.  Which means you'll just continue to get worse and worse until you're paralyzed or die.  So sorry. "

I was stunned.  My husband and two beautiful children were out in the lobby waiting to leave for our long trip to Great Falls, MT, and here I was with the horrible news I had to break Rick.

"I can't help you any further.  I recommend you go to the University Hospital where they have a great MS Clinic.  Prof. Garden. can take care of you.  He is fantastic."

He gave me the card for the clinic at the university and I stumbled out to the lobby.  Rick took one look at me and shooed the kids out to the waiting van.  I whispered a small explanation to him as I buckled myself into my seat.

The ten-hour ride to my parents' house in Montana was the longest ride of my life.  I cried.  I was angry.  I was scared.  I was mad at God. I wondered what I did to make Him made at me.  I kept thinking of all the things I had left to do.  Somewhere along the way, Rick called my parents and gave them the news.  He quietly told me my aunt would be there to help me with any information on MS I wanted.  It was at this point I quit thinking about myself and got angry again. I went into a cold, icy silence.

How dare she swoop in on my misery and try to become my friend?!
                                                                  *     *     *

                                                             (to      be    continued)

My Story

Last week, I've had two different people ask me to share my MS experience with them.  I've decided to finally put it down for everyone to see.  I figured, if you want, you can share it with whomever you want and maybe that person can benefit (or not) from what is taken from this.

People have asked how I knew when to go in to get checked for MS.  I didn't.  Pure and simple. I thought I was stressed out from being a mother of two toddlers--age three and a half and one.

I knew what symptoms were showing  up in early fall of 1995.  My right hand was shaking uncontrollably.  I was afraid to hold a glass or cup of anything in case I dropped it.  My big vice back then was a big 44 oz. mug of soda, and it was a killer to hold, along with pushing the stroller my one-year old was still in.  He refused to think he could walk on his own two legs at this moment in time.

I remember the look that passed between my in-laws when I laughed and blamed it on the heat of summer and the stress of the kids. I meant to ask them what "the look" meant, but  we all got caught up in talking about how great Disneyland had been and the incident was forgotten.

Migraines showed up shortly after that--devastating, debilitating ones.  I would lay down with the lights off and wish to die.  My children would think it was fun when I'd let them watch movies all day or lay in bed with them and let them read books.  They would fall asleep beside me and I would have the peace my exploding head needed.

Then, about Christmas time, both my in-laws and husband convinced me to go see a doctor.  I was working as a Pampered Chef Director and having to either reschedule appointments due to these headaches or was driving through Salt Lake City rush hour traffic with them.  Not a safe thing to do.  And I could no longer convince them or me that the shaking or headaches was due to motherhood-stress.

I have often wondered if my in-laws had talked to Rick about MS.  I didn't know what was wrong with me. I had an aunt with MS-my dad's sister.  I knew nothing about it at all.  So this was the farthest thing from my mind. I can't even remember talking about all these problems to my parents before hand.

I went to the doctor's office with full hope expecting to be given a prescription for my headaches and something for the tremors and be sent on my merry way.  You know, the "Take two pills and call me in the morning" type of thing.  But that wasn't to be.

My appointment was three days after Christmas, if I remember right.  We didn't have a normal doctor so I went to a clinic where you wait for the next available doctor.  I sat for what seemed like 90-minutes for my scheduled 3 pm appointment (that's when Rick was able to get off work so I could go).  After I was grilled by the doctor for not being seen by any medical person since I'd had Taylor, he got down to the business at hand.  He listened to my symptoms, asked me some questions and did a bunch of neurological tests.

I'm going to share this with you since I had to then; and have had to since; and will always have to do these tests:

• I followed his finger with my eyes, without moving my head, has he went left, right, up, down, diagonal, in, out.
• I was told to take my index finger, touch his index finger and bring it back and touch my nose. Repeat it several times.  Now close my eyes.  Try now.  Switch hands.
• Skim one heel against the shin of the other leg. Switch.
• I had to do odd facial expressions-sticking out my tongue, raising my eyebrows, or puffing cheeks.
• I had to have my hands, elbow, feet, ears, knees, arms, legs, etc., checked for reflexes and pricked with toothpicks to test for nerve lost.
• I also listened to a tuning fork or snapping fingers to have my hearing tested.
• I've walked in a straight line-heel-to-toe, on toes only, and, then, heels only.
• I had to balance with my eyes closed and heel pressed together.

After I did what he wanted to and feeling quite ridiculous, he left the room.  I just remember him leaving and thinking it was getting late and I needed to get home; it was getting dark out.  He came back and had a prescription paper in his hand. I was thinking "Yes! I can just make it to the pharmacy and get out of here."

"Mrs.Segeberg."

Total silence.  I could hear the buzzing coming from the lights and the traffic picking up from outside the clinic.  Must be getting close to 5 pm.

"Yeessss."  I was trying to get him to move this on.  I wanted to get out of here.  Give me the dang medicine so I could leave.

"I really can't help you here at the clinic.   I am not really sure what you have for sure.  I have written you a name of a really good doctor, a neurologist.  Dr. So&So at such and such practice over by the mall.  He is better equipped at helping with these issues.  We are just a clinic.  He can help you with your headaches."

He handed me my 'prescription' note and left, telling me to check with the receptionist on the way out.  I was stunned.  No pill.  No fix.  I had to go somewhere else.  I came here to get relief and I was pawned off.  It took me about 30-seconds for the shock to turn into anger.  How dare he pawn me off?!  What kind of clinic and Mickey Mouse place is this anyway?  I wanted something for these stinking headaches.  At least, he could have done was given me something.

I went to the receptionist and paid my bill.  When she asked how things were, I told her. Believe me, I told her. But what could a poor receptionist do?
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                                                               (To Be Continued)