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Last week I had my first appointment with a Neurologist at the Oregon Health & Science University since I arrived in Portland almost two months ago.  The first appointment with a new doctor (especially a specialist) is usually the most difficult for me.  Its almost like going on a blind date with someone you’ve never even spoke with over the phone or exchanged emails with.  Yes, he was cute…ha!  But in all seriousness, I think this appointment went pretty well though I think I left with more questions than I had coming in.  I am going to have my second brain and T-spine and first C-spine MRI tomorrow evening to see what’s been going on since January when I had my first MRIs.  I still don’t know how I feel about him yet, but I will meet with him again next week to go over my MRI results.

With MS, it seems like our only choice is a choice of several drugs to take to hopefully slow down the disease progression.  Pharmaceuticals is one of my worst fears.  I don’t even take over the counter medications. I don’t remember the last time I had an aspirin. I usually only take them when I really have to like when I had to take Prednisone last spring for a drug eruption.  It was a pharmaceutical to counteract horrible side effects from another pharmaceutical ironically.

I do my drug research, but it always leave me with an icky taste in my mouth.  Everyone else I know with MS are quick to jump on the drugs and I feel like I’m the only one who pulls away in fear.  I know its a choice, but its one of the most difficult choices I’ve ever had to make.

Photo by: snappED_up

On Saturday night, I think I reached my tipping point. When I’m in a difficult situation large or small, I usually try to cover it over with any band-aid I can find with until I finally snap.  Not the type of snapping  where it would land someone in the hospital and me in jail, but the type of snapping where I feel like I’m at a place of no return. Falling down a deep hole, crying uncontrollably, and not believing the sun will ever rise again.

The Crashing Sun

It started late Saturday night when I was in the upstairs bedroom wrapping up whatever I was doing to get ready for bed. Steve followed me up to converse with me for a few minutes and then headed back downstairs to finish preparing his late night snack.  A few seconds later, I heard him fall down the flight of stairs.  He fell down all twelve stairs down the steep staircase. When I got down to where he was, he was up pacing the kitchen, scared and confused. I was shaking, scared and confused myself.  He wanted some space to process what just happened, so I went back up to the bedroom to cool out and calm down. For about five minutes, I couldn’t stop shaking and I couldn’t move.  Every breath was a challenge. The issue with Multiple Sclerosis is that it makes you hypersensitive to anything, large or small.   Sharp and loud sounds and any kind startles me.  Anything that’s remotely scary puts me in panic mode. Common life stressors wreaks havoc on my body.

I decided to rest a little upstairs when I heard him scream. When he yelled out, it felt like every nerve in my body was connected to an electrical socket. I went downstairs and he could not move.  Apparently he cracked a rib when he fell but had a delayed reaction. He felt something (his rib) move a little.  He could not move, walk, stand, and had to be helped to the sofa. It was late so he just wanted to stay where he was and sleep. I made a covered icepack, got him some pillows and blankets, and made sure he was breathing OK.  I went upstairs to lay down and that’s when I had reached my tipping point.  It was my reaction to what happened with Steve injuring himself and my physical and emotional reaction to it.

Since I was diagnosed in January, I have had every reason in the world to not really face how I’m feeling about my diagnoses.  Work, health problems directly and indirectly related to MS, the pregnancy, going on disability, health insurance issues, moving and so on has distracted me from my emotions. Add to the fact that I’ve been telling myself that ‘other people have it worse than I do’ in an effort to comfort myself has pulled me away from myself. I dont think I’ve ever cried as much as I did that night.  Steve falling was just the straw that broke the camels back.  Though no one knows what their future will bring, having this disease has me more afraid that I have ever been.

Slowly Rising Again

For the next three days, I was his 24/7 nurse.  He had to be helped on and off the sofa where he still has to sleeps at night. We still cant sleep together because we only have a full size bed right now and the movement  from having someone sleeping next to him is too much to handle. Going to the bathroom, showering, eating – every move had to be thought out.  Coughing and sneezing is the worst. He is slowly able to start taking care of himself and by Thursday, we were able to go out together to walk the neighborhood.  I am doing better also.

Though I still have a lot of unanswered questions and questions that are sitting dormant waiting to be asked, I am sitting in my home office watching the sun slowly rise in the east though the dark clouds from last night’s rain.

If I could control the weather, it would be fall or winter all year.    I mean, I wouldn’t want  Minneapolis winter, but I would take our relatively mild west coast winters over summer any day.  The reason?  Heat.  Many of us with Multiple Sclerosis are very heat intolerant so we try to avoid it as much as possible – if possible. How much it affects us, its individual.  It puts us in a state of “pseudoexacerbation”, which is a temporary exacerbation of MS symptoms.

For me, I can go from feeling my very best to complete misery in a manner of minutes just because its a few degrees warmer. When I’m outdoors, my limit is around 75 degrees.  At 80 degrees, I am OK but at that point I need to stay in the shade and not exert too much energy. When its 85, I need to go indoors.  Some people can tolerate more heat, whereas others experience symptoms when its much cooler.  We have been having strange weather patterns in the Bay Area (strange to me) and have had a few very warm days followed by much cooler days.  During the hot days, I barricade myself to the house, try not to go outside for anything other than getting the mail and switch on the air conditioner in the car the second I get inside.  I don’t workout or do much of anything on those days.  I’m just thankful we don’t have humidity in this part of the country.

Some of the symptoms I experience feels very much like an exacerbation though it isn’t.  They are:

• Increased Optic Neuritis (blurred vision) – I would never be able to drive a car without air conditioning.
• Decreased cognitive function – Forget about working.
• Fatigue – Forget about doing anything.
• Tremors
• Increased pens and needles in my feet
• Spastic
• Increased Vertigo

The interesting part is, once I am able to cool off, usually by air conditioning or a cold shower, I can feel better within minutes.  My days are planned around how hot it is and occasionally, appointments or dates are postponed.   I would never be able to live in a traditionally hot or humid climate.  I wont attend a conference or expo in Las Vegas unless its in the late fall or winter among other activities. Its not easy having the weather control your life, but I try to make the best of it. When its too hot to stay home, I would either go to the movies, an indoor mall, the Berkeley Marina, a trip across the bay on the ferry, or a drive up the coast.  When the sun starts to set, that’s when I go out to run errands and get some fresh, outdoor air.

If you are heat intolerant, what do you do to cope? I am always looking for new ideas!

I cannot believe its almost June!

Though it felt like January just began days ago, it also feel like a lifetime has gone by.  I was diagnosed with Multiple Sclerosis on January 9th and life has never been the same since. I remember sitting in the doctor’s office fearfully looking at the MRI slides of my brain. Though parts of it looked like Swiss cheese, I felt great. I thought the worst would be the blurred vision in my left eye and the pens and needles sensation in my feet that I’ve been experiencing for months.

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A few days ago, I was going through my photo archive on my computer and was amazed at what I saw.  I guess I haven’t noticed the physical transformation I made over the past few years that much.  Despite the total change in wardrobe, feeling healthier and lighter on my feet, I haven’t really stopped to smell the roses.

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