A shot of reality...

I rushed home from work today because I had an appointment to keep.  The nurse from MS LifeLines was coming to teach me all about my new "disease-modifying" medication that should hopefully "decrease the frequency of clinical exacerbations and delay the accumulation of physical disability." In other words, it should hopefully prevent me from having so many flare ups of my MS symptoms and slow down the progression of this disease.  It's my best chance of trying to live a normal life.

I had literally been sick the ENTIRE day thinking about it and had barely slept a wink the night before.  Needles and me don't mix.  I'm the girl they had to lay down to give shots to growing up so I didn't pass out.  I'm the girl who even now can't look when they take blood.  I'm the girl they still give stickers to or wrap in brightly colored gauze grip tape because they know I'm not brave.  And now I'm the girl who has to take three shots a week for the rest of my life. Thank heavens my hubby was going to be able to stop home in between his visits so HE could learn and give me my first one, cause there was no way in hell I would ever be able to give myself a shot, autoinjector or not.

Except for the fact that the nurse had other plans.  "I would actually like you to give yourself the first shot today." WHAT THE ?!?!?!?!?!  "It will empower you."

We watched a video on the medication and how it was administered.  I don't remember a lot about the video because the only thing I could think was, "um, there is absolutely no way I can do this"  You want me to push a button that I know will shove a needle into me... Nope, not happening".

Next, she pulled out "practice autoinjectors" which didn't have any needles in them.  Truth be told, I was so distracted with my thoughts of how I was going to get out of this that I didn't even take the cap off before pressing it to my skin and trying to click the button.  Both her and the hubby laughed.

It was soon time to actually administer the shot and I looked over to my hubby with an eye pleading "bail me out here" kind of look.  Nope, he wasn't having it either.  (Traitor.)  "You got this, you can do it", he encouraged.  I later told him, "seriously, you had one job... ONE JOB!!!!"

"I have an appointment at 4:30", the hubby told me as I looked over at the clock... 4:14.  Seriously?  Now you are RUSHING me?

I washed my hands thoroughly, unwrapped an alcohol wipe and rubbed it against the inside of my upper arm... I had a minute longer to completely panic while it dried.  (If you try and inject right after wiping it will sting apparently.) Next thing I knew the autoinjector was in my hand, pushed up against my sterilized arm, and the only thing stopping the needle from piercing through my skin was my shaking thumb on the green injector button. After what seemed like a few minutes but was most likely just a few seconds since hubby managed to get out of the house on time, I turned my head away, took a deep breath and clicked down the button.  1-2-3-4-5-6-7-8-9-10, I looked at it to make sure the syringe plunger had gone all the way to the bottom of the housing, then pulled it straight up and out.

Done.  And if I'm honest, I really didn't feel much.  The nurse had me dispose of the injector in a sharps disposal container, our newest piece of home decor, then she handed me a tissue to massage the area for a minute or two.  I still can't believe I actually did it.

Hubby ran off for his appointment almost immediately after kissing me and telling me how proud he was of me, and he even sent me this cute little text a little bit later:

The nurse and I had some 1-on-1 time to chat.  We talked about the medication, how I was feeling physically and emotionally, the people in my life that I am currently getting support from, available support groups, and lots and lots of other things.  She is going to be my nurse for a very long time and I'm glad to say I kind of really like her.

I can also truthfully say that while today felt incredibly overwhelming, it was an particularly important day for me because it was the first day that I couldn't dismiss the reality of what I was feeling and going through. After the nurse had left and I was all alone, I curled up on my bed for a few minutes and thought to myself, "yep, this is real.  I have this disease and I'm going to have to learn what to do and how to manage it.  I'm going to have to learn to be stronger than I've ever been before. But right now, while there is no-one here, I'm just going to let myself cry."

MS=Mighty Strong.

An unexpected gift...

I was caught a little off guard tonight when Dee walked in to the kitchen with an Alex and Ani bag while I was sitting playing cards with Mike and our parents.  It wasn't her carrying the bag that threw me off, because the girl owns like 100 of those bracelets, so to be truthful, I smirked a little when I saw that bag... but this time she actually handed the bag to ME.  I own 0 of those bracelets, or at least I did until tonight.

Dee had told me she was going to City Creek for the evening with a friend to eat at The Garden at the top of the Joseph Smith building because it was an item on her bucket list, but unbeknownst to me, she apparently had another mission down in Salt Lake after she had seen an an email advertisement that had been delivered to her inbox...

As I opened the bag and the box inside I will admit I was a bit confused at first to see a cupcake charm on a silver bracelet in the box, but it only took her 1/2 a millisecond to point out what was on the cards...

It's hard to put in to words the emotions that went through my head at that very moment, but I will tell you it took everything I had in me not to ball like a baby, and it certainly didn't help my emotional state to learn that she had bought herself a matching one too.  I get teary eyed just thinking about it. Thank you my Dee for a gift from the heart.  Love you. <3

Weekend celebration in Park City...

This weekend we decided last minute to take a little road trip to get away from it all and celebrate our 25th wedding anniversary.  Initially we wanted to do something big to celebrate... San Francisco or Hawaii or something, but with everything we have had going on, it's just not the right time to be traveling.  So rather than just stay home we decided to drive a short distance to another part of the state and just have some fun together.  We chose Park City because it was about 10 degrees cooler than most of Utah, and heat not only drains my energy pretty quickly, but it also intensifies the zinging in my neck and spine and can make me very lightheaded.  I was hoping that I could at least spend SOME time outside if it wasn't as hot there.

We did have a lot of fun together.  We always do, but things are definitely different now.  One of the things I struggle with tremendously is feeling an overwhelming guilt that I'm keeping my hubby from doing different stuff.  He is so great.  If I get tired he takes me back to the hotel and we rest for a bit. If it's too hot, he will find somewhere inside to hang out at.  My stomach has been a mess the past few days, so he is very concerned about where we eat and that there is something there that caters to my needs.  I keep waiting for him to just lose it  but his patience with me is unbelievable.

We drove up Friday night and went and had a late dinner at Cafe Rio.  Their salads never make me nauseous or sick after and I love them.  Then we went and walked down Main Street for a bit.  We love people-watching.

Saturday we slept in for a bit then took a drive up to Olympic Park to watch the skiers and snowboarders perform incredible jumps into the Olympic size freestyle pool.  Walking around the museum afterwards gave us a break from the heat.  We had a reservation at Ruth Chris's Steak House that evening for our big celebration dinner.  We had never been to Ruth Chris's before, but our cool realtor had given us a very generous gift card for there, so we figured it was a great time to use it.  We had a lovely dinner.  It was a beautiful atmosphere and delicious food.  Mike had the 22oz Cowboy Ribeye.  I had the lamb chops.  We got the sweet potatoes, mashed potatoes and lobster mac and cheese to share.  They even put rose petals on our table and treated us to dessert, (we chose creme brulee), because we were celebrating our anniversary.  I was VERY careful not to overeat.  (I only had a taste of the sides and about half of my lamb and we shared the dessert).

Everything was perfect until about an hour after when my stomach suddenly felt like there was a helium balloon in it, expanding as far as my stomach would allow without popping.  I've only felt this badly one time before and that was about a week ago when we went to Tonyburger.  I'll spare you the gory details, but 8 hours later there was absolutely nothing left in me and I was finally able to get some sleep.  As horrible as I felt physically, I felt much worse emotionally.  I literally felt like I ruined the entire night.  Bless my hubby for his love and patience.

The next morning Mike was pretty insistent that maybe we should just head home, but there is no way I wanted our weekend ending like that, so I suggested we drive in to Provo River Falls and stop at the Hidden Fairy Forest that one of my co-workers had told me about.  My stomach was doing much better and I only ate toast and a banana for breakfast, so I knew I would be fine.

He was a little reluctant at first, but we ended up having the best day of the weekend.  Erin from work had told me that if we stopped at mile marker 17 on Highway 150, followed the trail and crossed the stream, we would find a hidden fairy forest.  I wasn't sure what to expect, but it was one of the COOLEST things I've ever seen. Hidden back in the forest were HUNDREDS of painted rocks that people had brought in and left.  There were rocks of every size and color and they were scattered for what seemed to go on forever!  We walked around for a good while just looking at the art work and enjoying the quiet together as there were barely any other people there.  The funniest part of this experience was trying to cross the stream together. There was a ton of water flow and some of those rocks were only just poking out of the water... additionally, it was quite the distance to get across the stream. Mike, ever the gentleman, insisted on going first to test the rocks so I could follow in his footsteps.  As we held hands and attempted to cross the stream wobbling and almost falling in at least twenty times, we couldn't stop laughing and giggling.  He also found it pretty amusing that I would make him stop midstream to take pictures while balancing on rocks.

Once we had finished exploring the fairy forest, we drove in a bit further to Provo River Falls.  I absolutely love this place.  It was one of the first places we visited when we came out to Utah to visit in 2001 and we took a family picture on the rocks here.  It is so peaceful and so beautiful... and in my opinion, the most beautiful waterfalls in Utah.

I wasn't able to clamber around on the rocks this time like I have in the past, but I got a lot of satisfaction watching Mike climb up and snapping his picture from the bottom.  I'll definitely have him bring me back for some clambering when it's a bit cooler. :)  We did enjoy sitting and listening to the water and chatting.  Next time we will definitely bring a picnic.  It really was the perfect end to our getaway.

Life is now all about adapting and I'm so grateful for this man who is next to me every step of the way.  His love and support truly make all the difference in the world.  Everything I do to try and make myself stronger I also do for him because I want our next 25 years to be as wonderful as our first 25 years have been and I want to make sure I am doing everything I can to help us live as normal of a life as we can.  Together, we got this. :)

A new medication...

Currently there is no cure for MS, however, there are medicines you can take to stop it from progressing and there are medicines they can give you to address specific symptoms.  One of my biggest problems is exhaustion.  There is no way to adequately explain how tired I am.  The mornings are usually pretty good, but by 2pm, I'm toast.  Additionally, if I try to exert myself, (like take a walk around the block or clean the bathroom or vacuum), I end up having to lay down for a while afterwards.

Up to now I've been trying to manage the tiredness with energy vitamins and caffeine, but I stopped the caffeine about a week ago because it aggravates my heartburn.  I take the vitamins around 1pm at work in hopes that they will kick in before I get home and give me the energy to do some things around the house and make dinner before the family gets home.  In talking to Dr. Banks, she suggested I try a medication called Amantadine which is mainly used to treat Parkinson's or Influenza, but it has also been shown to improve fatigue levels in people with MS.  At this point I'm willing to try anything, but I am also always nervous because you never know what side effects you are going to get with anything new.

Because I have been on steroids and have had quite a few side effects with those, I decided I would wait until I was off the steroids to try the Amantadine, so I took it for the first time yesterday. Yesterday actually didn't go too badly.  I took it first thing in the morning with a protein shake at the office.  Within the hour I did feel a little bit dizzy, but it wasn't anything I couldn't handle.  I didn't feel overly nauseous, but I definitely didn't want to eat anything and ended up not eating until dinner time.

As a note, I am very cautious in what I am eating right now and am trying to stick to a pretty bland diet because when I eat anything overly greasy or acidic I end up with terrible heartburn, sitting on the toilet for an hour, (TMI, I know, but I feel it's important to be honest for anyone else experiencing these symptoms so they know it is normal... this is what has saved me the past couple of weeks), or, in one extreme case on Friday night, throwing up. (I was feeling really good Friday, so we decided to go out to eat to our favorite burger place... after eating a burger, fries and shake, I came home feeling absolutely sick to my stomach and ended up throwing it all up within the hour.)  Thus my diet has mainly consisted of protein shakes, bananas, cherries, Activia yogurt, toast, beans, (black, cannallini and garbanzo all seem to agree with me), shredded canned chicken breast, rice and some salad, (but skipping most of the tomatoes and onions).  Needless to say, I've lost 15 pounds the past two weeks, but that is definitely a good, healthy loss... I need to lose another stack.

Today I was feeling good when I got to work.  I drank my protein shake just like yesterday and downed the Amantadine, except this time, it didn't go so well.  Within the hour I was feeling incredibly nauseous to the point where several times I ran to the bathroom expecting to throw up, but luckily I never did.  Also, the dizziness was definitely a lot worse than yesterday.  I was miserable the entire day at work and counting down the hours, but thanks to a pack of saltines in my laptop bag and plenty of iced water, I made it through.  After I got home I was on the toilet most of the afternoon with horrible cramping.  That lasted a couple of hours.

I called Dr Banks about 4:30pm and she told me to discontinue the meds for now and we would talk again next week and decide what the next steps would be.  I finally started feeling better about 6:30pm, but did not eat anything all day or night other than the saltines.  (Unfortunately, I had scheduled our neighborhood recipe exchange for this evening and I was really sad not to be able to taste any of the amazing food that was brought, but I took samples to taste tomorrow and definitely enjoyed the company).

At this point I don't know if I will give the medicine another shot or not.  I suppose I should try it one more time, but I would be lying if I didn't say that it scares me to think about going through today again.  Ah, the joys of trying new meds.

Because sometimes life has to feel normal...

I've been having a crappy week.  The oral steroids are still in full effect.  I have, what, 6 more days to go? Last night I hit a little bit of a low point.  I worked a full day, stopped at the store to pick up a handful of groceries, came home and made dinner and then I literally collapsed on the couch.  My family went over to help my mom and dad unload some stuff from the Hummer in to the new house. I couldn't go... there is no AC at the new house while they are doing part of the remodel and it is about 100 degrees outside.  Heat is my worst enemy right now.  It makes all my symptoms worse.

As I sat on the couch waiting for them to return, fully drained, feeling unable to barely move never mind function, I felt this pressing pain behind my eyes.  Good hell, what is this now?  I had a little episode earlier in the day in my office where my eyes felt a little painful, like there was something pushing behind them making them feel heavy and hard to stay open, but I chalked it up to the fact that my office feels 10 degrees hotter than anywhere else in the building despite the fact that I have two fans going in there.  It passed after I walked around the 3rd floor of the office building, but here I was having it happen again, doing nothing but sitting in my perfectly 72 degree cooled home, underneath a ceiling fan.  I just closed my eyes and waited it out.

By the time the fam got home I wasn't moving.  Mikey Jr actually fixed me a plate of food without anyone asking him.  You have to know Mikey to know that this is probably the first time he has ever done that... in his life.

After I swallowed some food I watched as my hubby, who had worked a full day and then helped unload my mum and dads stuff, did three loads of laundry, cleaned the kitchen, made the bed and got me to the bedroom.  It was 9:45 before he laid down next to me, and I was an emotional wreck.

When I woke up this morning I decided he needed some pampering too.  I put in my day at work, came straight home out of the heat and then cleaned our bathroom including our big jet tub.  It took me an hour and a few breaks, but I did it. :)  I finished just in time to get his text that he was on his way home.  Perfect.  I ran a hot bubble bath, got him a big glass of iced fruit juice with some berries and cookies, lit a candle and waited for him to get home.  After ushering him in to the bathroom to relax, I went and cooked his favorite greek marinated pork dinner and called it a day.  Completely lame after all he is doing for me?  Yuuuuuuuuuuuuuup.  But it is what I had in me to give today and I wanted to give it.  I love this man so much.  I'm so blessed to have him in my life always, but especially right now.

A glimmer of hope...

Despite all the craziness that the steroids have been causing, today I woke up with partial feeling in my left hand.  I recognized immediately that it felt different because usually when I wake up it feels like I have been sleeping on it wrong, but it doesn't ever go back to "normal".  It didn't feel like that today. Thinking I might actually be dreaming, I pinched my hand pretty hard.  Yep, pain.  Woohoo!  I haven't felt any pain in that hand for what seems like forever.  I scratched over the top of it, yep, I could feel it.  I ran my hand over Mike's arm as he was laying sleeping next to me and just enjoyed feeling his skin for a moment.  After he had left for work, I finally went through to the piano and played.  While I could still feel some tingling, I could feel my hand working better than it has in months.  The runs were a little bit easier, still not completely where they were before, but part of that could be I have been practicing less than usual due to my frustrations.

That wasn't the only thing I noticed this morning... for some unknown reason, my eyes seemed much clearer than they have been. Miles, our little shih tzu puppy, climbed up on the bed next to me and as I looked at her, I noticed texture and color in her fur that I had never noticed before.  It struck me so strongly, that I looked around the bedroom to see what other things looked different.  I saw the faint shadow of the hands of the clock, I saw little specks of dust sitting on my mirror, and intricate detail in the new wedding ring Mike bought me last November.  I'm not embarrassed to say that I just sat and cried for a minute, grateful for the tender mercy of what seemed like vastly improved sight, if even just for the moment.

It made me think a bit of how much we take little things for granted.  Being able to touch, taste, hear, see and feel... what beautiful gifts.  They definitely mean so much more to me now.

Solu-Medrol Hell...

Well, nothing could have prepared me for the toll these IV steroids have taken on me the last couple of days.  The nurse came Saturday to remove the IV after my last dose in the morning.  At that point I wasn't feeling horrible.  I was a little swollen... I was bruising easily, I had experienced a little difficulty sleeping and felt a little nauseous sometimes, but it wasn't anything I couldn't get through. The last couple of days have been a completely different story though.

I have started sweating profusely... not just a little bit, like dripping with sweat all day long, even when sitting at church or at my desk.  And heaven help me if I have to actually get up and DO something, it's like I'm running a marathon.  Here's what I looked like after trying to grocery shop...

I'm extremely hungry, but nauseous at the same time.  I literally want to lay across my desk or on the floor or on my bed because I am so exhausted, and I am dizzy with intense migraine type headaches. On top of that, I look in the mirror and see a monster... I feel so swollen and puffy.  I'm now on a reduced oral dose of steroids, still quite strong here at the beginning, but which will taper off over the next 12 days.

Last night I slept a total of 1 1/2 hours.  The burning, stabbing pain in my chest every time I tried to sit or lay down was unbearable, (apparently just a very intense heartburn), so after pacing the floor all night and swallowing an unknown number of ultra tums, eventually around 3:30am I was able to drape myself over the arm of the couch and get in a few zzz's before having to get up for work at 5.

To say I was careful what I ate today would be an understatement.  I stuck to very small portions of the BRAT diet during the day which helped ease the nausea, (mostly just a banana and toast plus an activia yogurt which has helped me with heartburn before), and then when I got home I looked up what else would be ok to eat that would fill me up a bit but not give me heartburn all.night.long. which is my biggest dread for this evening.

I did find tonight for dinner that some rinsed off black and garbanzo beans from a can with some canned shredded chicken and dried parsley is something that doesn't make me feel sick, has filled me up and doesn't seem to have any affect on my heartburn.  I'll probably live off of that for the next week.

I am so grateful for other people with MS who have written blogs because that is where I got the most helpful information the past couple of days.  (I thought I was having a heart attack last night before I read blogs that relayed similar experiences.)  Now if I can just get a decent night sleep tonight without any pain, that would be brilliant. :)