A few crappy weeks...

Ok, I'm not afraid to admit that the last few weeks have kind of sucked.

My shot dose increased from 20% to 50% the beginning of August.  The physical shot itself felt exactly the same as the smaller dose and I still only had to hold it in there for the ten seconds, but after a few days, I was actually feeling noticeably crappy emotionally.

The second week of the 50% dose I tried making a conscious effort to do things to improve my mood. I started reading a bit more to try and take my mind off of things when I was home alone.  I snuggled with the hubby more, completed little projects around the house like cleaning out the garage and sorting cupboards or going through storage boxes.  Sometimes if I was feeling super crappy I just plain took a nap, but I was still crying randomly over stupid, unimportant stuff and feeling a little more impatient with people than I normally do.

Last week it was time to move on to the full dose and I wasn't ready for those changes.  After the first one I felt so awful all night, (achy, sick, like I had the flu), that I probably slept a total of one hour before trying to get up and then admitting I couldn't make it in to work.  I feel like those kinds of side affects have subsided more and more each time I get the shot, thankfully.  (I've made it in to work every other morning after.)  However, the physical shots feel like there is a lot more spring behind them and I am bruising quite frequently where I inject them.  Most of all, I'm struggling with honestly feeling in a word, sad. (I have been on depression medication for several years and haven't struggled like this in a VERY long time.)

The most exhausting thing for me at this point in time is literally putting on a smile.  I told my hubby over the weekend that I am so sorry that he gets the crappiest part of me right now.  It is probably because he is one of the very few people I feel I can totally be myself around, because I know he knows every single thing I'm going through and I trust him to be able to see the worst and love me anyway.

While I've been going through these medication challenges I have sometimes spent my whole day making every attempt to look normal, smile and be happy.  By the time I come home I am completely exhausted from the effort and I sometimes just plain crumble.  I've honestly told more and more people about this diagnosis just out of desperation of being able to say "You know what?  No, I'm not feeling that good today, but it's not contagious, and I'm going to be just fine.  I'm just trying to adjust."

The good news is I have confidence it will get better.  The side affects I'm dealing with are hopefully more temporary than permanent. Thank heavens for pinterest and all the amazing quotes I can find in a pinch to cheer me up when I'm feeling down.  I also have the most amazing friend who makes the most beautiful things for my home that remind me to keep positive and think of my blessings. (And yes, she has an etsy shop and will do custom quotes... you can check her out at www.etsy.com/shop/alloftheabovebyem). Thank you Em for putting some light in my path right now.

At the end of the day, I am truly blessed with the most incredible people in my life.  My hubby, my kids, my mum and dad, other sweet family members and a handful of very special friends and coworkers who lift me up and make me laugh when I need it.  For that I am so grateful.  I know I can get through the crappy times because I'm not alone in this, and that actually is what makes all the difference.

Be Still My Soul...

I snapped this beautiful picture of the temple as I walked out this evening.  I wanted to remember tonight and the peace I felt as I left this amazing place.  Every other Wednesday I go to the Oquirrh Mountain Temple to play the organ in the chapel for the evening.  My shift is 2 1/4 hours long, which may not seem like a lot, but when you are sitting for that long balancing your torso on an organ bench as you play with both your hands and your feet, it can be wearing on your back for sure, even if you don't have any back issues.  I usually get to take two 5 minute breaks to run to the bathroom and stretch my legs every 45 minutes or so, but the last 45 minutes after the last break are usually my most difficult.  My lower back is usually pretty dang sore by that time and I always end up saying a silent prayer as I'm playing that He will help me get through that last little bit.

Some people may wonder why I do it.  I could ask for an earlier shift which are only an hour and half, but that would be a struggle for me to get to as I work until 3 or so every day.  I could just tell them I can't do it any more... I don't think anyone would fault me for that, but the truth is, that even though it can be a little difficult sometimes, it is one of my favorite things to do.  It is a service I get to give that not only do I love, but that honestly gives me just as much back.

There are a list of hymns that you get to choose from to play during that time that are approved for the temple.  I have put together my own folder of hymns from that list that I play through each time I go, and they are some of my favorite hymns... ones that give me strength and lift my heart. Sometimes as I read the words while I'm playing, I'm completely overwhelmed with the amount of love I feel from the Lord and my Savior.  I always say a prayer before I go in that the people there that night doing service at the Temple will feel the spirit, and that the spirit they feel will help heal their hearts from the troubles and afflictions they are going through, just as it heals mine.

One of my favorite hymns to play is "Be Still My Soul."  The words to that hymn give me so much peace, it is unbelievable.  I rarely get through playing it without tears.

Be still, my soul: The Lord is on thy side;

With patience bear thy cross of grief or pain.

Leave to thy God to order and provide;

In ev’ry change he faithful will remain.

Be still, my soul: Thy best, thy heav’nly Friend

Thru thorny ways leads to a joyful end.

Be still, my soul: Thy God doth undertake

To guide the future as he has the past.

Thy hope, thy confidence let nothing shake;

All now mysterious shall be bright at last.

Be still, my soul: The waves and winds still know

His voice who ruled them while he dwelt below.

Be still, my soul: The hour is hast’ning on

When we shall be forever with the Lord,

When disappointment, grief, and fear are gone,

Sorrow forgot, love’s purest joys restored.

Be still, my soul: When change and tears are past,

All safe and blessed we shall meet at last.

I have learned the past year more than ever that one of the best ways to get through any trial or affliction is to look for ways to serve.  It doesn't matter how you choose to do it... it doesn't have to be some big, grandiose way and you can pick ways that you absolutely love!  All that matters is that you try, and you will feel peace no matter what situation you are in.  I was asked to serve at the temple just weeks before I started noticing any symptoms and I don't believe that this opportunity came by chance at a random time.  I believe it came exactly when I needed it, and I am soooooo grateful. :)

A break from the heat wave...

Can we all just pause a moment and give thanks for this break in the heat wave we have been going through?  I actually was able to sit on the front porch swing with the puppy yesterday afternoon and stop at the grocery store on my way home today because the temperature was registering about 83 degrees.  I know this amazing weather won't last forever in the midst of this hot, Utah summer, but yesterday and today, I give thanks.

Inhale courage, exhale fear...

That's my new "I'm about to stab myself with a needle" motto...

I'm six shots in already.  Granted, this is only the smallest dose... 20% of a full dose, but this upcoming Monday I move to a 50% dose, and then after two weeks of that I think I go to full.  (They only deliver a months worth of meds at a time, so I'm not positive yet.)

Out of the six doses I have given myself four of them.  It's tempting to just make Mike do all of them, but I feel like I need to keep trying too.  I have to do it in a different place each time. The first time I did my left arm, the second time my left thigh, and then I had Mike give me one in the left hip, because it is hard to see back there!  This past week we did the same three spots on the right side. They said one of the most important things is rotating the spots you inject in to.  I have 8 spots to pick from between left and right.  I'm not sure how I feel about the stomach yet, so I may only be rotating 6... we will see how brave I get.

I do the shots Mondays, Wednesdays and Fridays, so that means I get the weekends off, which is actually kind of nice.  There are a couple of things I have noticed.  I do get a little bit "achy" about an hour after the shot, mostly in my legs, and it lasts for a few hours. Motrin and Tylenol definitely help, but I prefer taking the shot just before bed and getting to sleep before I feel it because I have found that can sleep through it alright.  As of now I have not had any reactions at the injections sites, which they say is one of the most common side effects, so lets hope that stays the way it is when they increase the dose. :)

Another thing I have noticed is that I have felt in a bit of a crappy mood, especially the day after the shots. I'm not sure if that is a side affect or just because I'm still adjusting to this life of needles, but it's something I'm aware of and monitoring so that I don't snap at people.  I've also found that the anticipation is MUCH worse than the actual shot.  The hour proceeding the shot is a time of anxiety for me.  I'm not sure I'll ever get used to doing this... pushing that green button is still so scary, but if I just do it quickly and try not to think about it, it's done and I can breathe.

My mum keeps telling me "you just have to learn to love the shots", ha!  I don't think that will ever happen, but she sure does make me laugh and sometimes I definitely need that.

You See, I See: Helping Kids Learn About MS

One of the MS Facebook pages I follow, (MS Lifelines), posted this today and it made me tear up a little... what a great way to explain MS to kids AND adults...

I am the face of MS.

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.