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.