Monday, July 03, 2017

Summer Storm

If you ask my daughter she will tell you I hashtag too much. I adore Instagram and hash-tagging. This is a recent post of mine.

#summer #storm The crickets and birds are chirping their own melodies simultaneously. A rooster crows, the hoot of a different bird echoes the bellow of a calf over the hill. The sky is bright and dull at the same time. The winds pick up and get anxious and then stop altogether. The kittens scamper on the deck, oblivious.The black horse raises his head, as if to hear what the wind is saying. His tail swishes and he continues to munch. The clouds are completely still in anticipation The thunder takes its first cue from the Director. I sit and sip and wait for the first rain drop.


The girls are all about softball this summer. Sunup to sundown. Or they just want to get out of garden work :)

Home Field

"You don't need a ticket to see some of the best baseball in the world, you just need to drive one of the players to a game." Baseball has been a part of my life for as long as I can remember. I spent years driving all over this part of the state going to legion and amateur ball games, watching Ryan. I know how to get to more ballfields in the middle of nowhere than any person should. There is something special about the home field, isn't there? Especially when it kind of disappears from your life. I remember attending a state tournament while I was recovering from my surgery. It was too hot for me to sit in the stands so my father-in-law got me a tiny air conditioned room to sit in so I could watch the game. There were very few things that could stop me from watching. My oldest two children grew up at the ballpark. I remember Gavin hitting a plastic baseball off that Fisher Price toy T before he was a year old! He was born with the heart of a baseball player. Recently he told me, "I don't know why but I don't get nervous playing baseball. I get that way playing other sports but not baseball." He really loves the game, and I love watching him. Last night we were so blessed to be able to squeeze in a game on the same field where I watched his father play and his grandfather play. It was pretty special. Especially now since I know how extremely valuable life is. I love this quote. "Life will always throw you curves, just keep fouling them off...the right pitch will come, but when it does, be prepared to run the bases." Rick Maksian


I guess the title of my last post was absolutely correct.

The summer is flying by so here is a little update post. I may have to make multiple posts to get it all in. Sorry. When it rains it pours.

In eight days I will take the last of my six months of methlyprednisolone. I AM BEYOND EXCITED. This means I am only one MRI away (scheduled for October) from seeing if those lesions settled down and stopped firing off. The damage that was done is done. It will never be erased. But no new damage should be happening with the steroid and the copaxone cocktail I have been on.

Unlike cancer, I haven't been able to educate myself on this auto-immune disease as much. The symptoms are different for everyone as is the treatment.

People ask how I am doing. The honest answer is I don't really know.

Sometimes I am tired. Sometimes I am sore. Sometimes I am dizzy, forgetful, have trouble finding a word. But I feel like that is all the same as before I knew it was MS. The more I read about it. The more confused I get.

I had been getting relief from a monthly massage. But that has sort of slowed down. I feel like the relief is not lasting like it used to. In fact, I can hardly feel the relax part of it at all. Makes me a bit sad. I walked away from the last massage with a greater range of motion in my neck but I couldn't actually "feel" any different. I usually feel relaxed and rejuvenated. But the last couple of massages haven't given me that feeling. Now is that me losing some of the feeling in my nerves or is that my anxiety playing with me? I wish I knew.

Something new that has happened is my napping. I don't know if it's just summer or the fatigue, but every time I sit down I can catnap. It used to be that I could only sleep at night in my own bed.

Evenings are the hardest, by that time I am so exhausted I can hardly keep my words from slurring. I hate that analogy but it is truly like I am buzzing. I can't walk straight. I can't see straight. I can't speak clearly. It is odd. Even more weird is the fact that I am getting used to it.

I do my best thinking in the mornings. I am more cheerful. I enjoy little things. I am relaxed. By the late afternoon all of that is just barely a memory and I am struggling to keep up with the rest of the world.

Physically, aside from the evening dizzies, I can still maintain a four mile walk with a friend 4-5x a week. I look forward to those walks. It makes me feel normal for at least one hour of the day.
I have given up on much else as far as working out. I know I should probably do more. But, I am. plenty sore from the walking and I don't want to think about adding more pain or fatigue right now.

Emotionally, I am a social person. In the past 10 years that has definitely slowed some due to children and activities. But, I feel like I am more hermit-like now than ever before. I find myself cancelling plans and thinking of excuses to get out of activities more often. Yesterday, on the way to one of the kids' ballgames, we drove past the farm-place of a friend who had passed away from cancer a few years back. I immediately thought of my own friends who continue to invite me to their gatherings even when I don't hardly show up anymore. I am reminded that our life here is short and that the Lord gave us this time only temporarily. I feel guilty for taking it for granted that I will have time for friends and family later. This is something that I want to be better about. Spend time with the ones you love. We just don't know when our time will be up.

My injections are annoying. I am on copaxone. It is a 3x a week injection of a synthetic protein that is supposed to stop the deterioration of the myelin. I have to rotate my injections. I can do most of them myself, but the back of my arms and my hips are hard to reach. I often ask my husband or my daughter to do those. The injections are becoming easier. I have messed up my share. I forget to take the cap off the needle before I press the injector button. Sometime the needle is bent. I have accidentally pressed inject before I put the syringe in my skin and expelled all the liquid onto myself.
When I do it correctly, it's okay about half the time. Sometimes it stings really bad when it goes in and make a huge lump that is itchy and sore for days. I have played with increasing the depth of the injections and that has helped although I bleed a bit more. My thighs and my arms are the most itchy. I think the other areas are a little less annoying. I cannot imagine injecting without the auto-inject tool. I have a hard enough time using it. But to put that needle in all alone? No thank you.

I have a few friends who are going through their own MS journey. I am able to connect with them occasionally to see how each of us are navigating. It has been extremely helpful, although I believe I do not reciprocate the support that I receive. I hope to be better about that as I get more adjusted to my new route.

I was out and about the other day and I ran into someone who said something about her family member having MS. She sort of commented that every post of hers on facebook was about MS now and rolled her eyes. I immediately thought of my own journey and how I read something everyday that intrigues me and maybe I share too much, too. For a minute it bothered me, then I forgot about it. Another symptom? Or just a survival technique? Either way, I am not going to stop learning about the disease because it bothers other people. I have much to learn and I will continue to read and share and post. You never know who else is reading and may need the information. If not, scroll past it and move on with your own life. That's what I do.

I think that about covers this almost 6 month update. Our summer has been all about softball and baseball and swimming and gardening. I hope to post some photos in the next few posts.

Friday, April 14, 2017

Bad Blogger

I think it's safe to say that I am not a good blogger.

Life is CrAzY. I barely have time to think, let alone compose a decent post.

Know this.

Multiple Sclerosis is quite undefinable and unpredictable. I just can't quite wrap my brain around it.

I went in for the two month checkup since my diagnosis. My neurologist was impressed with my active lifestyle. At first I thought he was making fun of me for being busy. He even sort of giggled at me when one of my major complaints was fatigue..."I bet" he all but mumbled.

I was sort of impressed with the fact that three whole weeks went by without any terrible symptoms. I foolishly thought I was invincible. Then week four happened. By week four, I mean that it's the fourth week of my steroid. It's compounded medicine that I take once a month for inflammation. The first week it's pretty tough with my body feeling like it's buzzing and I get less sleep than I normally do. But then it has settled down and the rest of the month has gone smoothly. Until this past week. About three days before my monthly dose I got so anxious I didn't even want to take it again. I even put it off a day. Bad idea. Very. Bad. It may have been my anxiety or my symptoms. There is no way to tell. But I was dizzy, sore, exhausted, name it. It was ugly. And I still haven't gotten over it. I guess my Dr. knew what he was doing when he prescribed it.

This morning, after a short (long) week I feel as though I have been run over again and again by a bus. My neck is so sore I can barely turn it. My head is screaming as if I had a bottle of wine last night. I was looking forward to a nice relaxing Easter weekend but it seems I will be recovering from my not-so-smart choice of putting off the steroid for the time being.

The thing that is wonderful, amazing, and awesome is my support from friend and family. I have a friend who is so so so good about texting me and checking on me and she is also dealing with her own version of the disease. I have co-workers who look out for me, a family who checks in on me and my strong faith to carry me through the long dark nights.

With Him ALL things are possible.

So here's to week one all over again. Have a blessed Easter everyone.

Thursday, March 30, 2017

This girl loves to run...

Ain't no amount of sparkly dress, high heels, spray tan and makeup that can keep this girl from her running. She ran every event with a smile on her face. I am one. proud. momma. 5th place overall in the 400 meter dash and 10th place in the 200 meter. I don't know who's more excited for the next race.

Monday, March 27, 2017

She went to prom

My little girl put on a dress and a lot of makeup, got her nails painted and wore high heels. It was beautiful and scary at the same time.

We all went to watch her walk in the grand march. She was beautiful.

I almost cried. *Sigh* It's happening too fast.

Monday, March 20, 2017

The plague

Influenza hit us this past week.

Hit. Us. Hard.

Both little girls went to acute care with fevers of 102. Initially diagnosed with strep it turned ugly.

Maleah also tested positive for strep. She went down hard. The girl did not eat. This from the girl who eats everything. It quickly took down everyone but Gavin. When he had to come onto the main floor he would cover his mouth and walk through to the bathroom.

I am convinced it is more than strep. We are pretty awful at resting. If we felt good for even an hour we got up to do something. But we paid for it afterwards.

Today was the first day we were officially back at it. Tonight we are wiped.

It doesn't help that this week is super packed with dentist appointments, reading rally, church, prom, and the first track meet. It is complete and utter chaos.

I have officially decided that I am the worst person at resting. I wish I could show my children how to slow down and take care of yourself. But I can't. I am constantly thinking about what is next on the calendar. I can't take a nap in the middle of the day. I can't sleep in. I can't stop making lists in my head.

I am not a good example.

At one point we were all sitting outside this weekend. I thought to myself, how much longer do we have to enjoy these moments? How many more days will I be able to watch my beautiful children playing in the sun? When will they not want to run and play in the sun? When will they be busy with their own lives and not take the moments to sit and rest on the deck with me?

I wanted to freeze the moment. I wanted to forever feel the sun on my face. I wanted to forever hear the laughter of the girls on the trampoline. I wanted to forever hear the purr of the cat in my teenagers lap. I probably could have passed on the sound of the four-wheeler zipping around the driveway. But I would have loved to have frozen the joy of his face as he drove. So I could look at the joy whenever I want to. When the day is not sunny and the kids are not happy. I could remember this moment of this beautiful day.

I guess I can now. Thank the Lord for words and their ability to freeze this memory for me.

Thursday, March 09, 2017

And so it begins...

So yesterday I put my phone in the fridge.

Today I stapled a packet of papers backwards.

Then I forgot to take the syringe out of the fridge to make it room temperature.
Then, when it was finally room temperature I went to inject it and I forgot to take the lid off the injector. So all of the liquid squirted out all over me. Ooops.

According to the nurse on the drug company's hotline this is a common occurrence. Go figure. In patients that have short term memory loss, really ?! No kidding!

Today my nine year old got sick with the flu. She is currently moaning and groaning on the couch.

I think it's past my bedtime. Barely 7pm? G'night.

Wednesday, March 08, 2017

The first injection

I remembered at about 10:30 this morning that I put my phone along with my lunch bag into the staff fridge at school. I was kind of proud of myself for remembering it all.

Last night I gave myself my very first copaxone shot. I was in the neurologists office being coached by a nurse. I may have been pretty anxious. Turns out it's not all that bad. It felt like a bee sting. The injection site swelled slightly and burned temporarily. I has a few muscle cramps but I feel like that is because I put it in my stomach area. Either way it was short lived.

Now we continue this 3x a week,