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,




Wednesday, March 01, 2017

Results

In a funk.

Last night I went to bed at 6:30.

Heard from the pharmacy about the meds. Here is what I heard. Blah Blah Blah...Don't put the needle too deep in the muscle you could have awful side effects. Something about heart racing for more than 15 minutes. Call 911. Blah Blah Blah. Most women complain about tenderness in the injection site, especially in the thigh and hip areas. It's a lifelong condition. We are hoping to find a cure. Many people live long lives giving themselves injections 3x a week. 

Sure. 

I bet.

Wonderful.

Today I got the written notes from both the brain MRI and the cervical spine MRI.

It read something like this. Tiny lesion... small lesion...another small lesion...another small lesion. Plaques. Lesions.  Oh, and something about how they change with the contrast which I can only assume to mean that they are active. The only difference between the brain and the spinal was the location there was lots of C2, C3 C4 C5 in the spine and the brain talked about hemispheres and such. Good stuff. Really great vocabulary. I had to actually sound out some of the words. Love a challenge.

Great

Reading.

Material.

I'm not sure how to explain what I feel. I know I was already aware. But to see it in print with those words. Yuck. My tummy hurts. But really it should be my brain that hurts and I guess my neck.

Does it make sense that I am just tired? I mean about learning about it. It exhausts me. As much as they know, they don't know. They don't know if my lesions will stop or continue. They have no idea what my symptoms will be. They can't tell me how fast or slow the disease will progress. Who are they anyway? 

Then I find out a dear old friend is going through the same stuff. I mean her symptoms are, of course, not the same as mine. But her "they" is thinking the same as mine. I feel crappy for her. I feel crappy for me. 

But I know it's just another moment that has already been planned out. Another step in this crazy journey called life. 

Words of advice from some wonderful people who are going through the same thing I am. One day at a time. No other way you can actually do it. Sometimes it's one step, one breath, one blink at a time. 
Keep your chin up and your pockets full of  tissue.

Happy Ash Wednesday.


Wednesday, February 22, 2017

Telling

The hardest part, so far, has been the actual telling. I mean who do you tell? Family, close friends, church members, relatives, co-workers... does it really matter?

Tonight I told my massage therapist. I figured she needed to know. She took it harder than I thought. That told me I must be getting conditioned to it. There's nothing you can do to make it easier. I just believe in honesty. It's always better to tell the truth.

I tell people my life story pretty much the first time I meet them. This will just be another page. Maybe even a chapter. We will have to wait and see...




Thursday, February 16, 2017

And MY side effects thus far...

I'm hungry. Not hungry but HUNGRY. Like my body is shaking because I need food.

I'm hot and achy. My neck is tender. I have a headache...like a tension head ache.

I am cold, like shivering cold, like I need a blanket and a coat on kind of cold and it's 50 degrees out.

I am not only not hungry but to even try to put food near my mouth or my nose makes me want to vomit.

But the one thing that is consistent is the crying. I cry. I cry myself to sleep. I cry in the shower, I cry in the car. I cry in the classroom. I cried in conferences. I cried on the phone. I cry. I just can't get a hold of my emotions. That will be annoying.

Sunday, February 12, 2017

Note to self

Don't blog at 3 am. I have no idea what happened to my text color and backgound. Can't even begin to read the html code to fix it, sorry.

Tonight I have a date with my sleeping pill again.

Lesson learned.

Side Effects

I took my first dose of 1000mg methlypredisolone this morning. Along with 18 supplements mostly thanks to my dear mother. I love you, mom.
I think we can safely say that insomnia is most definitely a side effect. I have slept only a couple of hours tonight. I forgot to ask if I could also take my sleeping pill along with this medication. I will probably remember that next time.Because this is exactly why I shouldn't "surf" at 2 am...

According to ehealthme.com these are the known drug interactions.

hepatic function abnormal

gastrointestinal haemorrhage
headache
acute respiratory distress syndrome
hyponatraemia
loss of consciousness
pneumonia
renal impairment
aaemia
arrhythmian


Yikes,I think I'll watch some PureFlix  instead. Say a prayer that I don't fall asleep working the concession stand tomorrow.Actually I hopped on to this blog to talk about the awesome day I had. I hope that is a side effect as well. The kids helped with household chores and animal chores and then we went for a long walk in the misty rain. It was a nice outing.

     I remember going to this same bridge with my dad and my mom and my siblings.
     Addison said this tree must be a Redwood. You can tell we have family in California.
     They found the largest shells down here near the ice.

    Rock throwing contest. You can see how far because it lands on the ice.

    Ended the day going to church and then having a glass of wine with friends. Couldn't really ask for a better first day of taking my medications for M.S. I feel blessed.

    I don't think I can even bare the thought of googling whether I should have had that glass of red wine. Oops.

    Tomorrow is new day, I hope;)