Thursday, October 28, 2010

Gagful

Yes, that is what I said.  I have a very sensitive gag-reflex.  Therefore, taking pills larger than an M&M usually presents a problem for me.  Especially when my tummy is feeling yucky.  Gotta ration the water to pill ratio so I'm not filling my belly with sloshy water.  It is quite the process.  And if you know anything about pills, just about ALL of them are larger than an M&M.

Seeing as my life right now is pretty much ALL about swallowing pills, I've just had to deal with it.  So far I haven't lost my stomach but I've got some silly tricks to let the pills go down when I feel like I'm about to gag.

My tried and true method is to take a sip of water, pop the pill and then recite in my head - "This is a red Skittle, this is a red Skittle...."  imagining that it's something I like and that it's sweet and tiny makes it easier to swallow I think.

Do you ever get a pill in your mouth and start to taste it and begin to gag but you know you just HAVE to swallow it.  I panic; my brain goes crazy trying to convince my mouth, stomach, and gag reflex that everything will be fine if I just SWALLOW the darn thing quickly.  But I get paralyzed all the more making the taste and feel of a large pill bumping against the back of my throat worse.  I try the "Skittle" trick to no avail.  This morning I frantically searched the heavens (as my head is usually tilted up and back so that the pill is in prime position to slide down my gullet) trying to find SOMETHING to psych myself into thinking.  My eye landed on a Wii remote sleeve -- these are opaque white things that cover the Wii remote.  And immediately I thought, "Okay - this pill in my mouth is a tasty, white sugar cube".  I had to repeat it a few times before I had the courage to swallow the pill but I safely got it down.

*Whew*

Am I the only one who has trouble swallowing pills?

Tuesday, October 26, 2010

Beat

Whew.  One week down of Cycle #2.  Another week started yesterday and I also got my blood count tested again.  A lot has happened since my last post......to my body, that is.  I've been so ill I haven't been up for writing but I felt bad not updating so here I am.

My white blood count THIS time is low.  But not as low as last time so we are thankful we can continue the antibiotics this week.  However, some other stuff on my blood work came back elevated.  This particular measurement indicated that I am not processing the toxins or inflammation in my body very well.  So now I am put on yet ANOTHER med.  And it so happens to be an expensive one that my insurance company may or may not pay for.  So please pray it will be covered! I will find out this afternoon. I THINK our insurance is pretty good.  And at least for my littlest one, when an expensive drug came up, we did have to pay a bit more than the usual $3 or $9 for the drug but it was about 75% less than the original cost so that's what I'm hoping with this new drug.

My husband is home from his 3 week work assignment and my Mom is still in town to help during the day!  What a blessing.  I am getting to the point where noise is quite bothersome.  I don't know how to quite describe it.  My whole body hurts and my general feeling of yucky-ness skyrockets when there are noises around.  I can watch tv which distracts me, but enter my 3-year-old and her new found love of chatting and I almost go insane. I love to hear her thoughts but it's just non-stop.  Thankfully Grandma runs interference.  But when she leaves in a few days I'll need to come up with some creative ideas.....like "quiet book time" on the bed in the other room....or "play time" in the other room.

Church is like a huge sensory overload. It hasn't ceased to be the most intense problem for my body.  My husband took me out and wheeled me around in my wheelchair on Saturday to get some errands done.  I WAS wiped out afterwards but I easily recovered with some rest at home.  And it was nice to get out.  Then Sunday came and it must be the combination of getting ready quickly in the morning, then walking into a sanctuary full of singing people with a loud orchestra, and just having to "socialize".  I tremble the WHOLE time.  And this last Sunday I nearly fainted a few times and I was only sitting!!! Who faints when they are sitting?

We want to continue to go to church but we're trying to figure out a different game plan to make it easier on me.  We've got a few ideas and I suppose we'll figure them out.

Anyone else out there who is chronically ill -- what "sets you off" the most?

Wednesday, October 13, 2010

Thankful

My white blood count is back to normal.  Thanks for praying. I resume treatment again on Monday.  Oh joy :(  Dreading how it will make me feel but thankful my mom will be up here then to help out while Matt is still away. 

What a family I have to take turns flying out of state just to help our family.  Thankful that God had me born into such a great fam. :)

Tuesday, October 12, 2010

Hopeful




Sorry about the pic.  It's the latest.  Smithers, I would like to hope, sensed that I was sick and decided to cuddle and purr for about 30 minutes.  But really, I know the truth - she had been gone for a whole week while my brother was here (he's allergic to cats) and when she got back she decided SHE needed some attention.  They say animals help you heal faster.  Or is that dogs?  Oh well, she's close enough to a dog.

I don't remember what I've written so sorry to repeat myself.

I had to go off of the antibiotics about 2 days earlier than planned because of a low white blood count.  Yesterday I was tested again (still waiting on results).  But it just so happened that this week was my "off" week anyway (off of antibiotics).  So I wondered how I would feel.  The "normal" (if there is a normal in Lyme disease) is that at some point off the antibiotics you feel "better" for a bit.  And the hope is that after each cycle of antibiotics, you feel better for longer each time.

Well, 3 days after I stopped antibiotics I wondered if I'd ever feel "better" again.  But then hope came yesterday.  Hard to describe because I still feel pretty bad.  But I feel better.  Let's put it this way:

Before (on antibiotics):
-throbbing joints
-headache/migraine daily
-sore-to-the-touch muscles (felt like I'd been in a car accident)
-constant nausea
-balance issues
-severe fatigue

After (5 days after antibiotics):
-bad fatigue (but not severe -- still can't do much other than lay on the couch)
-some headaches

So basically, I still can't do much, but I feel a LOT better while not doing much.  It may not last long but I'm enjoying it while I have it.

I am SO beyond thankful that I have help....24 hr. help.  I wish we had money to hire someone to do this once all my family has left.  My brother and sister-in-law and niece were so very helpful, anticipating needs and just taking over. I really didn't have to leave the couch at all and honestly, I couldn't probably if I tried.

My sister is here now and she is also being very very helpful.  Georgie is SO happy to have her here. And we're hoping to tackle some "purging" projects and organization stuff this week since I'm feeling well enough to help her sort through things.  She also doesn't mind holding Olivia who has just started to insist on things being done HER way and immediately.  We probably wouldn't give in so much if her yells didn't exacerbate my headaches.

So anyway - please continue to pray for our family and hopefully this "feeling better" will last a few more days :)

Saturday, October 9, 2010

Overdone

I've had 24 hr help for one week. I haven't really had to do anything except rest, occasionally take a shower, and occasionally put my girls to bed (they need a momma's love for that).  You'd think it would help get me to feeling a lot better.  But actually it makes me realize how much WORSE I'd feel if I didn't have this help!  I am so thankful for willing family members who flew out of state to come help me.

And today was the first day my only real complaint was JUST fatigue.  And it wasn't crushing.  So I ran a quick errand by myself.  This is actually a relaxing thing for me to do.  Especially if the store is very small, I only need to buy a few things, and I know the store owner.  Got home and felt a little more fatigued but nothing major.  I rested off my feet as I have been doing all week.  And then...

Then, my brother suggested we play Mario Brothers.  And then after that a friendly competition of Family Feud.

Who knew that playing video games could cause a near-meltdown?  I was shaking like crazy.  It's so funny to me the things that seem to really drain me - watching a tense movie, playing video games, sitting in church, laughing.....

I'm learning new stuff every day.

Friday, October 8, 2010

Halted

 1 1/2 weeks into treatment and it's come to a screeching halt.  I was feeling terrible which probably meant the antibiotics were doing their job, but some "safety" blood work came back abnormal.  Apparently my white blood cells have decided that the antibiotics can take over their job which is NOT good.  A low white blood count really isn't ever good I suppose.  So I'm taking a break and will get re-tested next week and possibly again if it is still looking low.  We'll wait til my white blood cell count goes back up to resume treatment.

A setback, but I'm glad the doctors take this stuff seriously and look out for the health and safety of their patients.

I've been off of antibiotics for 2 days now and I can't say I feel any different.  Maybe less nauseous because the meds make me really nauseous, but I still have that overwhelming fatigue where even talking is just too hard sometimes.  And LOTS of joint pain.

I really just can't wait to be rid of Lyme from my life.

So now the prayer request is to get my white blood count up very soon!

P.S - having 24 hr help is awesome!

Saturday, October 2, 2010

Nauseated

At the sight of these.  These are my meds.  Today and tomorrow I am "off" of the antibiotics (not the other supplements and meds, though!) and boy am I happy.  They just generally don't make me feel good and then when the die-off reaction occurs a day or two later, I just feel even more awful. *sigh*

Morning:

 Lunch:


Dinner (on left) and Bedtime (on right):

Friday, October 1, 2010

Weepy

Here we are on day 5 of treatment and for sure this is the worst day so far.  Ick.  I feel TERRIBLE.  I go in waves of barely functioning to what must be waves of adrenaline when I have to care for the kiddos.  Definitely the hardest thing I've done in life is being ill WHILE being a mom.

You want to train your kids as they grow and teach them to be kind and obedient but that really is a FULL-time job.  And I'm not well enough to do it so it just discourages me so much as the days go on.  I have to pray a lot that God will guard their little hearts until my husband and I can be more consistent in raising them.

I think I've cried more today than I have in a while.  Just so discouraging to be a mom and be ill.

But there's hope!  On Monday I'll have live-in help for a whole month!  And it will be various members of my sweet family taking turns to serve us that way.  It will be great to see them and much laughter will be had (which I'm sure helps in the healing process) :) and I will get more rest than I've gotten it a while because they are all servants and don't need to ask what needs to be done.  They just do.

It will bless our family greatly!