Monday, February 28, 2011

gooped

My daughter saw me take the first dose of this particular Babesia med this morning and said, "It's paint medicine, Mom."  Oh, dear -- you don't even know.  It's the thickness of paint too.  Thankfully it doesn't taste like paint.  That doesn't mean it tastes good, though.

I don't know if the meds can work this quick, but I'm assuming what I'm feeling this evening is to do with the meds.  And the "paint" medicine isn't the only things I'm on.  I'm on two other "new-to-me" antibiotics and two existing antibiotics.

It hit about 5pm and I was just knocked off my feet and in some new pain that I haven't been in in a while.

I'm just praying it doesn't keep getting worse and worse as the week goes on.

God blessed us with a very sweet family making us a meal tonight!  It was so nice to have it ready to heat and eat as our whole family is a bit stressed and stretched to its limits physically/emotionally these days.

Thanks for the continued prayers.

Sunday, February 27, 2011

restless

It is the night before I start Babesia treatment.  I have been subconsciously anxious about it for at least a week.  And now I find myself not being able to fall asleep because I just don't want tomorrow to come. I KNOW it's good for my body but I don't willingly want to walk into pain.  And yuckyness.  Ick.

Maybe I won't have a rough time with it.  That would be a big praise.

Please pray for me this week!  I'll try to keep you posted.

Wednesday, February 23, 2011

semi-recovered

It's not fair.  No matter how much I think my body is NOT anxious, and no matter how much I pray to calm my worried heart and mind - after my phone appointments with my doctor or his P.A, I end up having to physically recover from the anxiety I inflict upon myself getting READY for that appt.  This time it took like a week and a half?  Anyway -- the appointment went well!

I got the encouraging news that it looks like I am making some clear progress in battling Lyme.  This was so good to hear.  I mean, we've been noticing little things -- things that obviously don't mean I'm all better but things that are better than where I was 6-7 months ago.  It's just enough "better" that I don't lie in misery each day but not enough better that I still don't need some help sometimes.  I will take improvement no matter how much it is.

The doctor was so pleased with the progress that he said we can turn our attention to one of Lyme's co-infections called Babesia.  This means a whole new set of antibiotics with the exception of two of the old ones that are still meant to keep Lyme where we have it now.  I start them next week.  I'm a little trepidatious about this.  When I started targeting Lyme I was a mess and putting the drugs in my body and feeling the bacteria die-off was really pure misery.  I'm hoping it won't be as awful as it was when beginning treatment for Lyme/Bartonella.  And I'm praying it won't knock me completely on my feet.

There were lots of times where we lived before that a friend or family member would be helping me and I would just lay there on the couch with my face buried, only being out in the open living room in case someone needed me to answer a question about the care of the girls.  Each time I'd get up to go to the bathroom someone would ask, 'Do you need help?' a they watched me swagger back and forth with jello legs.  A bathroom trip meant getting to the bathroom and then waiting there when I was done until I felt enough energy to push my self up and start walking again.

O, Lord, please let this round of antibiotics do their work without hindering me much!  I really have been enjoying my girls lately and I don't want to be thrown on my back again.  But that is the sad thing about Lyme and all it's co-infections -- it's very up and down, sometimes unpredictable.  So we keep praying and hoping that God's will is for me to continue to go on an upward path and be rid of this disease as much as it can be rid of.

Thanks for praying for me.  I'll hopefully give a little update once I've started the new meds!

Friday, February 11, 2011

tense

I've got an appointment next week with my Lyme doctor.

There are so many things I'm dreading to hear.  I am new to all this so I don't know whether an absence of old symptoms is good, or just something that happens only for them to return when they feel like it whether you're on medication or not.  I feel ENCOURAGED by the last month even though I'm nowhere near being "well".  But I have no idea in the big picture of things whether the doctor will be encouraged or just say I've got a long way to go still.

I'm also tense about possibly starting a new treatment process for a co-infection of Lyme that was mentioned at my last appointment.  I'm afraid of it making me ill (which with Lyme is a good thing oddly enough).

I'm also anxious about the possibility of a PICC line that was mentioned as something that might need to be done this year.

I'm also fearful of a possible trip to see the doctor (most of my appointments are via phone because we live half-way across the country).  I'm fearful of the fact that travel the seems to exacerbate my health and take me 10 steps back.

So many fears and I try to calm my anxious heart with prayers and giving my fears to the Ultimate Caregiver.

"Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, for he cares for you."  I Peter 5:6-7

Pray for me when you think about it and I'll update you next week after my appointment.  Thank you!

Tuesday, February 1, 2011

indebted

WHAT would I do without my husband during this illness?  There are a lot of serious stressful things that happen in marriages that tear them apart and chronic illness can be one of them.  I am so so thankful that my husband has stuck with me through thick and thin -- "for better or for worse" "in sickness and in health" as our wedding vows before God and witnesses stated.

I mention a lot that we get a lot of help from beloved friends and family who give up their own time and money to care for our family but I don't mention my husband that much.  I think it's just because he works to pay for our life and my treatment and he's so much apart of our daily life.  He's home from work in the evenings and on weekends.

But here's what his typical Monday looks like:
-Up at 7:00, get ready for day, get coffee made (for him and for me), make sandwich and put in the fridge for my 3 year old's lunch so I don't have to spend energy doing it, leave for work.
-Work hard ALL day, making sure to check in via phone or email every few hours just because :)
-4pm - leave work and sometimes stop at the store if we're out of something or pick up my medication refills if I need them.
-4:30-5pm - home.  Hug and play with both girls who are getting restless just as I'm fading.  COOK DINNER - and this involves letting my 3 year old daughter "help" so she's not 'bothering' me and I can rest somewhat.
-While cooking, he juggles a 3 year old "helping" and makes time to give our littlest one her acid reflux meds 30 mins. before her dinner.  He prepares plates for everyone for dinner and prepares a bottle and solids for my youngest.
-I eat as fast as I can and that usually gives me a bit more energy then I take the baby who he's just fed, he helps our 3 year old finish her food, and then he gets to eat.
-After dinner, he clears plates, gets BOTH girls their baths, into their pajamas, and to bed if I don't have energy to walk the stairs to be a part of "night-night time" (which involves songs, stories, and lots of loves)

He'll take time off work to help me take the girls to doctor appointments, or take time off work to stay home with the girls while I go get routine blood drawn.  On Saturdays he'll take one of the girls on a "date" to give me time to rest.  He'll even handle BOTH girls for a whole afternoon on the weekend if I need to just crash in the bedroom and be left alone.

He cuts up my food on days when I have no energy or I'm in too much pain to do so.  He puts meds in my mouth if I'm having a seizure and clears a crowd of "watchers" or carries me to another room to keep my dignity.  He literally pours water down my throat when I'm unable to hold the glass still.  Now if you've never experienced that, it's quite humiliating.  But he does it in a way that doesn't embarrass me.

I think my husband is a stalwart.  And a rockstar.  And definitely someone I never doubt will leave me when times get tough.  He loves our family and me so very much through his actions and words and I'm thankful he's the one God chose to be with me during this illness.  We sure didn't know what we were getting into when we got married and promised to be with each other forever no matter what.

And you know what?  I haven't done the dishes in more than 6 months.  He may not get them done THAT night, but he gets them done the next morning or evening.  He also helps out with chores around the house when I ask.  And he doesn't complain.  He listens to ME complain, I'm sorry to say.  But I hardly ever hear him complain.

Now, I'm not saying he's perfect.  Who could be?  We both have our faults and I certainly don't view him as a flawless person.  Marriage is hard enough without something like chronic illness; chronic illness brings a lot more marital stress between husband and wife.  But what I'm thankful for is that he is often the one to "bury the hatchet" first when we argue, even if I'm the one being the stinker, and he also is the one in the relationship that doesn't worry.  I am a worrier (and even more so with this disease--I think it adds anxiety without your permission) and he not only tries to help me with that but puts up with it.  I know it's an annoying quality of mine to him.

So, yes, this is an ode to my husband and to all of those people who stay by their loved one's side when they are ill and just do what needs to be done so that everyone can "survive".  What would we who are ill do without them?  Thank you, Lord!