Monday, September 27, 2010

Wiped

Oh yes.  This could be from our weekend and me doing more than I should have.

But I did start antibiotic treatment today.  Not feeling much yet except for crushing fatigue.  I mean, SO bad - it feels like a lead hand is weighting down your chest.  And I got a bad headache toward the end of the day.

Day 1 - over.  Let's see how the rest of the week goes.

Thursday, September 23, 2010

Ugh

Life does NOT stop even though you're chronically ill.  In the last week I've taken my daughter to the doctor twice, taken her across town to get an x-ray, been to the pharmacy 3 times, and have comforted this said little one for OVER a week.  And that's NOT normal doctor's appointments.  Next week the other one has a regular check up. *Sigh*

After today's ordeal I had my daughter walk up the stairs to our front door, knock on it, and when my husband answered she said, "Mommy needs help!"  He helped me up the stairs.  Too much exertion and stimulation and I felt like my symptoms were all back.  Thankfully with some rest I feel a bit more back to normal.

But really, you wish life would stop until you could feel better.  But no.  It doesn't.  Especially with little ones.

P.S - My daughter is thankfully not in a bad way and shall soon be feeling better

Terrified

I talked to the P.A today. I could have called earlier with a few questions I had but I just didn't. I know why I didn't. I was afraid that when she heard of the improvements I was having, she and Dr. J would conclude it would be a great time to start treatment. It's not that I don't want to get better, but man, oh man. Have you ever heard the stories or read other people's accounts of killing the Lyme spirochetes? It's not an easy thing on your body and I just already feel rotten, so why would I WANT to feel MORE rotten? I guess it's a "big picture" kind of thing. You have to feel bad before you'll feel better.


So she called and yes, she thinks I'm stabilized enough to start antibiotics on Monday. Basically my main complaints right now are SEVERE lack of energy and my arm tremors IF I exert myself too much. My pain is a lot better and I'm not dizzy or nauseous and only have balance problems when I over exert myself. And no seizures for.....well, for a while now. So I can keep my symptoms to a minimum if I basically lay on the couch all day. But I can't do that because I've got two littles that need me. I do the BARE minimum and boy does that make me feel like a lousy mom. I know I shouldn't feel that way but especially now that my oldest is getting to the point where she NEEDS that one-on-one contact a lot and asks so many inquisitive questions....well, *sigh* I just get tired thinking about it.


Did you know I have a great support system of friends at church? For the last few weeks I've had a steady help from one friend who comes and selflessly plays with my little girl. I don't know but I always was never one to ENJOY playing with kids before I had kids. Of course it changed when I had my own. But other people's kids? Not always fun. So I do really count it a huge blessing and act of servanthood for this friend to come spend half her days interacting so closely with little Goose.


Did you know I have other friends who help too? In the last two weeks I've had 3 OTHER friends drive 30 minutes to get to my house just to clean my kitchen, or vacuum my floors, or mop my kitchen or FOLD MY LAUNDRY....I don't know about you but I just figured folding other people's clean laundry was sort of just something you don't ask someone else to do. I mean, there's underwear in there. It's clean, yes, but it's still someone else's. So I never did ask anyone when they'd ask what they could do to help. But one of my friends just got in there and offered to do it. She didn't mind at all! And BOY what a help it was! I had a few loads just waiting to be folded and put away. You know what else she did? She went through little Livie's drawer of clothes and got out all the ones she had outgrown and put in the ones she now fits into. A huge task (in my weakened state) that now is completed. She also brought dinner and HAS brought a meal a week to us for the last few weeks. And promises to bring more :)


I had a friend make a Costco run for us since it had eluded us for the last few weeks. That's where we buy the little Cub's formula. It's cheaper there. And when she dropped off our stuff she came in and cleaned a little too.


I had a friend this week come that 30 minute drive to my house and let her boys play with my daughter. And while they played she assembled that night's dinner for us. What a blessing friends can be in time of need! This is the body of Christ doing what they are supposed to! And we don't take it for granted. We are SO thankful.


So back to the phone call from the doctor - I'm still not sleeping as well as she'd like so I'm going to start another med. to help me sleep better. Because good sleep is pretty crucial to your body recovering. It's all about getting your immune system back in control.


I got my MRI results. They showed my brain was fine! So thankful for this. My spine however showed a few spots of degenerative arthritis! Obviously this isn't normal for a 27 year old so the doctor thinks it's due to the Lyme disease. Lyme can cause early aging. Unfortunately there's nothing they can do to fix it but hopefully when we kill the Lyme it will at least slow down this "aging" process. That's the most she could promise is that we could "slow it down".


I'll be put on a few antibiotics at the same time for two weeks at a time. And then a fourth antibiotic on the last two days of each week (it helps "bust through" the cysts that form when the Lyme tries to "protect" itself from the antibiotics). Then I'll have one week off of all antibiotics. I'll do 3 cycles of this and then do a phone consult with Dr. J himself instead of just his P.A. We're grateful they aren't requiring me to fly there for the appointment. I'm to keep close track of my symptoms throughout treatment and it will help them know whether it's working. And throughout these whole cycles I'll be keeping in close contact with the P.A.


It's hard to know exactly what to expect because it's different for each person. It will probably exacerbate my old symptoms (pain, etc) but that means it's doing it's job. If it's unbearable pain we can adjust the doses, etc.


So please just pray for us. I'm SO SO scared to start this treatment because I know how awful it can make you feel. I start Monday morning!


I'm terrified but trusting that God will be with me (and our whole family unit) through this. He's sovereign over EVERY little thing in this universe so why should I doubt He'll help us through this?

Monday, September 20, 2010

Run Down

I don't usually put much about my girls on this blog but this video just about sums up how 3 year olds deal with chronic illness in the family. Especially when it's mom who is sick. Poor.little.thing. I mean, how do you explain no energy?
video

Wednesday, September 15, 2010


This is how I feel. But what the camera can't show are:
-hives all over my face
-fatigue, FATIGUE, FATIGUE
-some balance issues

....and 2 little munchkins to care for. I've had worse days I suppose :)

Monday, September 13, 2010

Suffering


“We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be” - C.S Lewis on learning of his wife's cancer

I think that's how Matt and I kind of felt as we went down the road to getting the diagnosis of Lyme disease. Weeks...months before we decide to head to DC to see the Lyme doctor I remember just being TERRIFIED at even the prospect of having Lyme disease. I knew what it could do to your body and I just thought, "No...NO.....I have two kids to care for and I simply can't get that sick." I didn't want to entrust it to God because I knew that if I DID, He might choose to lead us down a road of fiery trials and I REALLY didn't want to experience them. It was my sin of not believing that what He gives us and where He leads us IS truly what is best for us. We might not see why at the time but He cares for us. He wouldn't lead us down a road that was full of thorns if He didn't plan on caring for us the whole time and not letting us suffer more than we can handle with His help.

"He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, ‘This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.’" J.C. Ryle

We do try to "lean back" on this thought. It's hard at times I have to admit. I don't know that anyone experiencing physical sufferings and the repercussions it has on the surrounding family would ever tell you it was EASY to "lean back" on that thought. It takes daily, no hourly reminders.

Your 5 month old is screaming -- supposed to be sleeping -- supposed to be YOUR time of rest. Your 3 year old is arguing with you about what she wants to do right now. You are her mom and know what is best for her right now. You know it's critical that you get rest at this VERY moment or else your tremor might turn into a seizure or a fainting episode. And yet she argues more, not doing what you command. The baby meanwhile screams louder and louder. Your body aches, your joints HURT, your body feels like lead, your arm is tremoring like crazy. You have no physical help today. For your good....done in love.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. Psalm 46:1–3

That IS what it feels like, by the way. Not being dramatic or anything but it truly does feel like the earth is giving way, the mountains are being uprooted, the seas are swelling all around you hardly giving you time to get a breath without choking. I got an email of encouragement that in part said, "Crawl, don't walk today...you might fall and break a bone." I wrote back with tears streaming down my face - "How am I supposed to crawl while carrying a baby!?" But it's true...I have fallen...many times. Bruises to account for each one. But guess what? I've never fallen while carrying my baby! God has protected her.

"Everyone feels benevolent if nothing happens to be annoying him at the moment." - C.S Lewis Problem of Pain

Life is NOT how we dreamed it should be at this stage in our life. Married to each other - each other's best friend, 2 beautiful girls. I think we envisioned our lives being more adventurous. I mean, this truly has been some kind of adventure but we thought we'd be adventuring in other ways - across the world together, hiking, traveling, being more involved in our church, being more involved in tuning the hearts of our little girls. I know for a fact that when we vowed our vows on our wedding day, that neither one of us expected THIS.

Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed. I Peter 4:12-13

But really we should have been ready for it, not surprised. If we were truly letting God lead our lives we wouldn't have been so taken aback. Even with the good things He's given us. I've always been so surprised by them. How wonderful the good things that God gives us are. We have SO many blessings and each time I was surprised at how good they were, when really? I should have known it would be so wonderful based on WHO He is. Maybe if I had spent more time studying WHO God really is I wouldn't have to remind myself that the good things are more wonderful than we can imagine and the bad things are not out of His control.

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain” - C.S Lewis The Problem of Pain


We don't doubt God's sovereignty over this trial in our lives. Even as bad as it is and as worse as it's getting. We're no longer at the point of feeling shocked at each new physical scary symptom. We're leaning on our Guide knowing that He may keep giving us scary things to deal with and giving us things we don't want to experience. But we know it's not out of His control. He is leading us all the way. For your good....done in love.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8

And then in the middle of this our oldest one was afflicted with a painful uti. The type of thing that hit when all doctors offices were closed. We took her to the ER. I should restate that...I took her to the ER. Matt and I debated about it. He didn't think I was strong enough to do it alone but we didn't want to drag our littlest one into the germ-fest arena. I told him my adrenaline had kicked in and I would make it. I might crash the next day but I could do it. It was a long night and yes, she did have a urinary tract infection. Poor little thing. Put on antibiotics. Follow-up appointment. All looked well but they just wanted to test her again in case.

I got the call today that I'm sorry, but your daughter STILL has the uti. More antibiotics for her. All that races through my head is Matt is gone all day/evening today; I'm not well enough to drive WITH kids to get antibiotics; WHY? and then I breathe.....For your good....done in love. A friend texts me: Did you get anyone to come help you today? I'm coming right over.

And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail. Isaiah 58:11

-PAIN...lots of it. Getting better, though with meds. But not gone.
-LOST SENSE OF BALANCE...comes and goes thankfully so I'm not hobbling around the house too much. But I've fallen a lot and when/IF we go out I put all my weight on Matt to get to and fro.
-FATIGUE...so SO much that sometimes I feel like lead. I stood up yesterday and fell to the ground on my knees bent over the couch. Matt came over and literally lifted my lead body back on the couch. Sleeping doesn't help. It's not tiredness...it's physical energy give-out.
-TREMORS....which my doctor does say is a form of a seizure. Usually happens when I'm stressed physically or emotionally. To stop it I can either try to relax or if it is starting to get out of control I can take some medicine. One of these days I'll video it for you so you know what I mean.
All caused by this Lyme disease! Yuck! I want to be rid of it. I hate that it has ahold of my body and brain. Yuck!

We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. 2 Corinthians 4:8-11


So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
2 Cor 4:16-18

We may be suffering over here but we haven't forgotten who we serve. And He cares for us. This is our God:



Sunday, September 12, 2010

Ickity-Poo

Well, still no seizures so that's a great sign. But I still feel yucky. BUT, I am having more and more GOOD "moments" throughout the day. Moments that I'm NOT dizzy, that I DON'T have balance problems -- that I feel fairly "normal". Problem is, these moments are usually short-lived. But I take it as progress. Someday MOST of the day will be good? Right?

What do you do when you're chronically ill and one of your kids gets sick? They NEED their mom. They need the hugs and cuddles and extra energy and attention it requires. Especially when they are a little baby. They don't understand "Mommy's sick" or "I don't have the energy to walk in there and help you". So you just have to FORCE your body to do it.

Thankfully the littlest one got sick on Friday and so I only had one day to deal with her alone. Often I was mustering every ounce of energy (that I don't have) to get up when she woke up early from her naps and needed cuddles. I just have to say, squirmy cuddles are not like still cuddles. Squirmy cuddles require about 10 times more energy than still cuddles. *sigh* Just thinking about it wears me out.

I'm thankful for my husband who basically did ALL the caring for the littlest one this weekend and we're looking like the sicky is on the mend. So hopefully when he goes back to work tomorrow it won't be as difficult to care for a sick one when I'm ill myself.
I'm so thankful for healthy (in the sense they do not have a chronic illness) children. So I suppose I shouldn't complain when they get normal sniffles.

I really just want to be "well enough" to start killing the Lyme. I hope that can be soon! I want to be well and a normal mommy. You know you're not well when your 3-year-old often asks, "You're not feeling good, Mom?" or comes up to you as you lay on the couch and strokes your head and says, "It's okay, my wuv. It's okay."

Wednesday, September 8, 2010

Wiped

Well, no seizures for over a week now. But when I get particularly overwhelmed sensory wise I get a huge tremor in my right arm. So for instance, the whole getting up for church and getting ready (even though I have help from my husband) sort of takes its toll and by the time we drop the girls off at their Sunday school and nursery and sit down in the worship center, I'm trembling like crazy. Also when we were watching a particularly tense movie I got a big tremor. When the little Bear Cub cries loud and hard on longer car rides....you can see what I mean.

I usually need assistance walking. Although some days are better than others. I have a few well-placed bruises from falls I've taken around the house. When we're out Matt usually helps me get around. At the house I can hold on to things. My husband jokes I should use his hiking poles to help get me around :)

Car rides are THE worst. I get so dizzy and nauseous that by the time we reach our destination I am usually feeling like I'm going to pass out. Hubby has to take the girls in then come back out and help me in and all the way I nearly collapse a few times. Usually getting me to the couch for a good 20 minute rest will help alleviate those symptoms. But if I get to that point then you can bet my arm will be tremoring like crazy. I've found a few tricks that help car rides a bit. And I will say not ALL car rides are the same. Usually if I've already done some stuff that day, that last car ride of the day (to get home) is usually the worst. So in other words, the more taxed my body is, the worst the car ride.

I'm really fatigued. Around the house if I'm alone with the girls I basically do JUST what needs to be done. Change diapers, feed bottles, make lunch, help the Goose with the potty, put the girls down for naps, etc. The house is A MESS. My husband comes home and makes dinner and thankfully can usually get at least the dishwasher loaded and washed and usually can wash the rest of the kitchen.

Last week we were so blessed by friends who brought meals and came over to help with the girls. This week a friend is taking the Goose for 5 days so that I can see if I can rest a little more. Maybe dealing with just one little one will help calm my system down a bit more?

My doctor is hopeful that a few more weeks of the meds I'm on and with rest, my nervous system could be calmed down enough that I can be ready for the first round of antibiotics! I hope so. I'd love to start killing the Lyme "bugs" soon!