thankful

These last two weeks of treatment I have felt better than I have felt in a while.  I'm not getting my hopes up that it means anything because it could mean so many things and I could go back to feeling awful in the change of a day.  I mean, even within these encouraging 2 weeks, I had 2 really horrible days.  But the trend that I've had of feeling better is making me cautiously encouraged.

Now instead of being in painful misery on the couch and unable to muster the energy to move, I have been able to walk up and down the stairs in our new house a few times a day without needing to recover.  I've been able to feed and care for the girls without feeling like it was only a job that HAD to be done (otherwise I would curl up and hibernate).  Now, I have had help.  My mother graciously booked a last minute ticket to come help us with the girls, unpack, and put stuff in order here in this bigger house.  Such a blessing!  But even with her here, I've been able to work with her and not just lay somewhere and interrupt my misery to answer questions.

I'm so thankful!!  Even if it turns out that I spiral downward once again, I am thankful for these 2 weeks of somewhat of a respite.

What I still feel?
-I do rest as much as I can. Even if I don't feel like I need to.  And I've seemed to be able to tell as I'm "working" when I need to take a break - like the point right BEFORE I would feel like I should take a break, I stop.

-Some joint pain upon waking and then at the end of the day.  Pain has never been my biggest problem, though.

SO - - - thankful today!!

(Q&A)

Check out this Q&A I had the pleasure of doing on Sara's Lyme Pregnancy Journal blog.  She's done a great job of pioneering first-hand experience of how Lyme affects (her) pregnancies.

Q&A

up and down

Such a hard thing about Lyme is the up and down days.  You can have a string of really bad days (can't move from a laying position, nauseated, mentally confused) to having a day or two that's really good (able to walk around the house without getting too fatigued, hungry, mentally clear).  And on those "good" days you wonder if you've reached a breakthrough only to be crushed emotionally when the following day begins another long string of "bad" days

And sometimes, your "good" days are false.  You're riding on adrenaline so you feel supernaturally good.  Days like - the excitement that your relatives are coming, the hectic-ness of traveling, etc.  But then eventually it hits you hard. Once your body relaxes you realize you were running off of the high of adrenaline and then it usually doubles your time of recovery.  That's why a lot of Lymies avoid stressful (even though fun) activities.

So with the knowledge of that, I often wonder when I have a "good" day whether it actually is good or whether it's a "false good" day.  I search my brain thinking of any sort of possibility that could account for why I might feel falsely good.  And at the same time I get a tingling hope that maybe it's progress in my treatment as the cause of feeling good for that day.

I suppose in either situation I should be ever so thankful that I do get moments of feeling "good".  Those days I always enjoy my little children more, I am nicer to my husband (who deserves so much more than I give him), and it's just easier to feel like I'm myself, and not someone whose body has been taken over by a really yucky disease.

cautious

Did you know that not all most doctors do not believe that chronic Lyme disease is real?  It is such a heartbreak to hear that and to see through other friends stories that it happens all too often.  Nurses will balk at the fact you are taking so many antibiotics and literally walk out of the room in a hmph! And doctors will raise their voice at you and say, "It does not exist!!"  It is the common thought these days in most doctors' offices that Lyme is not real. (You can read about the controversy here)

What a slap in the face to those of us who have it and suffer daily.  It makes me thankful for the doctors who literally have to be so extra careful as they treat patients for Lyme disease in the proper way because they can run into so much trouble with insurance companies, other doctors, etc.  I'm so thankful for my doctor who has already suffered bankruptcy by the hand of an insurance company, and so much more, just because some people don't believe chronic Lyme is real.  It's encouraging to know he truly wants to help those of us who he treats and he will really stop at nothing to make sure we get the care we need that others won't give us.

Anyway, all that to say - a couple days ago I went to try to establish care with a general practitioner.  I just need a doctor for the normal sickness type things.  Like ear infections, colds that turn into bronchitis, etc. My Lyme doctor doesn't deal with that kind of stuff.  But getting a general practitioner for people like me who are already ill with Lyme isn't always easy.  It really is basically an interview -- I am making sure this doctor will take me seriously and that I can trust him to help me when I get "regular" sick without judging me for the controversial illness I have.  But at the same time, you don't want to overwhelm the new doctor with a sort of "I-know-more-than-you" attitude.  It's a fine line.


We all traipsed in there.  Matt pushed me in the wheelchair, I held Liv, and Georgie followed behind.


I was SOOOOOO anxious.


Turns out that this doctor seemed very sympathetic and didn't know much about Lyme at all.  He asked US questions about it and just felt a lot of compassion for me (seeing me in the wheelchair and all and me being so young).  He said he's there for whatever we need in the future and he's glad to keep in touch with my Lyme doctor.


So for now I am cautiously optimistic that this general practitioner is good.  I've met more than a few doctors that I've loved the first time and then from then on have gone down so I can't get too excited yet.  But I am thankful he wasn't outright belligerent about Lyme disease.  That is always a good sign.  Thank you, Lord!!!

outnumbered

I have begun what I haven't done since November - and even then I had help a few times a week - I'm caring for my girls without help.

Well now that my little 9 month girly is old enough to sense that I can be outnumbered, she seems to have brought on her little impish ways full force.  What an angel she is when Daddy is here or when Grandma was here.  Even around the holidays when we were surrounded by family, no one would believe me when I told them what a little scamp she could be.

And why is it, that when the little ones sense you are sick, they decide to be on their worst behavior?  I mean, just having a normal cold or flu for those of you who aren't chronically ill - you know what I mean.  For me, every day is a sick day and I think my kids have gotten used to that.  But definitely on the worst of those sick days, they seem to huddle and work together to foil all the order I have tried to plan for the day as I lay hopeless on the couch.  And I believe the mastermind behind the shenanigans is my speechless 9 month old.

My three year old is a compassionate little soul and I will say she tries to "help" me and please me most of the time. But she is only three afterall and all three year olds can't be expected to act like adults :)  I am convinced that little 9 month old Liv has her sights set on the weak one in the herd just because she knows I can't do much to stop her.

-She knows just the pitch of a loud yell that will pierce the ache in my body and she won't stop doing it until someone picks her up.  I believe that ignoring it is the best course of action and she will stop because I used that method with her big sister when she was that age.  The only problem with that method NOW is that I'm so sick that it's hard to ignore it when it sends your body writhing.  It's amazing how SOUND can cause so much more pain in an already pain riddled body.

Seeing as I simply cannot pick her up and hold her (since she insists I stand while I hold her), I have had to ignore her as best as I can and I do see this method working.  But all it takes is ONE person picking her up when she yells for the whole cycle to start all over again.

-She senses that when I'm in a hurry or stressed (like trying to get the girls food at about the same time) that she can really push my buttons by following my every step, being underfoot, and eventually crying very hard and loudly when I walk out of her eyesight for a minute to get something else.

-She poops 3 times in one awake period, because she knows I just got up to put away the diaper and wipes. :)

-She doesn't finish her bottles or solid foods for a whole day because she can tell that worries me.  Then the next day has a normal day of eating everything I give her just to keep me on my toes.

-And so much more.

Awake times are hard at this point.  Granted we are staying in a timeshare and not our house yet.  The house is not yet ready for us (beds are still being put together, clothes still being put in their drawers, etc).  So I think once we get back into a normal "routine", it will be better.

And it's not all bad.  I mean, for all her devious ways, she does sleep really well.  She takes TWO 2 1/2 hour naps a day.  And sleeps 12 hours at night.  I mean, I guess I really shouldn't complain at all because not many moms can say that about their kid.

But anyway -- I'll say it again -- taking care of two young kiddos while chronically ill is probably one of the hardest things I've ever had to do.

And it's also a joy.  There is so much reward that even on the toughest day I never wish I wasn't a mom.

optimistic

We all made it safely to the new state we will call home!

Matt and the girls had a long, but fairly easy drive (thank the Lord!!).  Even little Livie faired well and was a much better traveler than she was last summer.

My flight was just fine and though I felt ill, it didn't seem to tax my body much since I wasn't holding a little baby on my lap this time.  I actually feel as though my body is rallying a bit (knock on wood).

Within two days of being here, we were able to secure a house, actually get the keys and sign the lease, and take the kids and Grandma to see it!  Now we are just waiting on our shipment of household stuff so we can move in.

Thankfully we are staying in a timeshare until then.  So there's no pressure to get moved in ASAP.  It helps my physical body to know we can rest in a place with all the amenities as the house gets unpacked and stuff.  And guess what?  The movers will unpack everything and put it all away for us!!!  My husband doesn't start work for another week so he will hopefully be able to handle that whole business.  Less stress on me.

So all in all, it has been fairly easy considering my condition.  Tonight Grandma leaves so this week may be a bit harder but at least we have the biggest hurdle done (getting a place to live).

Thanks for praying!

anxious

I know I shouldn't be anxious because I can cast my anxiety on the Lord, but sometimes even though my head is fine, my physical body doesn't seem to get the message.

Here's the rundown:
-My girls and husband are taking off tomorrow for a multi-state drive to arrive in our new hometown.  I am not well enough to log all those hours in the car (2-3 days) so I will be flying in a few days on my birthday.   We originally planned on me taking our 9 month old on the plane too, but my body has deteriorated so much in the last two weeks that I can't even hold her for more than a few minutes.

-I'm in a treatment week so it will still be tough to fly.  I fly out on January 6th (Happy Birthday to me)

So please pray for safe travels for all and that we'd quickly get settled in our new state.

light-hearted

I'm just so thankful for my little girls!

Happy New Year