Tuesday, June 28, 2011

bummed

My sis wiping noses and keeping the kids entertained
My sister was here for a week.  She was here to be a friend and encouragement but also to take care of the little ones 24/7.  It was so nice!  It was 1 of 2 "off" weeks and I was actually still struggling from all the toxicity in my body from the last round of antibiotics.  So I was fairly useless.  B12 shots helped me be able to go on a couple of date nights with my husband (as those have been few and far between).  But mostly I was on my permanently worn in spot on the couch enjoying the sounds of my girls playing with their Auntie.  It was mostly an energy problem this week and not so much a headache/yuck/pain week.

Then today, the day she leaves (starting of week 2 of the "off" weeks), I am feeling a lot more energy.  So yes, it is a blessing that right as she leaves I have more energy but also, a huge bummer that I can't spend this week that I will feel better "playing" with my sis.

But I have certainly noticed that when we have family and friends come to "help", it's often been the most appropriate week(s) to NEED help.  And these trips are planned WAY in advance not knowing whether I'll feel well that week or not!  God always orchestrates it to my benefit.  I'm so thankful.

As of now, we expect no more "live-in" help between now and November!!!  That seems daunting to me, especially as I start a very intense protocol on Monday.  *shudder*.  I am anticipating feeling like "death" and am starting to shake a bit at the prospect of willingly doing that to my body.  But I KNOW it's for the good of my body.  It's just hard to do it.

We do still have our church body of friends and I know some will be able to help here and there (it is summer after all so I'm not expecting people to bend over backwards when they have plans), but I know this next round of meds will require live-in help.

So Matt and I are just praying.  We don't exactly know what we need but we're praying that (as always), God will make our paths straight and give us just what we need.  Sometimes it means an unexpected call from a friend or family member out of state who says, "Can I come help for a week or two?" And sometimes it means a week or two (or month) of struggling SO hard that you feel as though you're hanging by a thread.  But after, you feel closer to God as He's deemed you "fit" enough for that kind of trial.  Sometimes I wonder that maybe I must be extra "fit" to be given what seems like pummel after pummel of trials with this disease.  I don't feel spiritually fit.  I'm not down and out as God would not leave me lying there.  He always helps me up and I have hope......hope like a bright beam through this dark tunnel....hope in Him that makes these daily trials not so despairing.

Saturday, June 18, 2011

in awe

It's pretty ridiculous if you think about it -- that the CDC wouldn't believe in a chronic illness that so many have and that is incredibly easy to get because it isn't treated the right way.  I mean, so many people are exposed to it through hiking and even just living in proximity to ticks that carry these diseases.  If you don't believe me, take this story -- it'll blow your mind.

Melody was diagnosed with Lyme nearly 3 years ago and had been suffering from symptoms since she was 16!!  She contracted Lyme in 2001 after hiking in the same area that I contracted Lyme in.  Only I got it way back in 1989 or so!!!

And her husband - my husband's brother - found out he had Lyme disease 3 months after his wife, Melody was diagnosed with Lyme.  So you think, "Well, maybe he got it from her" (yes, it can be transmitted sexually).   But their doctors think (based on when his symptoms began) that he got it completely separate from her in 2005 (they weren't married until 2007)!

My dear, sweet brother-in-law and sister-in-law suffering from the same disease that I have.  They sort of paved the way for me, going ahead with tests, treatment, etc. before I did.  And they've been a huge encouragement and ear to bend when I need it.

But that's the thing that astonishes me the most.  That we, who are all related NOW (not by blood), but didn't know each other THEN, all have the same chronic illness that people deny exists AND that people say you CAN'T contract in California (where all of us grew up and where we all got it in varying years).  Sheesh!!!

I really blows my mind.  But in God's plan for us all to have Lyme I've seen the good that has come from it.  Like having close family who really truly understands what you mean when you say you feel terrible today because they've felt the exact terribleness you're talking about.  And having them to pray for you who can pray a little better because they understand how and what to pray for without even asking you.  So while it blows my mind, in God's mind there are details worked out that we don't even know yet and I can trust and appreciate the good things that have come from this so far.

Melody with my oldest daughter when we visited
at Christmas last year.

Spencer with my youngest daughter at Christmas

Thursday, June 16, 2011

Flagyl-ed

So it came to me one night that it might help some of my friends and family know just how sick I am (not that they don't believe me, but it's hard to understand just HOW sick) if I took some video snapshots from the beginning of my day to the end.  But as Lyme would have it, it ended up only being 4 short videos in the span of 10 minutes; I was just too beat to do any more or any earlier.

 On a Flagyl days (which means the big guns are brought out...only 2 days a week and this drug is a "cyst-buster") I feel terrible and you can generally tell by looking at me.








Monday, June 13, 2011

yuck'd

Second week in a row of "paint medicine" (Mepron).  This is the LAST week hopefully.  At least for a while.  And after this week I get a 2 week break. *sigh*  Then after that I start my new antibiotic protocol.

I currently feel so yucky and nauseous and generally do while I'm on Mepron and Doxy.  Yuck yuck yuck.

But today was my oldest's 4th birthday.  And I decided this morning I would try to just push through the fatigue and "play" with her.  Which for me consists of her bringing me toys and we play as I sit there.  First we played where you pick a rose and it's a "sleeping" rose that makes you fall asleep and the other person has to "save" you by playing a magic harp.  We played about 20 rounds of that.  Then we played with her stuffed kangaroos.  There's a mommy and a baby.  She wanted us to pretend they did "mommy and baby things" together.

Then she wanted me to read to her so I did...2 whole chapters out of a chapter book.  And then to finish it off, we watched Cinderella together.  All of those things are way out of the ordinary for me because I just don't feel well enough to most days.  I'm grateful that God gave me the bit of energy early in the day to do all that with my girl.  She was so happy and it was fun to please her on her special day.

But, by mid day I was crippled again like most days and thankfully my husband came home early to tend to the kids and tonight as we celebrated Georgie's birthday with food and cake and presents, I struggled through, but was just so happy to watch her delighted face that we were all sitting together at the table for dinner and to celebrate :)

Thankful for my little girl!

Wednesday, June 8, 2011

worn


Just got back from Washington D.C.  I've been recovering from traveling and also just thrust back into antibiotic treatment so my body is not treating me well.  But for so many of you wondering, here is how the appointment went:

I was real nervous going into the appointment so I got a little shaky but it was fine.  I keep a detailed account of how I feel each day then condense it before each appt and send it ahead (a Word document) to be put in my chart for the doctor/P.A.  So when our P.A came in (we love her sooooooo much), she spent a long time going over every detail with us.  She loves that we do this detailed account.  I mean, when you're going 2 months between appointments it's nice to have symptoms and such written down to remember and also for the doctor to see a trend in your health to help determine what is helping/hindering you getting better.  I get praised by nurses and staff and doctors for doing this.  It helps  especially when you have Lyme-brain to have something to look at that refers to the last few weeks so you can help describe symptoms and such.

She spent from 2:15pm-4pm with us!  We didn't feel rushed at all and we were able to ask all the questions we needed to.  And she addressed all our concerns.  It's nice to have a doctor's office that really cares and doesn't focus on how many patients they can get through each day.

Basically the P.A said that it definitely looks like my immune system is sort of "catching on" that it needs to work to fight and that is a really good thing.  And as far as the last rounds of treatment that were targeting Babesia, she thinks based on my symptoms while on the meds, that it really did work on that "bug" and that since only just the last two weeks I have started having normal "off" weeks (off the medicine) she wants me to do just one more two-week round of the same meds (all done "paint medicine" after this!).  

After that, since my immune system is showing more improvement, she's going to intensify the protocol.  So instead of taking meds M-W-F, I'll be taking some new ones M-F for two weeks.  Then two weeks off.  I'll do a few of those then consult on the phone with her to see how it's going and then go from there.

She did physical tests on me like she did last time.  My right side was bad at the resistance tests this time.  My right side is the shaky side.  We're going to try to get my legs strengthened a bit in the meantime with some exercises I can do while sitting and laying back since I don't have much energy to do anything else!

I've been having some "stress" herxing where it feels like I'm having a heart attack (pressure, dull pain in my chest and tingling in my arm).  I had already called a nurse about this when it first started and was told to up some medicine that I'm on and that did seem to help a lot but my doctor said the real way to avoid this is to avoid stress all together!  Easier said than done obviously :)

She gave me a prescription for pain medicine.  So far I've been able to deal with the pain but on the last rounds of treatment I started to really suffer.  So when I'm in that excruciating down-to-my-bones pain, I can try it.  I think it will make me loopy but I'm glad to have it for when I really need it.  It's a non-narcotic pain med thankfully and she said it works more to sort of target that nerve related pain.

I also asked if I could stop taking the b12 lozenges because I thought they weren't working AT ALL.  And I asked for a prescription for b12 SHOTS.  She said, 'of COURSE!'.  She said for some people the shots work better than the lozenges and she said I could get a shot right then and the nurse would show me how to do it myself in the future.  I get to do it twice a week.   It's a special preservative free shot so it comes from a compounding pharmacy.  I did notice a difference after the shot (a few hours later).  It helped my energy greatly and low-energy/fatigue is what has bothered me the most as a mom.  So we're hoping the regular shots will at least give me a day or two of more energy.

So Matt asked at the end of the appointment if she could tell me in her best estimate where I was in the course of treatment (beg-end).  She said she would be very honest so what she said wouldn't be her being optimistic or playing it safe because Matt told her that I get discouraged ALL the time about how I'm doing.  She said if my treatment were a big mountain peak (which she also said isn't the best analogy because there are LOTS of ups and downs as you go up the mountain AND down), but if it were a mountain peak, then she thinks I'm just slightly under the peak -- almost ready to reach the peak and go down.    She said I'm pretty much following the model of where they like to see their patients.  I'm not doing better than most, but I'm not doing worst than most.  I'm average.  Looks kind of like this:
It was encouraging to hear but also not because reaching the peak and going down is almost harder than going up the mountain because as your immune system is better able to handle stuff, they intensify even more your regimen so my body will be fighting a lot harder.  So scary!  Treatment weeks will be harder, but the hope is that as time goes on, those will get easier AND my off weeks will show more strength in body.  But it was neat to definitely feel like progress has been made.  Even I can see that.

So after we got everything answered and stuff, she went out to prepare prescriptions and go over her notes with Dr. J.   Then he came in (as he always does) and briefly talked to us about my treatment and was glad that things were going "according to plan" (as much as it can with Lyme!  It's so different for everyone!).

So you can be praying for the next round of new treatment (in about 4 weeks). It will probably be SO hard.  If anyone wants to come help and play with the girls, you should! :)

Keep praying for us.  It still going to be real hard....and by no means am I "better".  But we are seeing progress so it is encouraging!
Sight-seeing at Mt. Vernon (I was in the wheelchair most of the time but did stand up to take pics!!)


Wednesday, June 1, 2011

ready

I have an appointment with my LLMD on Friday.  I have to get on a plane to go to his office.  But it is so worth it to have the kind of trust we do in my doctor.

I've been feeling better the last week or so and run into a few speed bumps this week but we're hoping overall that improvement will be seen and we can move on to whatever the next "step" is in the process to recovery.

Please pray for a great appointment, safe travels (and EASY travels on my stressed body), and also a little bit of an enjoyable trip for my husband and I as we will be celebrating our anniversary while we are away :)