Tuesday, November 25, 2014

stunned

Like a one-two punch hit me in the gut.  But maybe I'm being too dramatic and I should just get over it.  In fact, I almost expected it.  Today was my phone appointment with my doctor.  Last month's first week of treatment was pretty rough on me.  Lots of almost-seizures that were saved with medication and a few seizures that slipped on through.  The second week was much better and I am improving in energy, but my "off" weeks are still lagging a bit and what was explained to me today is that in order to "graduate" to oral antibiotics, they really want to see two consecutive months of "good" off weeks.

I'm not there yet.  Not there, almost there, but - NOT there. In fact, I'm so-close-but-not-quite-there that I have to do ANOTHER month of IV.  Dr. J misinformed us last appointment that I was done.  OH how sad I am.  THAT is why I feel a bit sucker-punched.
More time to infuse are in my future.

BUT, in another way, I am SO thankful that we are treating this ALL the way. I don't want to prematurely end fighting this disease the way it should be fought.  I want to get every last ounce of fight out of this PowerLine that I can if it will help.  I trust my doctor; she is so attentive to detail and spent such a long time on the phone with me today going over really minute details to help paint a bigger picture that would form her opinion and base her treatment plan for me.  It all makes sense.  It might feel sucky, but it makes sense.  And she said she is so so hopeful that this IS the last month of IV and that when I see her in January we can move on to oral antibiotics.  That is our prayer.   But I've got to say, getting the news just made the tone in my voice for the rest of our appointment change and get more down and out.

Did I grieve?  Yes? (I might still be grieving a bit)

But will the Lord sustain us through this and however much longer we have to go through IV antibiotics?  Yes.  The first thing I did after I got off the phone was fall over on the bed and pray.  "Lord, please provide for us.  Please sustain me." And then I cried.  It's tough to go through these rounds of IV as you've heard me describe.  I'm not looking forward to Monday.  But I'm thankful for the rest of this week that I have off.  And I'll try to keep looking for the things I can be grateful for throughout the rest of the week.

"but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."
Isaiah 40:31

Friday, November 14, 2014

Like the end

I had my final antibiotic infusion last night. It has come to an end. The last two weeks of antibiotics have been so rough.  SO rough.  The first was wrought with many seizures and listless moments and two days of lying helpless in bed needing to be brought every meal and every cup of water.  I slept most of those two days or watched Netflix if my head didn't hurt at the moment.  I'm thankful for my loving husband for caring for the kids and keeping them away so as not to incite a seizure. He knew just how to care for me on those most trying days.

The second week was better in some ways because there weren't seizures, but there were other evils coursing through my body.  The IV drugs had changed and so the side effects had changed and the herxing had changed. I was running a marathon to get to the finish line. My husband kept saying, "Just 8 more infusions....", "Just 6 more....", etc.  It felt like I was swimming the English Channel. My body was so worn out. The infusions were taking their toll and hopefully killing lots of bugs and doing their worst since this is the last time we can hit them with the really strong stuff!

Finally the last day arrived.  Thursday.  Two infusions to go - morning and evening.  Our schedule was to wake up at 6:30am since my husband helps me get it started and he has to get to work. By 8:30am the infusions are done. And I'm done-in.  But I've got kids to feed.  Thankfully my sister comes that day to help and arrived not to long after I had gotten a simple breakfast prepared so I could just plop on the couch.

I was desperately out of a medicine that I needed that evening so I had to run to the pharmacy but I had no motivation or energy to do it.  My sister offered to go for me, but I had to sort out certain other medications I had to get so I really had to go.  I put it off as long as I could and then finally just went, but upon getting there realized that the Target pharmacy might be closing for lunch and I didn't want to have to kill time for 30 minutes. I had 3 minutes before what I thought would be closing time. So I spent energy I didn't have doing the best sprint a person who has no energy could do and high-tailed it up to the pharmacy line. I made it in time!  But paid the price in my poor body's energy reserve. 

Got my meds, spent, utterly exhausted - and it hit me - I had ONE more infusion to go.  ONE more antibiotic infusion to go.  I teared up and decided I deserved a celebration drink - Starbucks was on the way out of the store so I stopped for my favorite drink - a decaf Americano.  I could hardly get my order out through the lump in my throat.

All the way to the car I could feel the hot tears in my eyes. Six months of grueling misery and hard work to get to the point where here I COULD make a pharmacy trip on my own and walk without having to sit forever.  I definitely have made progress.  I still have not had joint pain.  This is the third month without it.  Praise God!  And my energy levels are up.  While not to the point where I am "normal", they are so much better than when I began this IV journey.  I'm ready for the "rebuilding" phase with oral antibiotics.  I'm ready to get stronger and get back to my normal healthy self!

I sat in the car for a minute and sipped my drink and cried a bit.  I dreaded my last infusion because they are no fun.  But I knew that it was just ONE more and then I was done.  ONE more.  I could make it with the Lord's help. "I can do all things through him who strengthens me." Phil. 4:13 I think I cried not only because of what lie ahead but because of all that lay before.  My sweet sister-in-law who is suffering from the same insidious disease and who herself is on IV treatment right now sent me a sweet reminder of God's sovereignty. It goes like this:

"Reader, if God has given you His only begotten Son, beware of doubting His kindness and love, in any painful providence of your daily life! Never allow yourself to think hard thoughts of God.  Never suppose that He can give you anything which is not really for your good. Remember the words of Paul: 'He who spared not His own Son-but delivered Him up for us all, how shall He not with Him also freely give us all things;' (Romans 8:32)

See in every sorrow and trouble of your earthly pilgrimage-the hand of Him who gave Christ to die for your sins! That hand can never smite you-except in love! 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

That sums it up pretty well. Even though this is hard and will still be hard ahead, God has ordered it and it cannot be wrong.  It's done in love and I can learn from it.  If I resist, it's futile to my benefit in learning.

So while it's not the end of Lyme, it is a cause of celebration and praise to the Lord that it's the end of "violet" the PowerLine (for antibiotics - I'm keeping it for a few more months for fluids).  

I went home, got ready mentally, and the time came.  The kids went to bed, and I hooked up to my LAST antibiotic IV.

 It was yucky, awful, terrible.  When the two hours are up I can barely move. I passed the time by watching one of my favorite shows - The Incredible Dr. Pol and by cuddling with our new kitten who
adores me to death (I needed a therapy animal and somehow she knew it).  When it was finished my husband asked, "Is there anything I can get you?". I could barely nod my head no.  I just wanted to get into bed and sleep it all off.  I lay there forever and let my eyes close.  My husband got me some water to take my night time meds and helped me to bed.

This chapter is closed.  Thank you, Lord for sustaining me.  

Thursday, October 30, 2014

blue sky-ey

We just got back from our monthly trip to see my doctor and we had been praying for good news.  There was a slight scheduling conflict that we weren't informed of until about 2 minutes before we met with the doctor, though!  Instead of meeting with my usual practitioner, we met with Dr. J.  This is not a BAD thing at all.  I am a creature of habit somewhat, especially when it comes to doctors and I love that my practitioner knows my chart and knows me, but I know she works so very closely with Dr. J, and he often stops in to say hi and see how I am doing.  So the change wasn't bad like I said.  Just surprising.  They said my practitioner wasn't in on Tuesdays.  Well, why, then did they schedule me on a Tuesday a month ago if they knew she wouldn't be in??? Oh, front desk!  Oh well, it's really doesn't matter, because my appointment went well and in a lot of ways it was great that we got to meet with Dr. J, because we got to discuss some things with him that we keep forgetting to bring up otherwise.  He's a very patient man and explains things very well both to me and to Matt.

My last month went well; really well, in fact. It was the second month without joint pain which is fantastic and this month I had a noted increase in energy.  Not enough to the point where I could care for the kiddos on my own each day for a whole day, but enough where I wasn't in bed or couch bound and was able to perform more tasks than I was able to even just one month ago.  Both Matt and I have seen a big leap in this.  Dr. J calls them "blue sky days" and asked about how many of them I had this month.  I really couldn't estimate how many as they seemed to be in spurts or moments each day instead of whole days at a time, but they were there!  Blue sky moments!  He was greatly encouraged as were we and he was enough encouraged to say that one more month of IV drugs will be it for me and then it will be on to the oral antibiotic phase. Yipee!

My next IV month will look exactly the same as last month so that means my tummy will be much settled (so thankful), and I'll probably just be worn out a lot and maybe have some headaches (but Dr. J had an idea of how to combat that and thought it may be a toxic thing going on on the brain causing them, so we'll take care of that).  I'll have a phone consult in a month and after discussing it with the doctor, I will not have my line taken out until February.  Even though I won't be using it for IV antibiotics, I will be using it for Lactated Ringer's solution which are super beneficial for flushing out toxins. I think it's basically just sodium chloride, sodium lactate, potassium chloride and calcium chloride in a fluid bag that hooks into my line - in short - electrolytes - the stuff they hook you up to when you get checked into the hospital.

So my excitement of taking a shower and a jacuzzi and whatnot...well, it'll have to wait.  I understand the benefits and I can be patient for my health.

We are so excited that this is the last IV antibiotic month and are so thankful for answered prayers about that. Thank you for praying for us and please continue to do so!  I'm not well yet and need your continued support through prayer.  We are encouraged, though, so be encouraged, too!  We wanted to share the good news!

Friday, October 17, 2014

slightly hopeful

At my last appointment 2 weeks ago, we were encouraged to hear that progress HAS been made and that my PowerLine might be able to come out in a month or two depending on how the next one or two treatment rounds go. I have just finished round one and go back to the doctor in a week and a half.  I'm wondering if I'll hear the magic words, "You're ready to move on to oral antibiotics!" or if they'll want me to do one more round of IV or even more.

You have no idea how much I want to take a shower. And wash my own hair instead of having other people do it for me.  It will feel so good.  And jacuzzis!  Oh jacuzzis!  My parents have one. I'm scheduling it right now.  As soon as this PowerLine is out, I'm going over there and just sitting there for hours. :)

It feels at least like the IV thing is winding down and that is good news.

I think the main tipping point and best news of all is that for the first time in a very very long time, I had no joint pain in any joints during treatment.  That was huge!  And this last round of treatment I didn't either so that is very encouraging.

Both Dr. J and his P.A that I see agreed to give my gut a break and take me off of the vomit-inducing drugs and that helped so much this month. It was such a reprieve.  We had thought we had taken care of all of it last month but there was one pesky drug left that left me still lurching, so they switched me to a supplement that was so much gentler on my tummy.  I was so happy.

We are praying that God is using this medicine to heal me and that I will soon be ready to be a full-time wife to my husband and mommy to my kids!

Thanks for your continued prayers!

Friday, August 29, 2014

wiped to the bone

"Chemotherapy" they said.  "You're not experiencing a breakthrough because IV antibiotics for Lyme is exactly like chemotherapy.  It tears you down and wipes you out.  You won't feel better until AFTER when we build you back up."

OHHHHHH!  My regular doctor had a family emergency and couldn't see me so I had to see another practitioner in the office who consults with Dr. J. At first I was so disappointed and I thought, "My doctor knows my case history so well!", but then I was pleasantly surprised because really, the whole office is so wonderful and they all work with Dr. J and he was there that day and the practitioner I saw consulted closely with him especially because I'm an IV patient and she was well-versed in IV stuff.

I guess no one remembered to tell me that I might not get a "breakthrough" on IV treatment.  I have been waiting for one, thinking maybe around the corner of THIS or THAT month I'll be able to get up and take care of my kids instead of relying on the every day help of family members who drive to our house and get my kids up and feed them breakfast, lunch and snack until my husband gets home for dinner.  So it was actually a blessing in disguise that my doctor wasn't able to be there because to hear the words, "just like chemotherapy" helped me understand.  It's okay to feel this way.  My body is supposed to be feeling this way.

Is it fun?  No way.  Does it suck?  Yes sir and ma'am!  I can't begin to describe the suffering I am going through and the ripples it creates throughout our family and our extended family.  But we are thankful for the help and we just have to find ways to be thankful for the suffering because there is no other way to be during this time or else we'll fall into a pit of despair.  It's so easy to despair when you feel this and when it seems like there is no end in sight.

There was talk at my appointment that I MIGHT be able to get my line out in 1 or 2 months.  I remain hopeful but skeptical.  It's hard to think it will happen when I feel so awful.  But we'll see what my doctor says at my next appointment in 5 weeks.

Now I know my body is supposed to feel awful because of IV meds, but it isn't supposed to feel quite THIS awful according to blood work.  I was tested for ammonia levels and mine were quite high.  That can contribute to seizures and overall general bad yuckiness.  So I will be going on a supplement that should lower the ammonia levels and hopefully help with seizures and stuff.  They will be monitoring my blood levels for ammonia and we'll see how the supplement works.  They've had lots of luck with it in other patients so we think it will work.

Because of how bad I'm doing, I am to take a two week break from antibiotics and just focus on detoxing and resting. Then I'll resume treatment full force.  They've changed my regimen slightly to help me not throw-up so much and help my tummy not be so unsettled.  Oh, I'm so thankful.  I came into the appointment and said point blank, "I came in prepared to beg Dr. ____ to take me off of this med and this med and this med because I'm throwing up and so nauseous all the time."  The other practitioner said, "Fair enough, fair enough.  I'll ask Dr. J.  That seems fair."  I was surprised.  They DID take me off of most of the meds that seem to make me nauseated but kept me on one of the worst ones.  But I'll take a reprieve from even ONE.  Anything to make the days less sicky.  Feeling run down and hurt and awful is one thing, but then to add vomiting and nausea to it just adds a whole other suffering dimension to it that is hard to explain unless you've been there.

So the appointment as a whole went well I'd say.  I'm resting as of now and biding my time until treatment starts up again.  I wish I could say I felt well off treatment but that is just how IV works as they told me.  I'm not going to feel well yet.  And it's good to know that.

Thanks for your continued prayers for our family as we navigate this rough time!

Monday, July 7, 2014

in a state of calm

So I finished IV treatments for this round last week. Whew!  Doozy.  It was A.W.F.U.L.  I'm dreading the next round.  But for now I'm in the eye of the storm.  I'm only on oral antibiotics and have 3 more days of them until I get about a week and a half off to let my body relax a bit and then a phone appointment with my doctor to re-hash this last 4 weeks and then re-group for the next 4 weeks which might be more intense than the last.  Oh boy am I afraid.  But I need to not start getting ahead of myself and need to stay in the present.  One foot in front of the other and enjoy the little joys of each day.  My kids do provide plenty of those!

We had a fun 4th of July.  I sat back the whole time while we had family over.  They did everything - prepare food, take care of kids, provide fun.  Still, it was taxing on my body.  I had fun, I stayed mostly immobile, and while I wasn't incapacitated by seizures or nausea, fatigue and weakness were there. You can see it in my eyes:
It's a disease that's hard to explain to some people because a lot of the time we don't LOOK sick.  We look like we probably feel okay.  Unless you're there in our most utter awful moments, we look like we could be you.  But I've reached a point where I do look pretty bad.  I walk slower, shuffling at times, and I am still having seizures.  The doctor upped my seizure meds last appointment but it hasn't seemed to slow them.  They haven't increased which is good, but they haven't decreased which is kind of disappointing. I have two kinds of seizures - one, the kind where I flail (the typical kind you'd see on tv or movies), and one where I pass out for up to 3 hours--that's my record--then groggily come out of it.  Matt has to monitor my breathing and make sure I'm fine, giving me seizure meds even though I'm completely "out" (he puts them under my tongue where they dissolve very easily and absorb and go to work).  It's scary, folks, but the doctors are aware and know fully what they are doing and are keeping close tabs on me so we don't feel alone in this.

Getting fanned by a fallen palm frond by my bro
It's not hard to be off of my feet. It used to be.  It used to be hard to sit and watch and wait and see things that needed to be done.  Now I sit and am SICK and can do nothing but BE sick.  My body won't let me be anything but sick and my mind won't let me be anything but sick.  My mind is focused only on helping my body not fail completely most days.

My kids are here at home with me, but are taken care of by others.  They come over to me for loves and hugs and to say "I love you, Mama" or "We prayed you would get better last night, Mama".  It's a tag-team effort.  Right now my cousin is in town and does so much of the daily work of caring for them and for the house (Matt does a lot of the house stuff too!).  Then on top of that, I have one sister-in-law coming on Mondays, my mom coming on Tuesdays and Wednesdays, my sister coming on Thursdays, and my other sister-in-law coming on Fridays.

There's something irresistible about a little boy
and a sparkler :)  Especially MY boy :)
I've had seizures when they've been here, I've also been awake and alert when they've been here and able to direct them as to how I'd like things done or where things put.  We've been slowly moving into a new place since our move across the country so it's been a transition!  A very slow one.  Imagine a regular move and then imagine one with someone who is very very gravely ill.  It takes more than double the time to get unpacked and put away because there are just so many hiccups along the path.  Things are coming together but it really is just taking a while.  My husband is a huge help and he is trying to make our home a place of peace for me and all of our family helpers have tried to do the same when they come over on their allotted days to help.

The 4th of July was fun, and even with all of the sitting back and resting, my body still paid dearly for all of the fun I had not doing anything much at all except observing and laughing and enjoying myself NOT exerting myself.
The fireworks display as seen from our house
The day following the 4th I had a big seizure.  I always wonder, "Was it worth it?"  It usually is.  Fun with family usually is worth it.  And to keep it real, so you know that I don't always look like you or you or you, this picture was taken after a seizure - I'm not excited to share it, but I think it's important that people see that Lyme causes awful things to happen.  This is what I look like after a seizure:



Over on the right-hand side there, you'll see a fundraising site that my brother and his wife and a friend from their church have put together for us.  We thank you so much!  We just are blown away by those of you who have given to us already and so grateful!

I'll leave with this:
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12


Sunday, June 29, 2014

out of the fog of nausea

This past week was one where I didn't know which way was up and where I sucked on pineapple popsicles til my tongue hurt.  One particular IV med I was on causes severe nausea and even with multiple anti-nausea meds, the nausea was barely contained all week.  It was miserable, awful, sorrowful, pitiable...

But then this:

"the God who equipped me with strength and made my way blameless.  He made my feet like the feet of a deer and set me secure on the heights.  He trains my hands for war, so that my harms can bend a bow of bronze.  You have given me the shield of your salvation, and your right hand supported me. And your gentleness made me great.  You gave a wide place for my steps under me, and my feet did not slip." Psalm 18:32-36

and this:

"Now may our Lord Jesus Christ himself, and God our Father, who loved us and gave us eternal comfort and good hope through grace, comfort your hearts and establish them in every good work and word." 2 Thessalonians 2:16-17

And look as this gem my aunt found.  So fitting right now and I'll leave it at that since I'm pretty weak still:

"The highest result of prayer is not deliverance from evil, or the securing of some coveted thing, but knowledge of God… “And this is life eternal, that they should know Thee, the only true God"(John 17:3)…" --from The Kneeling Christian

Tuesday, June 24, 2014

done in

It has been so tough.  But my prayers have been that these tough days and yucky feelings will be accomplishing much to rid my body of Lyme and let me get back to a place where I can be a mommy again.  We've got the first 4 weeks under our belt.  Boy, what a learning curve that was!  Thankfully we had my sister-in-law and brother-in-law to help us along when we had no clue what to do in certain situations.  I'm sure they thought we were nuts sometimes but we are so grateful for their help and knowledge since they've walked this path before us and now are currently walking it again!

This is what my line and dressing looks like:
The dressing can't get wet because if it gets wet, the skin under the dressing (which is sterile), becomes compromised and is no longer sterile.  Therefore, showering becomes a problem.  At our first appointment they told us to use Glad Press N Seal.  I said, "You mean you just stick it on and you can hop in the shower?"  Yes, they said.  "And the water can just run right on you?" Yes, they said.  "And it's fine?" Yes, they said.  So that very first night my hair needed to be washed.  I put Glad Press N Seal on and it looked as though it would hold, hopped in the shower, and washed my hair.  Got out and inspected the dressing.  It held up well EXCEPT for the side.  OH MY...I panicked.  It was wet.  The Press N Seal had failed me.  It was time to put Matt to the test in his dressing change skills (after the dressing is compromised it must be changed immediately to keep the site from infection).  Matt did very well, by the way.

Anyhow, after that experience Matt emphatically told me I was no longer allowed to shower.  Telling that to a girl is like telling a pig they can't wallow in mud.   Spencer and Melody (bro and sis-in-law) told us about this handy device:

and let us borrow it - it attaches to your bathroom sink (or any sink) and works really well while sitting in a wheelchair, but any chair will do.  Matt washed my hair for me.  When it worked, he wrapped the towel around my head and said, "Go buy it on Amazon now."  So it's bird baths and Matt washing my hair for me until my PowerLine is out.  I've gotten used to it.  Some days my hair is funkier than I'd like because Matt doesn't have time to wash it so I go an extra day or two between washings but I've gotten used to large head-wrap headbands and just not caring because, really, all I can care about these days is surviving.

We have begun the next 4 week segment of my treatment and boy is it already rougher than the last.  I'm only a day and a half in and I can barely move.  Thankfully I have help at the house because I couldn't get out bed this morning without assistance, so getting the kids up and getting them breakfast wouldn't have worked if I was alone.  

Please continue to pray that God would use these IV meds to rid my body of Lyme and get me back to stellar health.  My family needs me back into normal health and I am just so ready to be well again!

I've had the sidebar updated with ways to help for those interested.  Most of all we covet your prayers.  We know those go a long way!


Friday, May 30, 2014

IV'ed

Wow.  I've nearly added one week of IV antibiotics under my belt and I've been womped pretty hard.  I'm taking oral antibiotics congruently so that doesn't help how I feel either, but WOW.  IV is a whole other ballgame.

My eyes are sunken, I can barely walk, I'll think of something I want that is just out of reach and then decide to just wait because it's too much energy to sit up and reach for it - whew!  This stuff is potent; and that's good!  But I hate it at the same time.

So some people name their IV line.  It helps them through it or something.  I thought I wouldn't, but then a name popped into my head and it fit perfectly and it bonded me to my line and made me LIKE it more than I ever would and endeared it more because I have sort of been scared of it this whole time.  I shall name it Violet.  It's purple so it fits. It may sound silly to most of you, but to those of you who have had PICC lines or PowerLines or Ports to receive antibiotics, you know how much it helps to have that name that makes you love the thing that is helping you get well. I'm not batty.  I'm crazy, but not batty, all you friends out there.  Don't worry, I haven't crossed over.
The procedure itself was not what I expected.  "Conscious sedation" was something altogether different than what I imagined.  I was very much aware of everything they were doing when inserting the line.  But I was sedate.  So there you go.  Just what it says - conscious but sedate.  Then off to the clinic we sped to make our appointment to learn how to change the dressing and also test dose the medications and lo and behold all of this was just too much on my poor body and I ended up having a mega seizure right there on the exam table.  Passed out and everything.  My husband said they got really worried, but after some very special medication was pushed into my line, (and after I had already maxed out on my regular seizure meds), I came to and things got normal again and calm.  Scary times.  Seizures are never normal for us and never not scary. But the rest of the weekend we spent in DC went fine as I recovered from the procedure and Matt is prepared to be my nurse.  Interestingly enough, 2 nurses I had in pre-op had Lyme disease and my surgeon had Lyme disease 13 years ago and said, "We're rooting for ya!".  It's prevalent, folks!  It really is!

Life is hard hard hard right now.  We are still in-between houses.  We finally closed escrow and are painting our new house.  "We" is my husband and my siblings (SO thankful for them!). I sit and watch.  My mom and dad babysit our kids.  We are so grateful for everyone helping.  Once the painting is done (maybe this weekend?) we can move our stuff in and finally be done with our very haphazard living situation we're in.  Things will calm down.

And I get help!!  My aunt is sending my very mature nearly college age cousin to come stay for a couple months to help with the kids.  We are so blessed and God is taking care of us.  And we have help from my sister who will come once a week to relieve my cousin, and help from my two of my sister-in-laws, and my mom gets to come for 2 days a week and offers from many others.  I will say yes to whoever I can that will be helpful and not harmful to my health.  We need any help we can take at this point.

My dad accompanied me to my son's well check appointment which helped immensely. I couldn't have done it by myself.  I can barely walk for goodness sake!  He carried my son and did everything that needed to be done for my son (my son LOVES his Appah!). I had the worst memory problems there filling out the forms, but made it through so I'm so glad I didn't have to wrangle a child AND fill out forms.

God's grace and goodness are abounding through this trial and we pray and hope that these IV meds are what will get me back into perfect health!  Thank you for praying for me!

Friday, May 2, 2014

ready

It's taken me a bit to digest the information I got at my last appointment. I was in bad shape. Afternoons are really bad for me.  Mornings are good. I sometimes have a pep in my step even!  Then as the day wears on I sink lower and lower and lower until I'm reduced to shuffling along (if I can walk at all). I can barely manage a smile.

Lately, though, through tough news, I'm thankful for the late night laughs my husband and I have had.  They've been much needed.  Laughs about ridiculous things. I think we both just are punch drunk and delirious with overwhelmed crazy information overload that things that normally wouldn't be funny become hilarious to us and we lay on the bed laughing til we cry. Thank you, Lord.  Laughter really is the best medicine.

But back to my appointment.  I was thankful in a way, that my appointment was in the afternoon, because then the doctor could see me at my worst.  Not that they don't take me seriously; in fact, they are the kindest doctors I've ever encountered.  They believe every word I say because they've seen it in countless patients and they fight for us.  Another huge blessing and thing I'm thankful for - doctors who fight for a chronic disease that most doctors gloss over or decide doesn't exist.

See me at my worst they did.  It was meant only for my main doctor to see me but the big guns had to be brought in. She brought in Dr. J.  They conferred.  We discussed.  I was laid on the exam table because of all the shaking that was happening in my body ("we don't want you to have a seizure") and the lights were dimmed.  I had to lay there for an hour and a half before I was cleared to leave.  I was actually fine with this.  I was so so so fatigued and worn that my body needed that dark room and table to recline on.

Before the exam table we discussed things.  We discussed the last 4 months; symptoms and such.  I had
trouble getting words out.  She could tell I was having trouble.  When she "poked and prodded" me (her words) as per the usual exam, my body did all sorts of weird things I couldn't control.

My body is not mine - it's Lyme's.  Clearly I'm not winning this war.  If ever I was, I'm not anymore.  And after very careful thought and deliberation it was decided that I need to go on I.V antibiotics.  Funny enough, in office, I was so very calm about this decision.  I was pumped up about it.  I was happy.  Yes, a single, sad tear slipped down my cheek as she said the words "I.V treatment".  The lights were dimmed so I don't know if Doctor saw it.  But overall, I knew this is probably what my body needs to get over the hump of not being able to get better.  Dr. J came in to discuss it with me too and we both agreed - I'm TIRED of being sick!  This is what is needed, no doubt about it.

It WILL be rough.  Rough in so many aspects, not just on my body but on the family, on the finances, on those around me who have offered to help.  Lyme affects so many without people realizing it.

But here are the truths - the things that make me sit up straighter and breathe easier when I'm up late at night fretting:

-I.V wasn't mentioned until we moved to where we are surrounded by family of all different kinds - parents, siblings, etc.  We have a great support network.  Even friends have offered help.  People we hardly know have offered help!  God's hand in timing this is so evident.

-All money is God's.  It's all His.  So why do we worry?  He will provide for our needs.  Doesn't mean it won't be slim and hard, but we need not worry for He cares for us.

-God will be with me through the toughest parts of treatment.  He's been with me through the toughest parts of oral antibiotic treatment and He won't abandon me now.  The scary thoughts of "what if" and "what is it going to be like" dim when I dwell on His presence.

-We already have offers to help take care of the kids that should span the hours of my husband's work schedule so that I won't be left alone with them (seeing as I have fainting spells and seizures at any given moment....something the doctor is working hard to remedy before I start I.V, but things change with new I.V drugs so we'll see!).

So, all of this is set to start in a few weeks!  It is all happening very quickly and moving at such a fast pace that I can hardly contain my thoughts sometimes.  But prayer and snippets of God's Word helps.  It's hard for my brain to be able to sit down and read large passages of any kind of book, but I do find it comforting to go to the Psalms.  They seem to be the perfect length for an overworked/overrun-with-Lyme brain.

"I will rejoice and be glad in Your loving kindness, because You have seen my affliction; You have known the troubles of my soul, and You have not given me over into the hand of the enemy; You have set my feet in a large place." Psalm 31:7-8
The clouds on the flight home


Saturday, March 8, 2014

exposed

Dirty closets.  Literally....

We are moving.  It happened SO fast.  Moving from the middle of America to the coast of America.  You know what that means?  It means moving from a BIG house to a little house.  So naturally, as I lay on the couch unable to even care for my own kids, my mind races thinking of all the things needed to be done before the movers come to pack up the place.  So much purging must be done!  I don't want to arrive at a smaller place and have to live in cramped quarters. I'd rather get rid of it now and breathe easier when we get there.
But it poses a problem because as I said, I can't even care for my own kids.  So how can I methodically go through my house and purge?

(Side note for those of you that don't know or don't remember - my mom has graciously moved in with us and is taking care of the kiddos for the majority of the time until my husband gets home from work each day and she also cares for me!  How grateful we are!)

There was a good day a week or two a go when my mom took all the kids out to the zoo and I decided to purge the toys.  That is something that can't be done with kids around.  I was running on adrenaline and once that was done I decided that I could conquer the girls' closets.  Which I did.  I paid for it dearly, though.  The next day I had a seizure, passed out for most of the day and it was just an all around bad, scary day.  My husband was scared and has been oh so careful with what he'll allow me to do since then.

So enter my bff.  She has been so faithful to pray for me and step in when things are needed.  She doesn't know anyone with Lyme disease but she sure knows how to care for someone who has it.  She just brings a meal at the right time, takes the kids at the right time, comes up with great ideas for how to help at the right time....it's been wonderful.  She's also a great encourager.  That's something every Lymie needs.  I gets notes all the time and encouraging sermons she's heard that she'll pass along, etc.

Well, she heard that I've been fretting and getting anxious about this whole purging thing.  So she set up a babysitter for her own little one and then came over to help me go through a couple of closets with me.  I honestly thought we'd only get through the linen closet and I was happy about that because the other closet to go through was in my room and my room is a mess.  And that closet had who knows WHAT stuffed in it.  I was scared to let her in.

But she KNEW what to do.  She set up a chair and made me sit.  I wanted to do more but she wouldn't let me.  She had me say what to keep and she put it in a pile and she had me say what to give away and she put it in a pile.  Then she folded all the "keeps" and put them neatly in the closet.  She MADE me just sit and watch and not lift a finger.  She knew my body would pay for it and she wouldn't let it happen on her watch.

Then she said she had time for one more task so we looked around and tackled another semi-big project and again she made me sit and bark orders while she did the heavy lifting (and it really was heavy lifting because it involved books!).

What a wonderful friend! I find it's so hard to make the kind of friend that you feel comfortable around enough to be sick around.  She's seen me have a seizure.  I seriously thought she wouldn't want to be my friend anymore after that.  I know it's ridiculous because no one is that shallow, right?  But I was super embarrassed. It's a vulnerable thing to have a seizure in front of someone.  But the next time I saw her she just brought it up and said something along the lines of "I'm praying for you and don't think anything is weird between us" or at least something that made me feel that way.  That's what you should go for.  I'm really going to miss her dearly.

We had a sleepover the other night because her husband was out of town and my husband felt comfortable letting me go hang out overnight there since she's so comfortable with Lyme.  There was no pressure to make it "fun".  We just sat, laughed at her little baby son's antics, sat some more, watched a really old Disney movie, and made decaf affagatos then went to bed.  She gave me HER bed.  The comfy one.  She took the guest bed.

She prefers OTHERS as more important than herself.  She lives out Scripture.  She's the kind of friend I hope to keep forever (we already are in cahoots to plan a way to see each other in December maybe).

Everybody needs this kind of local friend.  Especially a Lymie.
All of these pictures were taken when she and I went to the Dallas Arboretum; a trip where we had to cut a lot of fun things off because of how I was feeling.  But she was so kind and so loving and really understood!

Tuesday, February 4, 2014

industrious

I'm well enough to work with my hands.  That is a feat.  And I'm proud of it.  I'm selling these bracelets. If you or anyone you know of would be interested please pass along my shop info because all proceeds go to helping pay for my Lyme treatment.  Thanks!!

They really don't have to be birthstone if you don't want. You could fill them up with green stones and make them Lyme bracelets!!!! :)



Tuesday, January 14, 2014

guilty

There's this sense of guilt when asking for help.  You know?  Especially when you don't LOOK sick. But you have to get over it.  The pride for me is what gets in the way.  What will people think of me?  "She walked yesterday; why is she in a wheelchair today?"  "She went to that friend's house yesterday; why can't she come to mine today?" Fear of man, fear of what people will think.  Get.over.it.  I have to tell myself that all the time.  SO many people want to help.  Let.them.in.  I repeat that too.

Well, this is a half-tribute to my mom too.  I can't speak for her, but I can imagine how she might feel.  She came here to help me.  My mom - she already raised 4 kids and now she's here semi-raising my three. Sometimes I wonder if people are thinking, "Well, her mom is there to help, why would she still need help with chores or with the kids or with...."

Here's why - My mom works so so hard.  Anyone with kids will know that caring for kids is hard!  She gets them up, makes breakfast for each one, puts them in high chairs, wipes faces, drives one to therapy some days when I can't, then makes breakfast for ME, does the dishes - that's all before 8:30am, mind you - then it's interference time.

An almost 4 year old and an almost 2 year old need interference-running all the time.  And teaching.  We are teaching them to be kind, godly little ones.  We trust my mom with that.  We don't trust just anyone with that.  When I'm able, I do it, but when I'm not, she does.  And do you know how exhausting THAT can be?  Our almost-7-year-old needs godly input too.  She's not done learning.

Then it's lunch time.  Make lunches, high chairs, wiping of hands, etc.  All over again.  Picking up little girl from therapy.  Then it's bliss time - adult lunch while kids play upstairs where we can hear them and they watch a movie.  But my mom doesn't get to rest -- she has to make MY lunch, make sure I'm not about to have a seizure, etc.  Then it's nap time.  For EVERYONE.  Well, "room time" for the kid that doesn't nap.

By the end of nap, I can see my mom is getting tired.  Then....THEN, she works.  Did you know she works?  She gets to work from home thankfully.  But she has to work part-time.  I remember the days I worked from home and raised ONE little one.  I was exhausted all the time.  But my mom does it somehow with three kiddos who aren't even her own.

Matt makes dinner when he gets home and while my mom works, but if she can, she runs more interference during the "witching hour" at our house -- that hour and a half before dinner when every kid becomes a little Tasmanian devil.  At bedtime, she even will take a break from her work (that sometimes is not a good idea to break from) to help put the kids to bed so that she can help her son-in-law.  She is so sacrificial.

Somewhere in all that we manage to get laundry done. It helps to have two little who know how to put laundry AWAY.  But the washing and folding is still a one person job (unless I'm having a particularly good day and can just sit on the bed or couch and fold).
(Source)

So what does that leave?  It leaves housework (which gets done when it can by...you guessed it...my mom), lawn work (Matt is exhausted from work, making dinners, and worrying about me/caring for me at night), and general other house stuff.

There.  There is no guilt in it.  Help is needed and we've already seen it generously pouring in.  Thank you to those who have helped.  Thank you to those who have tangibly helped and encouragingly helped, and most of all, to those of you who are PRAYING.  We don't give up on praying.  Keep it up, please!

Time to rest.

Monday, January 13, 2014

sorry

I never wanted my kids to see me have a seizure.  My husband was always good about blocking me from view or calmly telling them to go play upstairs.  I still am not positive they HAVE seen me have a seizure, but I know the girls (who are both old enough to talk) both know something is up.

Last week my oldest daughter said, "So, if you have one more seizure we aren't going on vacation?"  I don't even think she knows what a seizure is, but she knew it might ruin our family vacation because she overheard Matt make that comment in a moment of desperation.  In private he said, "So when do we decide to cancel vacation?" as I lay there sweating and immobile after a particularly bad seizure only days away from departure.

It's hard to have kids and be "scary" sick.  Before, I could just lay there and smile when they came up to me.  Now I have to hide. Or at least that's how it feels.  I don't want them to see the weak, sickly mommy, plus, their noises can make me sicker!  So instead they just know I'm up in my turret hiding away and fun Grandma gets to care and play with them.  On good (or let's say "better") days, I use my oldest as a messenger sometimes.  She comes in to the room every once in a while and kisses my hand and lays her cheek on it affectionately like a dog might. (side-note -- can anyone please convince my husband that a dog's presence might help comfort and heal me *wink*).

I'll relay messages to her.  "Will you tell Grandma that I need a quick snack?"  She runs helpfully and joyfully.  I think she WANTS to help.  She's old enough to know that I desperately need to get better and she wants to help save the day.  "Will you tell Grandma that I need water and fast!"

She ran. A few minutes later my daughter was carefully walking into my room. Carefully because, in her hands (it required both), was a beer stein, heavy and brimming with water, threatening to spill over the edge.  "It was the only glass I could find."  I wondered why she didn't tell Grandma.  "I could do it. I wanted to get you water. Here it is"  She smiled so cheerfully and so satisfactorily.  There was even a straw in it.  It made me want to cry.  She sees Daddy put straws in glasses of water when I am having a seizure. It's the only way to get water in sometimes. 

I feel sorry for my kids a lot of the time.  I go in and out of knowing for certain that God has me in this place and KNEW my kids would have a mom like this.  There's no reason to feel sorry for them.  They don't even know any different and they are HAPPY kids.  They love life, and they are learning to love God.  They see us pray and trust and isn't that what we are here as parents to teach?  

But there are days that sometimes turn into weeks of feeling sorry that they have to see their momma like this.  Especially the younger ones who just want mom to come give them a pony ride.  "Are you SICK or are you just resting?"  my middle child asks a lot.  She thinks both are bad, but she hears those terms a lot.  Sick.  Resting.  "Don't close your eyes, Mom." She says that if I'm downstairs in their company.  Funny, because her older sister said the same thing at that age before I knew what was causing me to be bedridden.

I know I shouldn't feel bad.  I shouldn't feel sorry.  God did ordain this time and He made little minds to NOT comprehend the magnitude of an illness like this.  They can hear "sick" and "resting" and maybe have a bit of fear, but it's not the fear we adults have.  And I'm thankful for that.  And I need to keep reminding myself that my kids are blessed to be in this family.  Some day they will see that Mom and Dad never stopped trusting God throughout tough times.

And I need to always keep that picture of the overflowing beer stein in my head.  A joyful face.  My cup overfloweth.


Friday, January 10, 2014

deceitful

Not in the sense that I'm trying to lie.  But I will tell you what - so many...SO MANY people ask me or ask us "How are you doing?"  They know our situation.  They know I'm having seizures...on OFF weeks.  I'm not even killing bugs and my body is going haywire.  It's just so overloaded I can't detox enough.  My seizure meds are at doses through the roof.  And they are helping, but just not enough.  We are in constant communication with the doctors.
This might be how I look
 The deceit goes like this:

*"How are you guys doing?
"Well, we're not doing great.  We're scared." We're terrified!  We are at a breaking point.  Heather cries often so ready to give up.  She begs to go home - to her heavenly home.  That scares Matt.  He wants to take her pain away.  He wants to take her place. He wants to be able to fix her.

*"How are you feeling?"
"I'm not having the greatest of days today" I'm suffering; so much that you wouldn't be able to grasp it.  I'm in pain/I need encouragement.  I can't think straight and my mind is foggy so I'm sorry if I have repeated things or said things that offended you.  Hurting you is the farthest thing from my heart.  Alienating you is too, that is what I answer simply.  I WANT to hold on to my friends!
But this is how I feel


*"How can we help?/Is there anything we can do to help?"
"Well, it's hard to think of something now, but we'll let you know." Oh how we'd love a meal but we have allergies and have to be so careful.  If you understand gluten-free then yes, but how can we just ask you that.  Most people do not understand gluten free cooking and Heather will get very sick if she has even a little gluten.  
Heather would love to get out of the house sometimes but can't drive a lot of the time.  But that can be hard to schedule because each morning/day is different for her.  Matt would love to get out and spend time with a guy friend.  Heather would love someone to take her to run a few errands she can't just send Matt or her mom on.  Heather's mom would love a break taking care of the kids but Olivia has some special needs.  You have to follow a schedule.  Not hard, but how do we just tell you these things when you have family of your own?  These requests and needs are not ones that would be easy to ask of just any friend.

"How can we pray for you?"
"You can pray that Heather will be encouraged daily by the Word even when she can't read.  That she will be encouraged by friends and not feel alone.  That Matt will be encouraged by the Word and know how to encourage Heather best.  You can pray that the kids will not be afraid or scared.  They sense something is wrong and notice that mommy is in her bedroom all day.  You can pray that Heather won't be lonely.  You can pray that tangible encouragement will bless her from all angles. You can pray for Heather's mom that she will have the stamina to keep up with caring for the kids.   You can pray for Heather's Dad as he is separated from her mom that they will be able to connect though apart and that God would provide a way for her Dad to come visit more often to see his wife."  There is no deceit there.