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