grateful

I've been silent - so much has happened since September! Part of it was me enjoying being more mobile, having more energy, and living life. Part of it was relishing a joyful surprise, even though it physically took a toll on me - I was just so glad it wasn't Lyme ailing me.

But in the last two weeks, our family has suffered much sadness and I have been afflicted with what was a "fluke" (named by my doctor) series of medical incidents.  And I've been forced to spend a lot of time back on the bed and couch out of necessity to heal up properly before I can get back on with a more active lifestyle that I had started to really become accustomed to again.

Back in September, we were blessed with the news that I was pregnant.  Our whole family was so excited and we all couldn't help but wonder what this surprise of a blessing would bring next year.  I was struck immediately with quite intense morning sickness...or really "all day" sickness which is quite typical for me when pregnant.  But despite all of the throwing up and generally ickiness of feeling that way constantly, this time was so much different than my other ones because I actually maintained so much energy.  We have been so pleased with how it appears I am really recovering fully from Lyme disease and I don't take a day for granted.

Even that numb area on my ankle and foot cleared up finally, just as my Lyme doctor has predicted.  It was great to finally be rid of that neuropathy! We enjoyed a family road trip and camping that was so very refreshing, especially with all of the Fall weather! I also got to take a short little trip with my husband which was so fun since it was just him and me.


And then - I went in, yet again, for another routine OB checkup, and nearing the 2nd trimester, baby had no heartbeat.  I've got a handful of babies in heaven, but this time was only like one other more than 6 years ago where I was a bit farther along, AND, my body didn't do what was in its nature, and I needed surgery to take care of things.

The surgery went as planned and I'm so thankful for a wise doctor, because I went home that day and began to recover, only to wake up about a day later and be in very intense pain. My OB told me to go to the hospital immediately because the pain was in my lower abdomen and after surgery, this was not normal.  The pain was so awful that I couldn't walk and had tears streaming down my face for hours as they tried to manage it and figure out what could be wrong. I had been told many years ago that my gallstones were the worst pain I would experience - I guess they didn't count on this happening to me, because this was by far more painful.

It was finally determined that I had an enormous blood clot in my uterus - most likely due to a clotting problem that I never knew I had.  I was taken into surgery and SO much blood was removed and my pain was relieved.  But this was the 2nd surgery within four days and no body just rallies immediately back from that.  I spent one night in the hospital so they could observe me and was able to go home the following day. I tried to rest as well as I could to fully recover, but after just one more day at home, I woke up in pain once again.

I called my OB immediately and was told to come into the office.  What could possibly be wrong this time?  My OB has so many years of experience and said that this was something he had never seen.  After examination and a test, he could see a lot of blood on top and behind my uterus.  He said he needed to go in and figure out what was going on.  He said this had nothing to do with my miscarriage or the blood clot.

I was rushed into surgery yet again, this time a bit more invasive and he found a ruptured ovarian cyst as well as another semi-fixable issue.  After surgery he was so kind and said this was like lighting striking and he really hasn't seen anything quite like it, because all three of my surgeries that happened within days of each other were not really related and most definitely a "fluke" kind of thing.  I was so happy to be out of horrid pain.

I spent extra time in the hospital to ensure that I was really on my way to healing this time and went home with strict instructions to ONLY rest and taking small walks as tolerated.  It would be a slower and more painful recovery.

I'm thankful for the encouragement that God provided, both through His Word, and through our friends.  We were immensely grateful to those that visited us in the hospital and stayed to encourage even though I know it must have been a bit uncomfortable as I was really having a rough time, even after the surgery due to some recovery complications. We relished those prayer times with people who cared for us.

Now, readers, you might wonder how or why on earth I could be grateful right now when such sorrow and pain has afflicted us recently.  Yes, our whole family mourned and we are moving forward with a little bit of heaviness weighing on us.  It was extremely sad and so many family dynamics needed to be cared for as it related to everything that happened.  But God has been so faithful to really put joy and gratefulness in all of our hearts despite the moments of sadness.

I'm thankful for little things like the continuing overall health that I still have - that I'm able to take my kids on walks without getting fatigued.  I'm grateful for resilient children who have bounced back and adapted so well during this season.  I'm thankful for a devoted husband who loves me so much and cared/cares for me when I need it most. I'm also grateful for more profound things, like God's faithfulness to supply and sustain us in our endeavor to endure. I'm so appreciative of Christ's death on the cross, because not only did it purchase ME, but it purchased my ability to endure hard things.  I could never do it on my own.

"If we endure, we will also reign with him." 

2 Timothy 2:12

The energy we have to endure is supplied with the strength God provides us, and this is the reason I am able to be grateful for so many things right now during this (hopefully short!) season of hardship.

Well, I must get back to resting up and healing.  I do hope to still write, but I'll confess that being more active has really taken me away from having much time to sit in front of the computer.  This is a good thing!  The game plan is to continue on with finishing up my Lyme treatment and praying that it won't be too much longer.  But I'll tell you - it thus far has been so much easier than it ever has.

Happy Thanksgiving!

out of the ashes

Too afraid to write about it, for fear that my health would somehow decline if I spoke the words, I've stalled writing about my appointment with my Lyme doctor in August.  But as always, this is silly.  I'm not superstitious; also I think part of it was me enjoying the news I received and just how good I've been feeling.

Just went on a 2.7 mile hike and was
fine!  I'm beginning to enjoy
camping again!

Let's talk about my foot first of all. As of this week, I'm officially "graduated" from physical therapy and plan to do a lot of the exercises at my local gym to keep in shape in general since I know how much exercise my body can handle and to keep my foot moving to hopefully re-fire all the nerves down there.  The size of the numb area has shrunk in the last week and a half which is really good news!  According to my Lyme doctor back in mid-August, it is quite common to have numb areas in the foot or toe in Lyme patients.  The receptors in your brain have a ways to travel down to your foot and they explained they see this quite often.  Probably my nerve/s got ticked off in some way back when the numbness first set in, and the doctors believe that with continued exercise, the nerves will "re-fire" - they've seen it happen.  And as of this week, I can say that I'm beginning to get feeling back.  Not 100% yet, but it looks as though continued PT and exercise will bring back feeling.  I have 100% mobility, so that is not an issue.  My physical therapist measured mobility on my last day and compared it with the first day and my goodness!  I had nearly zero mobility and a lot of weakness in that foot and today I'm at normal levels.  Praise the Lord!  Thank you all for praying and please continue to pray that the numb area will completely vanish.

Lake camping, and enjoying the energy on this trip that
I don't normally experience.

At my Lyme appointment, I got some great news - I've been tapering off a lot of my "supportive" meds and I'm nearly off of all of them.  In fact, in a few weeks, I should be down to a very bare minimum and just on antibiotics, pulsed every 3 weeks.  For the first time EVER at an appointment, when asked about my energy levels, I answered that they were very good (on a scale of 1-10, where previously I have always been saying my energy level is a 2, this time I was able to say it was a 7 most days).  Of course, it is variable depending on what is going on and I am still a bit protective of my energy stores and do parcel out each week what I know I can handle.  But this is such a huge improvement.  I still have not had a seizure for 9 months now, and I'm off my seizure meds completely.  A physical exam showed that I am just so much stronger now and have improved so greatly since April.  This was enough for my doctor to declare that there is hope that I could be completely off of antibiotics in 6 months-year.  I am always cautious as Lyme&Co can always be unpredictable, but I am more hopeful than I have ever been because for once in a very long while, I'm steadily rising with consistent gains and not losing ground in my battle to fight the disease.  Fighting Lyme&Co is not a sprint - it's a marathon, and it's been the longest, hardest marathon I've ever run. But I'm here to tell anyone struggling that there is hope - it may have taken me a while (and a lot longer than I wished), but I'm really kicking this disease...FINALLY.  God is good - ALL the time - even when I was lamenting in my sickest days, He was good.  And now that I am rising, He is still good.

After my appointment - good news
makes me smile!

Another thing to add about my appointment was that I had brought with me some blood work that had been done at my ER visit for my foot - a test that took a few days to come back - the ER doc had said he was going to order a "Lyme test".  I really didn't expect much from it and I didn't know which test he ordered.  But I got it back and it was one that I really wasn't that familiar with.  In fact, when I showed it to my Lyme doctor, I was told that they used that test very early on when the clinic was first operating, but soon found out that this test isn't super reliable (like most Lyme tests) in determining certain things, so they really don't use that test at all.  But what they were able to garner from looking at this test (it was quite abnormal), was that in their words, my body is wired that it is very hard for me "to fight Lyme disease".  No wonder!  6 years!  Of course my body has a hard time fighting Lyme...more so than others.

Sight-seeing - Washington Monument
in the background.

Now, for the first time in quite a few years, after my appointment I thought to myself, "I think I have energy to do a bit of sight-seeing."  No matter there was a heat warning that day, and no matter that I had to park, and walk to the monuments. Praise God that my body was ABLE to handle the walking, the heat, and that I was able to enjoy some time among historical places.  And after?  Instead of falling to the couch/bed to recoup, I felt completely fine and energized.  This is huge, guys.

I am continuing to do the best thing for my body - continue to nourish it and continue to build up my immune system.  And because I am able to exercise more, I do believe that is helping in this whole process.

Lincoln Memorial - one of my
favorites.

I'm not 100% yet - there are still day my body says, "rest" - but it's not every day anymore.  I'm thankful for the progress I'm making and for the wisdom to know what events to say "yes" to and what things to sit out.  I do believe that in the next year I will have no more symptoms. I'm prayerful about this as well.

I'll keep you all up to date as I continue to heal completely.  I can't stress enough how thankful we are for your prayers and your continued prayers.

unexplainable

So....I had the EMG test on both legs and feet last week - but mainly to test the nerves and muscle function of my right foot and figure out what is causing the persistent parenthesis/neuropathy (numbness).  After the initial appointment with the neurologist and his repeated questioning of my sanity, I was admittedly nervous going into this appointment.  I didn't want to hear anything from him on that subject again and I determined to stand up for myself a bit more this time if he pushed it.

At first he didn't; I thought he did, but he didn't.  He asked sort of out of the blue, "How is your anxiety?" and I think I snapped back a little too harshly, "I DON'T have anxiety!  That's NOT something I deal with!" - if you know me, you know I'm pretty even-keeled, but this was just too much and I was so frustrated and nervous (short-term...different than long-term anxiety) - he looked up and said, "Oh, well, I know.  The reason I ask is because you updated your medication list and said that you have recently been going off of some of your meds and this one in particular...it can make some people have anxiety issues when they come off of it."  I apologized and then told him, no, I've been fine and thought how thankful I was that it's been a very smooth transition coming off of a lot of the medications that have "held my Lyme riddled body together".

He then asked if I'd ever had an EMG test done to which I replied, "NO" and then briefly described it - electrodes and shocks which are moderately painful and he kept saying I could stop whenever I wanted - but no way!  I wasn't there to NOT finish a test, no matter how painful it was - I wanted answers.  Then the second half involved multiple insertions of needles into different muscles to "listen" to them and "hear" their functionality. This part was painful too, and again he kept giving me an "out" by saying I could stop whenever I wanted to.  I don't know why he did that, but I kept with it because like I said, I was there to get answers and I can handle pain.  My right foot and leg for sure felt so much different as far as the intensity of the sensation of the shocks and needle pricks. So I was sure there would be some sort of abnormal result.

But then he read the results right then and there and said, "Well, you're normal. There is absolutely nothing wrong with your nerves...which is good!"  Yes, praise God nothing is wrong with my nerve.  He believes there will be no lasting damage because he can't find anything wrong.  Machines don't lie....right?  Anyway, I expected him to dig deeper since I am still experiencing numbness.  But I got a surprise.  The next words out of his mouth were, "You know how I feel about Lyme - I don't believe in it - so this ankle thing - it has NOTHING to do with Lyme...NOTHING."  Pretty lofty words for someone who admittedly didn't even test for Lyme in all the blood work he ordered.  I'm not saying that would have shown him anything, but I think it was pretty wrong of him to make a blanket statement like that.  He then showed me to the exit.  I stopped in the hall and he turned around to see why I wasn't walking with him anymore.

I said, "So, if everything is normal, how do you explain the numbness?"  He just matter of fact said, "Well, some things are unexplainable.  Unfortunately, this is just unexplainable.  But at least you know your nerve is fine.  So I guess I'll sign off on 4 more week of physical therapy, but then you should stop and I guess we could see how your foot responds then."  Then he showed me the door.


So in a way, yes, I'm relieved because, according the the machine, my nerve is apparently functioning just fine!  Yay!  But, I'm still symptomatic and we have no idea why.  I just remember thinking afterward - "Story of my life -- unexplainable symptoms."  Could it be related to Lyme?  Maybe.  I am going to see my Lyme doctor this week and we'll see what they make of all the blood work and test results and an in person physical exam.

It may just end up remaining filed under - "mysterious" - and it may leave just as mysteriously as it arrived.  We'll see.

Keep us in prayer.  Thanks.

crazy?

Well, it's been a bit over 2 months now and the numbness in my foot has not changed at all.  However, I have more mobility and strength in my ankle and foot due to continued physical therapy. I just can't say enough good things about my physical therapist and the team that works with me. (A little more on that later)

It became very clear early on that I needed to see a neurologist.  Almost right after my first week of physical therapy, the physical therapist gravely looked at me and frankly told me that my foot was not behaving in any way that was NOT neurological and she recommended a very good neurologist she knew of that she believed would help.  So I made an appointment right away and was seen the following week.

The appointment was encouraging and discouraging.  Unfortunately, (for not the first time in my many years of doctor's office visit experiences), I was questioned more than a few times about my mental state when he saw "Lyme" stamped on my intake form.  But to be honest and thorough and for him to get the whole picture and really figure out what was wrong with my foot, I felt he needed to know everything.  Unfortunately, it led to the majority of the appointment him using phrases like, "have you seen a psychiatrist?" (more than once) and making me feel small.  But, finally, after referring him to my Lyme doctor and trying my best to explain some given Lyme symptoms and how they affect the body, he moved on and did take my foot seriously.

I mean, there really is no way to fake a numb foot - he really tested that out and - you just can't fake numbness.  When needle prick is done and you can't feel it, and other little tests are done, I think they figure out that you aren't there seeking attention for attention's sake.  You're there for help!

Sweet map on my foot

They drew a nice little map of the numb area on my foot and came up with a plan of action - an EMG test to be done in August (this week in fact), blood work to test for just about everything, and continued physical therapy.  I think I counted 17 vials of blood taken at my draw? Yikes!  And then I had to go back the next day for another blood test that took 3 hours and involved 4 more draws.  I'll get the full results and explanations when I go in this week for my EMG test (a test that basically maps your nerves and muscles and their functionality).

All marked up

While over the last two-ish months, nothing has changed in terms of the numbness of my foot or the mobility of my last 3 toes on that foot, I will say that the physical therapist is A.M.A.Z.I.N.G.  She is not only focusing on my foot - she's noticed that years of being sick has made my whole body weak and has gently worked on getting my body back to a place where it can build up stamina and gain energy from gentle exercise.  And through it all, still no seizures.  I started on a recumbent bike for 5 minutes.  Now I'm on a treadmill for 10-15 minutes, not to mention the myriad of other exercises I do.  It's given me confidence to branch out and do light exercises on non-therapy days.

I'm not totally healed from Lyme&Co. yet, but this is huge stuff, guys!  Being able to exercise without completely falling apart is pretty great.  I still get worn out and I still have to parcel out energy for the week, but I can tell I'm getting better and my body is getting stronger.  It's a good thing.

So next thing up for prayer is that darned EMG test this week and the results of my blood work.  Thanks, everyone!

unchartered

Poor foot

So....after that ER visit for my foot...it did not end up getting better.  I mean I can now wiggle my big toe a bit, but the patch of numbness is still there and mobility is still severely limited.  My doctor decided it would be best to get me to physical therapy quickly and also get me back up to my previous dose of neurological drugs (that I had worked hard to come off of because I haven't had seizure activity since December!) in the hopes that feeling will return.  This will take a week or two because you have to titrate the medicine slowly.

So I wanted to give an update about how the initial PT evaluation went the other day. The director of the clinic evaluated me and she was really kind and understanding about Lyme disease.

After a thorough evaluation of both legs and feet (my right one is still numb in a particular area and severely immobilized and very weak), she pointed out along the way and after, that everything was really "fitting" MS symptoms - the way my good foot would do a little double take when she asked me to push back against her restraint, etc. She did so many of these sort of tests on both legs/feet and explained scientifically what was happening.

She said most times when you get numbness in the area I have it in, it affects the mobility of the foot in a certain way, but my foot was NOT reacting how she would have thought it would and that made her think maybe it was something neurological COMBINED with an issue with my c-spine which all points to MS.

But at the same time she acknowledged it still could be some odd Lyme thing going on and maybe it would clear up. And her goal as a physical therapist was to strengthen and get my mobility back.

She seemed to puzzle over it a lot and test my feet and legs and hips and reflexes all different ways and even at one point said, "You know how some people are more immune compromised and they seem to get dumped on? I just wonder if you could have Lyme AND MS?"

She said because of the way my feet were reacting, it just wasn't following the normal "pinched nerve" symptoms, so she ruled that out and she thinks it may be a neurological issue and if my neurological meds DO help take the numbness away, that would be great because the longer it's numb, the greater chance for permanent nerve damage.

She's going to have me come in quite often for the next 4 weeks and then re-evaluate and if things haven't gotten better or they have gotten worse, that's when she would want me to see a doctor right away about MS again with all her notes in tow. If things are improving...even a little bit, then we would continue for another 4 weeks and hopefully see the most improvement after that.

So you can be praying that my foot will improve and the numbness will disappear very soon and that no permanent nerve damage will be done!

footless

....going on about 48 hours now. The oddest thing and we still don't have an explanation for it. Two days ago a portion of my inner foot started tingling then went numb completely and left portions of my foot with very limited mobility and the inability to wiggle my toes or rotate my ankle.  Now, if this had happened 9 months ago or before I probably would have immediately thought: "LYME".  But because I've been doing so much better - no seizures, very few neurological symptoms, and the fact that I'm on such a low regimen of antibiotics - sort of there to "mop up" what's left of Lyme&CO, I did get a bit worried.  I put in a call to the after hours on call Lyme Dr, but didn't get much helpful info because they didn't have my chart in front of them and because after about 2 hours of trying a few "tricks" things seemed to be getting worse, we made the call to go to the ER.

Most Lyme patients DREAD the ER - doctors roll their eyes, nurses look at your medication list or hear "Lyme" and then treat you with un-kindness.  I can't tell you how many times this has happened to me.  The anxiety about going to the ER was greater than the anxiety I had about the paralysis of my foot!  That should tell you something.  But I thought it needed to be checked out because once again (as a few years ago when I had that lymph node lump), you can't just assume that "every symptom" is a Lyme symptom.  Since moving to our area we haven't been to the local ER so this was a new experience.

I prayed and prayed that God would bless us with kind nurses and a kind doctor and He answered yes!  The doctor was so understanding and so thorough.  He even asked for the number of the on call Lyme Dr so he could speak with whoever that was to better understand what might be going on.  He said he didn't have much experience with Lyme but he did want to learn more.  He thought my symptoms very odd but didn't dismiss them at all and suspected MS based on a very rigorous examination.  So into the MRI tube I went and lots of blood was drawn so he could check for other things - inflammatory markers, etc.  And story of my life -- it all came back squeaky clean.

But instead of treating me like I was faking (and this has happened before in other doctor's offices and ER's we have visited), he sat down on the bed and talked to my husband and I and told us it may still be MS because sometimes the first "episode" and tests don't always prove positive - you have to wait for another episode to happen.  He said probably not, but to be on the lookout for that.  He said it could be a weird Lyme thing and that my Lyme doctor would follow up with me to see if they could figure out if it had anything to do with that.  And then he said what I wish a lot of doctors would say - he said, "Sometimes I wish we doctors had a big book to open for mysterious, unexplained-by-tests incidents because that would make our jobs so much easier!"  He was so kind!  He did one last check to see if my foot had improved and then was about to discharge me but before he did he said, "You know what, I don't like that you can't flex - it leaves that tendon on the back of your heel just sitting there.  Let's get you a boot so your tendon doesn't go into a sort of "atrophy" -- so it can stretch."  And then told us how late he'd be there that evening if we had any questions or if it got worse and then wished us the best. I was diagnosed with peripheral neuropathy and a few other terms meaning "weakness" and such.  But when we left, even my husband said, "Wow, THAT was a different experience than our last ER visit! He was a great doctor and what nice nurses." (or something to that effect) And it was exactly what I was thinking.

This portion is numb

So that brings us to now -- no change and we are still working with my Lyme Dr to figure out what is going on.  What do you do when the gamete of tests have been run and everything is clean? And yet -- a portion of your foot is numb, you can't wiggle your toes (I've been able to increase to wiggle my big toe!! Go big toe!!) and you can maybe flex your foot a cm off the ground?  This is what we are trying to figure out.  Is there permanent nerve damage?  Will it disappear as quickly as it set on?

I can flex my left foot but can only barely flex the right

I am able to walk, but my "lump foot" seems to drag a bit.  Am I scared? I definitely was when it first set on, but at this point there's nothing to be but calm because like I tell my kids - "Will God still be God if this never goes away?  Yes."  So for now I'm calm.  It would be nice to have answers and I hope with further testing or whatever we'll figure it out, but hopefully and prayerfully it is just a weird "Lyme" thing that will just disappear soon.

As for an update from my last Lyme appointment - it went so well.  My Dr. could tell that I was doing so much better cognitively than the previous appointment!  And it was decided that to see if my energy would improve it would be prudent to continue tapering off some of the unnecessary meds that I just don't need anymore because I am getting better (I haven't had a seizure since December!) and other such ones that I've been on for a long time that just might not be useful anymore and may be causing low energy.  That went well and I'm basically at the point where I should be for my next appointment to re-evaluate things and I did see a slight increase in energy but it's tiny.  The doctor said that energy is one of the last and hardest things to regain for a Lyme patient.

But my husband and I are encouraged.  We've seen so much progress.  I'm tolerating my antibiotic cycles so much better than before (although they are still hard weeks), and while I don't have the energy of a regular woman in her 30's (by far!), I'm in such a better place than I was even 6 months ago.

So prayer request - that the peripheral neuropathy in my foot will disappear soon!

anticipatory

It's been so busy. It feels like one thing after another this last month.  And it can be a good barometer of how I'm healing to watch how my body responds to all the busy-ness.  Our family just got back from Seattle.  The WHOLE family went. WOW.  For sure my body isn't up to traveling alone with all the kids, and I'm thankful my husband volunteered to sit with the two most precocious ones on the way there and the way back.  And I'm thankful for gracious and understanding friends who let me just sit and be at their houses, not expecting me to jump up and help chop food and set tables.  They remember me at my sickest 5 years ago and while I've improved so so much since then, they are the kind of friends you want for life. They are godly and humble and selfless and they put your needs above their own and don't judge you for just needing to sit and watch them prepare food for (oh my goodness) 8 kids in all if you combine them!!

It was non-stop while we were there and it was so fun! But when we got back, my body crashed.  We walked in the door, I lay on the couch, and my body just crashed.  And it's been doing that for quite some time.  Even though I've been doing so much better and been able to do a lot more, walk a lot further, etc - I still pay for it. Usually it means I have to lay, recharge a bit, and then I'm able to get up and do a little more.  But the crash from Seattle was literally a 6 hour straight nap during the day, wake up to eat a little bit even though my tummy was queasy, watch a bit of Netflix, then sleep hard through the night.  My body needed a really big re-charge.  And the following day I still felt like I was recovering!

So energy is still a huge issue we are dealing with and in a few short days I will go to DC to see my doctor and discuss these things and get examined and find out what's what.

A lot of times I try to compare it to the phone battery - imagine waking up, but you only have about a 40% charge - even though you just slept through the night! After a shower and getting dressed, you're already down to 20%. Making breakfast for the kids takes you down to 5% and then you start thinking in your head about how to ration that last 5% until you can re-charge.  I have it down to a science on some days when we have to go out.  The shower goes out the window, obviously, and that saves me a little bit of battery "juice"; my husband makes the kids breakfast or the eldest will chip in, and that helps; but still you have these unexpected things that come up and boy, oh boy! You just don't know what is going to "drain your battery" or when you'll have a chance to lie down and re-charge.  Sometimes a nap is needed for a really good re-charge, sometimes just quiet and lying down is needed. It all depends on the severity of what energy has been expended.  And THAT is what needs to continue to be addressed with my doctor and team of doctors.  They have already been working on this and one of their solutions has already proven to have been helpful, but we've got some work to still do.

So that is why I am anticipating this next appointment at the end of the week to find out the next plan of action and see if we can't get some more energy ideas put into place and well as continuing to address killing off the last remaining little buggers of Lyme&Co.  Thankfully it looks as though there may not be many left.  But just as soon as I start thinking that and the doctors start evaluating that, sometimes Lyme can throw you for a loop...it's such a tricky disease.  So we continue to pray that God heals me completely and thoroughly and rids my body of all traces of this horrid disease!

We are thankful for how much more I am able to do and for all the improvement we've seen over the last years.  Even when it's hard to be thankful for the lows, I know God has used them to help encourage others, so I know there is glory for Him in that.  And I know my kids watch me closely and are learning valuable lessons that I hope one day will translate to them in one way or another. So - I anticipate the end of the week and what the doctor will say!

curled up

It's treatment week and it's just about that time in the week that I wilt.  My husband walks in for lunch and finds me curled up in a tight ball on the couch, the kids doing (what I can only hope are good and right) things in the playroom, and it's almost just routine now -  the tighter I'm curled, the more he knows I'm fighting the pain and the ugly ickiness that comes with killing what's left of the Lyme disease and the few co-infections I have left to get rid of that the tick gave me.  He acknowledges me and states (more than asking), "The medicine is catching up." And I sort of groan an unintelligible answer. And then he goes into the kitchen to do what I still long my body could do - a simple thing - make lunch without feeling like I've run a marathon! He gets lunch on the table for all the kids and brings me something to eat and I sit up, dizzy, but manage to eat even though my tummy doesn't feel right and I wish I had some strong ginger beer to help ease the queasiness.

I'm thankful that the Lord has let me have good mornings.  We get a lot done in the mornings - all that needs to be done gets done, but by lunch, I'm done for and then - as far as the kids are concerned, ESPECIALLY on treatment week, it's "room time".  They've gotten used to it since they were little - it started with music and toys and books in their little rooms and just branched out to accommodate me needing a rest time on more trying days when I need quiet and days when curling up tighter and tighter and tighter is really the only solution until help arrives (aka "Daddy's-home-from-work").

"If you really get into any kind of touch with Him you will, in fact, be humble -- delightfully humble, feeling the infinite relief of having for once got rid of all the silly nonsense about your own dignity which has made you restless and unhappy all your life." - C.S Lewis

We are really thankful that I haven't had a seizure since December.  We are praying that it remains that way.  I have to be mindful of various things when my body feels "on the verge" as we call it - noise, sensory overload, even standing for too long! So far, though, my doctor (and we) think that the dose of my seizure medication and the continued treatment of Lyme&Co and detoxing has helped with the seizures which used to be such a big problem - many a month, and now, praise God, ZERO since December!

When you're curled up in that tight, tight ball, all you can think of is the pain, or how awful you feel, or how you just.can't.get.up.  But that's the thing - it's another opportunity to turn your suffering into a mindful exercise of putting your mind off of yourself and your suffering and putting your mind on to Christ.  I still often don't know how or why God is putting me or us through this trial or this period of continued suffering, but I do know that He will and has been glorified through it; I need to stay steady at the course.

"The Son of God suffered unto the death, not that men might not suffer, but that their sufferings might be like His." - George MacDonald

As we come upon Easter and think about how Christ ultimately suffered for us, it's hard not to ponder and worship Him in a different way through the lens of one who has and is suffering. I can find many things that God has blessed me with and I am humbled.  I'm still learning to look along the beam of sunlight in regards to my affliction. 

And most of all, I keep beating this phrase into a kind of repetition when those moments of needing to curl up tight are all I can do - "this light momentary affliction is preparing for us an eternal weight of glory" - 

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

in true love

These are all words I've written before, but they are all compiled a bit differently.  You'll just have to excuse me.  My brain isn't functioning well enough to come up with original material today!  But I feel it's been too long that I haven't sung the sweet praises of the guy behind what makes this whole "machine" keep working, ticking, keep chugging along.  I honestly wouldn't be encouraged enough to continue on without God's graces and he tries to point me towards that in everything he does.  So - here we go:

I've probably written about it before.  In June 2006, Matt and I vowed before God and our 150 or so guests to love each other "in sickness and in health".  It's funny when you are preparing vows and thinking about them and the seriousness of them, when you read about your promise to love each other whether you're healthy or not, you consider minor illnesses like the flu or cold and you kinda get warm fuzzies thinking about how you'll get to pamper your husband-to-be with some homemade soup and some TLC.   You briefly consider the possibility of cancer or some other serious illness later on - WAY later on, but you're young, so those are fleeting thoughts that skip by without dwelling on the sadness of them but you know you are promising to stay even if that were to come about.

But we NEVER in our preparation for marriage even harbored an inkling of a thought about what would happen to us.  We got pregnant soon after getting married and were so overjoyed.  Our first anniversary came and went and then we were holding our little baby in our arms.  All seemed fine until I got gallstones 5 weeks after birth.  That was the straw that broke the camel's back.  A camel's back we didn't know existed until then.  It was the beginning of a long spiral downward into what we now know is Neurological Lyme Disease and Co-infections.

It was many days of pain, misdiagnosis, miscarriage, another baby, confusion, more misdiagnosis, more miscarriages and ultimately watching my husband watch me wilt before his eyes.  I went from a healthy 135 pounds to a sickly 105 pounds.  I could see the pain in Matt's face when he looked at me helpless.  He WANTED to help me.  He didn't want to run away or run out on our marriage.  That never crossed his mind.  He was so affected with pain FOR me that he would often (and still does) just sigh and say, "I wish there was some way I could take your place."

Finally, 4 years into marriage we got an accurate diagnosis.  While the diagnosis of Lyme&Co isn't grim in the sense that you are sentenced to a slow painful death, it IS grim in the fact that you are sentenced to a slow, painful recovery.  If Matt or I thought this was the easy answer to our years of frustrating misdiagnosed problems, we thought wrong.

The diagnosis came just in time.  I started having partial seizures (which later became much more severe) - something that left me scared and short of breath, just watching my limbs flail and wishing so badly I could just be unconscious (and years later I would be) for them.  Matt would calmly be by my side and talk soothingly in my ear while trying to shield me from the view of our two little ones.  I was embarrassed that he had to see me that way.  Heck, he'd seen me in way more "compromising" positions that should have been embarrassing but weren't.  But I think what embarrassed me about getting so ill was that I had always prided myself on how strong I was, how much endurance I had, how I could (usually) "keep up with the boys".  And here I was not able to move on my own.  I had to have help in the bathroom!  I needed help showering!  And, gasp!, I had to be pushed around in a wheelchair! I mean, it all felt demeaning.

But I'll tell you what, my husband NEVER made me feel demeaned.  He helped me without a second thought, like it was his job.  He's offered help when I was about to heave, picked me up off the bathroom floor and carried the full weight of me, and he's stayed by my side as I convulsed while neither one of us felt comfortable but had no idea what to do otherwise.  He's shoved medicine in my mouth when I otherwise couldn't do it myself.  He's cut up my food because my joints hurt and he offered to feed me when he saw me wilted at the kitchen table before my dinner.  The thing is - it is his job.  He promised it at our wedding. But he has never treated it as a burden.  

It's times like these that I reflect I am just dumbfounded and in awe at what a wonderful God I have, that He brought Matt and I together.  I can truly see His precise hand in the matter, knowing that I'd need this man and his humility and his servanthood in my life.

I'll tell you when I first understood the meaning of love in our marriage - - when my husband lovingly and without hesitation took on all the ugly parts of this disease that have made me physically not beautiful, emotionally not very nice (mean to him), and spiritually downtrodden.   He must truly love me and THAT gives me butterflies as I realize he is imitating our Savior which is just how he was commanded to love me in God's word at our wedding years ago.

 All the reasons I FELL in love with him in the very beginning, happen to be the same reasons I love him today. Let me give you some examples:

-Matt displayed humility and servanthood when we met - Over the course of our marriage this has showed itself very clearly. He never acts better than anyone; he always thinks and talks the best of people; he proactively looks for ways to serve me even when I don't ask; he doesn't complain about the 'burden' I can be since my health has been, let's just face it, AWFUL -  for most of our marriage -- he just tells me more than I could ever ask for, how much he loves me and never regrets marrying me; he never hesitates to admit fault and isn't stubborn about changing to become better for Christ. He is oh-so-patient with his feisty wife and doesn't expect me to be something more or less than I am. He encourages me to be like Christ but loves me even though I'm a sinner. He's brilliant too; he'd get mad if I told you his score on the SAT, but he won't talk about it or rub it in *wink*....really...try asking him - he gets super uncomfortable and you'll never get him to tell you :)

-Matt displayed persistence and diligence when we met - He works so hard, yet effortlessly and he's faithful to his job and hardly complains about it even though the hours can sometimes be late and his previous job was, I believe one of the hardest jobs of all time. He views life through the lens of God's sovereignty; he realizes God has planned our life to be the way it is, so instead of complaining about the seemingly bad things, he just plugs through them, trusting God because He is trustworthy. He learns things quickly and if he NEEDS to learn something, he pays attention so he can get the hang of it fast. He's never scared away from a project just because he doesn't know how to do it. He sets about working with his hands to figure it out. He's very determined (something his daughter has taken after him about!).

-Matt displayed teachability when we met - He is always open to suggestions (and I give them way too frequently) and always willing to change; but he's not a push-over...he'll defend his honor when needed and he'll put me in my place gently whenever I need it (thankfully!). He does care deeply about sin and wants to be holy. He is so trustworthy and honorable and my heart swells with pride when I think about him *flutter flutter flutter* :)

-Matt displayed leadership when we met - He's a good, strong, dependable leader. He doesn't flaunt his 'power' in our marriage. He leads with care and always tries to understand me and come alongside me. He communicates with me and tries to make our marriage a joint commitment, not a one-sided dictatorship. He makes it EASY for me to follow him and trust him because he cares so much about what I think. He doesn't have to, but he has totally earned my respect instead of demanding it.  He's a great daddy too and I know our kids are growing up respecting him as a father and learning from his humble example. I think it will be easy for them to want to know God more because of their Daddy's faith.

-Matt displayed a desire to know Christ more - I love how Matt gets excited about the Bible. He loves the Old Testament stories and often has insight to share with me about how applicable it can be to our lives. He thinks about Christ's words in the New Testament and wants to follow Him. He understands how to interpret the Word of God correctly and in context and how we should apply it to our lives to grow closer to Christ in our walk with him as a couple and as individuals.

-Matt displayed humor and laughter when we first met - I cannot tell you just how fun it is to laugh with Matt. We get the giggles ALL the time. We will laugh until we cry. We find the same things funny (which if you think about it is a real blessing....wouldn't it be awful if he thought some movie that I thought was terrible, was super hilarious?). We enjoy the same silliness that only each other understands and we can make each other laugh at the most rotten times in our lives. He knows how to get me out of a grump-frump by persistently, but not annoyingly, being silly to make me smile. This is a feat no one else can do! He knows how to balance the fine line of teasing me without offending me (too badly at least) :) He encourages me not to think too far ahead and get sad about the future (when sad things are ahead) when we have so many happy blessings right here in front of us.

-Matt displayed spontaneity when we met - He never complains when I come up with some last minute change of plans. He's fun to adventure with and even though the adventures don't always go as planned, it's fun to be along for the ride with HIM. We've gotten lost together so many times and sometimes even though I don't show it in the moment, I secretly enjoy the hilarity of our misadventures.

What a blessing to have a husband who doesn't change with the wind and what a blessing to know JUST what I was getting - no surprises after we said "I do." The only thing I didn't expect when I got married was how much fun it would be to be married to Matt.


I think time flies when you're not having fun too. Icky antibiotics and a routine that just kills ya.  It's not fun for me, but I see love all over and through it.  He care for me so much and I am so blessed that he is my husband.  

When I was on IV last year, he left for work at 7am, but we got up at 6am so that he could administer 2 doses of IV meds.  THAT, folks, is love for a guy who is not a morning person.  And he didn't complain about it at all.  No grumbling or whining or hemming or hawing; I've got a keeper and boy do I thank the Lord for him so very often that he's stuck with me through SICKNESS and health.  He's kept his vows for nearly 10 years of mostly sickness.  We pray this will be the year that health prevails.  But if not and the Lord chooses another path, we'll trust Him with that and do what He bids.

I know that neither Matt nor I are the exact same people we were when we got married ten years ago, but I know that the changes that have happened are GOOD and have brought us closer to the Lord and have deepened our faith and brought us closer to each other. Marriage isn't perfect and isn't always easy but when you follow the Lord and keep Him central in your marriage and try (ever so hard sometimes when your natural inclination just wants the opposite) to put the other first, it can be joyful.

Life is NOT how we dreamed it should be at this stage in our life. Married to each other - each other's best friend, 3 kids. I think we envisioned our lives being more adventurous. I mean, this truly has been some kind of adventure but we thought we'd be adventuring in other ways - across the world together, hiking, traveling, being more involved in our church, being more involved in tuning the hearts of our kids. I know for a fact that when we vowed our vows on our wedding day, that neither one of us expected THIS.

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

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

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

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

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

So here are the last few things I have to say about my partner in life that God ordained to spend with me through thick and thin - the things I love about him - the not so serious things - the silly, fun things that wrap this up and make it a bit more lighthearted: 

1) I love how he's taken on the role of "chef" in our family since I've gotten ill and haven't had energy to make dinners.  He's taken it to the extreme and done VERY well with it.  He does own the Julia Child cookbooks and has read them and now understands the whys of how cooking her way works well. He'll explain to me why I am saying, "These fingerling potatoes are SOOOOOO good!".  He LOVES to cook and come up with delicious food for us each night.  He's a good chef and someday I know he'll go to culinary school. 

2)  I love how he loves our kids.  He wants every little story about them that he misses during the day while he's at work.  He laughs with me at their silliness and will often report to ME when they do something hilarious that I've missed.  

3) I love how he's the best singer of 'Mr. Roboto' that I've ever heard.

4) I love that he can spend hours on a piano bench taking turns playing the piano, guitar, and ukulele.

5) I love how he likes our cat (even though he might deny it to your face...but he likes her and that makes me happy).

6) I love how he makes fun of the music on my playlists, yet he listens to them and sings along.

7) I love how he never ceases to keep me entertained just by being himself.

8) I love that he studies God's Word faithfully.

Happy Valentine's Day, to the one who I know won't abandon me even though I'm quite a mess!

alive

I'm here guys.  I know it's been 8 months.  I did get my line out. I did take a shower (only to find out our hot water heater was really old and only held hot water for 5 minutes -- so my husband gifted me a new one and I took a very long HOT shower).  I did take a jacuzzi.  I did swim in a pool.

It's been 8 months.  The line came out.  It's been hard...still.  Maybe I expected it to be easier like *poof* - your line is out - you are a jump higher on the mountain climb of Lyme&Co? But it is still a bumpy mountain bike trail that hits rocks and divets and goes deeply down and up up up and then down again.

It's been hard. It's not just Lyme I have to contend with so that makes it all the more hard. Life and Lyme - how do people get better I wonder sometimes? But my doctor is committed. Won't give up. In it for the long haul.  Despite being beaten up by the IDSA - they trudge on because of patients like me and you because they see us getting better even if it is little by little.  They are trained to see the sunshine as the coal dust settles and they see it and it's what keeps my doctor and staff going and for that I can be grateful!

Anyway. I haven't been up much for writing.  But I'm here and much has been going on in my Lyme world. And maybe someday I will write about it. And maybe today writing something means I'm a little more open to sharing more and more. Hope you all are soldiering on no matter what ails you! ((hugs))