Friday, September 2, 2016

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

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.

Wednesday, August 10, 2016


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 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.

Wednesday, August 3, 2016


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!

Wednesday, June 15, 2016


Poor foot
So....after that ER visit for my 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!

Thursday, June 9, 2016


....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!

Monday, April 18, 2016


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'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!

Wednesday, March 16, 2016

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