Wednesday, March 29, 2017

healthy - resolved/the end

What wonderful news I can give you - I have no symptoms of Lyme disease or co-infections. Last month I had my final appointment with my doctor and while I didn't know that it would be my last going into it, I had a pretty good feeling that it might be because of just how I've regained health over the last year. My physical exam and health report were received very well and as a precaution (because of JUST how aggressive and enduring my infection was), I will continue on a very minimal dose of antibiotics once a month until July.  Then, I'm done.  But honestly, it does feel all finished now, because even that once a month tiny dose of medicine doesn't end up causing any symptoms to flare and my daily life is completely back to normal - no lingering symptoms at all!

I'm still adjusting to having a fully functional physical body!  I am daily still in awe and thankfulness that God would restore my health and I love feeling normal again.  I feel even better than I did before all of this sickness really took hold!  Can you imagine?  Having a sharper mind in your 30's than you did in your 20's? And instead of feeling the effects of age on your body, you feel more physically able and fit than you did in college?  Amazing.

Because of so very many years of being bedridden and just not using many of my muscles that often, I've had to ease into activity.  My body WANTS to do more than I let it right now because I've learned the hard way over the last 6 months that if I do as much as I feel I can, the weak muscles revolt at the end of the day with spasms and soreness.  I'll clarify to those of you who struggle with fatigue and joint pain -- this pain is NOT that!  It's the good pain of muscles being utilized and being trained.

Spiritually and emotionally, I am so relieved - so thankful - that this particular trial is over.  How difficult and how absolutely stretching  was this trial.  At times I felt like a bow and arrow being stretched and stretched, nearly cracking because it couldn't be stretched anymore, and yet God stretched MORE, not yet ready to release the arrow.  And I will tell you, the Lord made me stronger through it.

I think the ultimate questions you can measure your trial with are very basic beliefs you have about God.  Before your trial was afflicted, you believed certain things about life and about God.  During your trial, did/do you still believe those things?  Were they proven true?  That is the true gauge of whether your beliefs and/or the God you believe in is dependable.  So here are a few that I continually asked myself during those very long, arduous 9 years of torment and distress. Working my way through TOUGH theology brought me closer to God than had I tried to emotionally go to a place pursuing what I felt would somehow refresh my heart but would have been just a Bandaid, quick-fix to a hurting heart and mind.  Wrestling through doctrine of the faith has always, always proved that the Holy Spirit is given to comfort and assist.   Was God who He says He is?

1) Is God Faithful?

“Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments." Deut 7:9

 “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so you can stand up under it.” 1 Cor 10:13

"Your steadfast love, O Lord, extends to the heavens, your faithfulness to the clouds." Psalm 36:5

God never forgot me, failed me, or ever faltered in His care for me.  He could be safely relied upon. Cherished hopes and dreams for my life were essentially shattered, though.  I often thought, "I have just lost 5 years of my life",..and then six, and then seven, and then eight, etc.  The self-pity and wallowing were a real thing at times.  The encouragement and change of heart attitude came when I dwelt on God's faithfulness and begged for His mercy to deliver me. My brain was so affected by bacteria a lot of the times that I couldn't think straight and couldn't wade through simple sentences.  There were many times that I lay, incapacitated, writhing in pain and physical misery and helplessness that the only prayer I could utter was a steady stream of repeated, "Help me, help me, help me...."  In those very basic words and stripped bare, the Holy Spirit was proving faithful to intercede FOR me when I couldn't even express what I needed (Romans 8:26). The Holy Spirit knew what to ask the Father when I didn't even have words or thoughts for what I needed and those prayers the Father was pleased to answer.  

I often worried that my kids would be affected in a negative way by not having a mother who was fully present in their life.  I don't just mean that I wasn't doing extras in their little lives - I mean I was locked away so very often that interaction was very minimal.  There were even periods when others had to take some of my kids for extended durations of time and my heart broke.  But God was trustworthy - He held my family close and grew my children and used others with like minds to help in the shaping and raising.  They aren't LACKING as I feared and in fact they are stronger for having observed such acute suffering and experiencing the outflow of it on their own lives.

And let me be clear, my faithfulness to God throughout these hard years was not by self effort.  Please don't make that mistake in believing that I tried so hard to be godly and faithful and that I succeeded. I was not faithful by my own resolution; ONLY because God strengthened me and because He made me faithful and gave me fortitude to endure did I make it through suffering not bitter and broken, but content and whole.

I could go on and on with example after example of His faithfulness in my life through this trial.

"The steadfast love of the Lord never cease;  his mercies never come to an end; they are new every morning; great is your faithfulness." Lam 2:22-23

2) Is God Sovereign?

"As for man, his days are like grass; he flourishes like a flower of the field; for the wind passes over it, and it is gone, and its place knows it no more.  But the steadfast love of the Lord is from everlasting to everlasting on those who fear him, and his righteousness to children's children, to those who keep his covenant and remember to do his commandments. The Lord has established his throne in the heavens, and his kingdom rules over all." Psalm 103:15-19

"And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ." Phil 1:6

"He is before all things, and in Him all things are held together." Col 1:17

"I know You can do all things, and no purpose of Yours can be thwarted." Job 42:2

The one question that I got asked the most frequently (and if not asked, then stated in people's observation of my suffering) was, "If God is good, why would He inflict you and not deliver you for such a long time?"  I do admit, this is one of the harder things to wrap your head around.

Did He allow this affliction to be put upon me?  If so, does that make him any less good?  My answer - yes, He allowed it, and no, it does not make Him any less good.  The fact that I suffered but prevailed having learned and grown closer to Him, not abandoning my convictions and belief in who He is, is proof.   He is so far greater than me, so far above me as Creator and Ruler, that as a human being, I would much rather choose to trust in His sovereign plan in my life because I know He has my best interest in mind.  We aren't promised that we will always have a clear picture of the WHY, but when you accept His rightful place in the orchestration of your life, you are given peace abounding. And when I look back over the last 9 years, each strand of anguish had a very fitting place within the tapestry of the life that He is weaving.

If you do not believe in His sovereignty, then your God is too small and you've relegated Him to be some sort of jolly father figure who sits back and observes but is not active, powerful, and far greater than any person can comprehend. You do not have a good grasp on His supremacy, authority, and role as infinite ruler. And yet, what kindness and mercy and grace He shows that such a powerful God would be intimately involved in each of our lives?  His love is so vast and great toward us (who are created in His image!) that He would make a way for us to have a relationship with Him - by giving us Jesus who made a way for us to interact and dwell in His midst without consequence.  Jesus took the full weight of the world's sins (which were the thing in every human that separated us from having fellowship with a holy, pure God) on himself at the cross, conquered death through resurrection and said, "Here, have this gift not only of eternal life with God, but of fellowship with Him as well."  Does His sovereignty over my life make me resentful?  No!  Dear readers, His sovereignty is a place of rest and cause for worship!


3) Does God give grace?

"For from his fullness we have all received, grace upon grace." Jn 1:16

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." 2 Cor 12:9

" and the grace of our Lord overflowed for me with the faith and love that are in Christ Jesus." I Tim 1:14

Grace is unmerited favor of God, and we see this not only in the salvation of sinners but also in the bestowal of blessings in our lives.  I by no means acted sinless through my suffering.  I didn't always have the right attitude.  I shook my fist, I doubted, and I wanted to give up on more than a few occasions.  Endurance was not something I wanted, but endurance is what God gave me and what healed me.  Put another way, God's perfect patience, or His restraint shown in the face of being incited was to exhibit His grace even more.  He allowed my times of doubt and anger about what He was doing in my life so He could display His patience and grace even more clearly to me.

He showed His undeserved grace in other facets of my life during my suffering as well.  Little blessings here and there that I never thought I had earned or deserved, but were much welcomed and appreciated. Look at every way He worked and delivered me, and know that it was all by His doing. We should be prepared to humbly accept the sun and rain. Should I thank Him during days of sunshine but then turn around and fuss and groan on the rainy ones? Trust Him only when He showers bounty and He seems close, and then turn my back when He allows discomfort and I perceive Him to be distant?  His grace was overflowing, pouring out and over like a roaring waterfall into my cup and I cannot look back over the last nine years and NOT clearly see that. He certainly deserves praise!

Don't grow weary, then - endure, but know that you can only endure by His help.


My most frequent prayer over the last nine years was not for healing.  Are you surprised?  My deepest and longest running prayer was that I might glorify Him through my suffering. Asking that God be glorified through my illness was the most rewarding prayer.  That was a prayer the Holy Spirit heard and rejoiced in and brought straight to the Father.  Asking for healing was something I definitely did, but asking with the truth and attitude of "if it's Your will..." kept me largely from doubting His faithfulness, sovereignty, grace, or goodness.  And I pray the same for you in whatever trial or suffering you may be experiencing today.

Thank you for keeping myself and my family in your constant prayers over these trying years.  We are so very grateful for those of you all over the country that poured into our lives when we had no other help.  The physical sacrifices you made, and the love that you showed surely modeled God's desire for us.  We will always be thankful for you.

I don't have plans to keep writing on this blog as it appears this health journey is finally at a close.  Thank you for staying interested and keeping up with your encouragement!  I hope that some part of my story over the years has been of some encouragement to you.  I'm still here for questions (click on the "contact me" link), especially those of you who have specific questions about what all was involved in my healing. In short - my doctor was very wise and really knows how to attack this disease.  Keep at the healing process and don't lose heart!  Those of you dealing with Lyme need to endure during the hardest moments of your life!  It is the key to getting well.  Prayers for you all.

-Heather






Thursday, November 24, 2016

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!

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
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.

Wednesday, August 10, 2016

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.

Wednesday, August 3, 2016

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!

Wednesday, June 15, 2016

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!

Thursday, June 9, 2016

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.
video

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!