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.

8 comments:

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  3. This is fantastic to hear! Praise God!

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  4. This is fantastic to hear! Praise God!

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  5. Hi your story about fighting Lyme is amazing and it may save my life. I had a baby via c-section 8 months ago and after that I started experiencing almost the same symptoms as you did. I've been seeing so many different doctors. My fatigue is so bad, I have pain all over my body and they move around. I woke up in the morning feel like so tired. Now I realize I may have Lyme. I will go back to my doctor and ask for a test. I didn't get a bite when I was pregnant or after. But I did get one when I was in high school. But I didn't know it was tick. Anyway, I just want to say thank you. You know how hard to fight it when you have a newborn and you are feeling so sick.

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    1. I'm so sorry you are struggling. I hope you can find the help that you need to get well!

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    2. I'm so sorry you are struggling. I hope you can find the help that you need to get well!

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