Life AFTER Lyme Disease

As it's been almost two and a half years since I've grappled with Lyme disease, I thought I would give you a quick update. I still have those symptoms I was still having that I thought was still a currently lyme infection, but I believe that it is just residual effects. I will never be the same person I was before this happened to me. Through the whole course of the disease, a lot changed about my personality and the last two years has shown me the extent of that change. There are a lot of things that I wish never changed, but God has a plan for it all!

I'm in the Winona State Nursing nursing program right now, and I that's unbelievable progress from where I was just a few years ago! I will graduate with my BSN in a little over a year and a half, and I will become a registered nurse. It has always been my dream to help people who are going through something similar to what I went through and what God delivered me from over two years ago!

Is it back?

My symptoms have been returning, and I've come to the conclusion over the past few months that I still have Lyme disease. I have yet to talk to any doctors or take any tests...and I'm scared. Your prayers would be greatly appreciated during this time of uncertainty.

Well.

As some of you may or may not be wondering how I've been feeling of late, I've decided to update my blog. :P

Some of my joint pain is back, and I think I have been experiencing what I believe is chronic pain leftover from the Lyme disease. If that is indeed what it is, I'll have it for the rest of my life; just residual Lyme stuff. But in spite of that I've been working very hard at building up the muscle I've lost over the past 2.5 years! I've been point physical therapy type stuff to get back in shape. I've been slowly exercising every muscle I can in order to build up enough strength to really work out. I'll be doing that for awhile, but this week I've started working out pretty hard [in comparison]. I've been stretching, doing a little yoga, walking a mile every day on the treadmill, doing pushups, a million different kind of crunches/ab/core strength exercises, lifting weights, and other random stuff. It's paying off! I find myself stronger already. But I'm going to need to do it for a long time in order to actually get in shape.

I've also had some really weird stomach pain over the past few months. I went to the doctor a couple times and she gave me some Prilosec [to reduce stomach acid or something] which helped for a bit, but it came back. So now I'm back off of wheat [which I'm allergic to] in the hopes that it will help. It has been, but it hasn't completely gotten rid of the symptoms. So I'm also eating healthier, having a more balanced diet, eating less sugar, etc. hoping that that will make me feel better. I guess we'll see!

He is faithful.

Well I feel GREAT!!!!!! Aside from some muscle pain, tremors, and memory problems, (and ironically everything else I can't think of right now)... I'm pretty much better!!!!!!!!!!!!!! God is so good!!!

I work out almost every day now and love it. I can't actually DO a whole lot though, because I'm still building up the basic muscle tone that everyone has from day-to-day life, and that I don't have because I haven't been "active" for 2 years. So I'm still working on that. But I can walk half a mile, straight!! Trust me...from the girl who couldn't stand up on her own? ...This is a big deal. And I also have an ACTUAL appetite!!! I was rarely truly hungry for about...the entire year of 2009. So its a huge step!

I'm pretty gosh darn excited that it's a new year with a fresh start. 2010 is going to be a year of good health for me!! :) The first one since...ever. Before Lyme disease I had serious allergy problems for a few years. So this should be the first GOOD year health-wise in about....5 years! Wow!! Epic.

The Recovery

Well, I've been off meds for almost two months now. I'm feeling so much better!!!!!! :) Not perfect yet, but that will come over the next two months of recovery. But my body has pretty much stabilized! I can work out, I have some energy (sometimes :P), I can actually control my weight instead of gaining/losing 15 pounds every few months, I have an appetite again, I can walk, I can run, I can see, I can think, and I can talk and formulate actual sentences!!!! The neurological symptoms still have room for improvement, but that's a slower process.

Ah, the things you take for granted when no longer have them. Who ever though I'd have to be thankful that I can lift my arms above my head, that I can cut up my own food, that I can walk, that I can write, or that I don't have to wear braces on my hands/wrists!! It all certainly puts the world in perspective for me. I've said this before and I will say it again - thank God for your health! It's taken for granted until you lose it, then it becomes the most important thing.

Anyway, I'm out of the woods for the most part, but if you think about me, please say a prayer that my healing would continue speedily along and that I would make a full and complete recovery. Thanks!! <3 :)

End of the road!

I arrived at my doctor appointment yesterday feeling like crap, and told the doctor that. She then told me that they were taking me off the meds!!!!!! Apparently they're convinced the Lyme disease is gone, and the leftover pain I have is from the antibiotics. I should be totally better in 4 months!!!

PRAISE THE LORD!!!!!!!!!!!!!

I
AM
DONE.

Please keep praying that I would indeed feel better, and that I wouldn't have any residual pain. If I don't feel better in four months, I'll be getting re-tested for arthritis. But I probably will!! :)

Dear you:: I'm scared. Love, me.

Hi all, just wanted to let you know how things were going.

To sum up:: badly.

I'm in a lot more pain than I have been, and it just keeps getting worse. I've had new symptoms relating to my heart that has caused us some real concern. By my next appointment on November 3rd, I'm scared that if I don't improve that they will put me on an I.V. Please pray that my symptoms would turn around in the next ten days and that I would see some significant improvement!!

No IV!

Good news from the doctor appt!! Apparently the pain I'm experiencing sounds like its good pain! (Lyme die-off: Jarisch-Herxheimer reaction) That's the same thing they thought when I was on the last medication (which didn't work - it was actually me getting worse) so I'm paying close attention to how I feel this month. At my appointment next month they'll evaluate how I'm doing on the doxycycline and if I need an IV installed. Pray the Doxy is really working!!!!

[Oh, and I've been on treatment for 15 WEEKS ALREADY. Doesn't time fly?!]

The day is coming . . .

Just thought I'd update you quickly on what I'm up against this week.
My doctor appt is on Tuesday... about 5.5 days from now. It is a very important appointment, as there is a fairly good chance I'll leave with an IV in my arm which will stay there for a very long time. It all depends on how much or how little I've improved in the last month. Right now I'm not even sure how I'm doing, but I can tell you that it is not good.
Please be in prayer that I would clearly be able to tell how I'm feeling and that the decision would be made clear to the doctor and nurses involved in making the decision. And pray for God's will to be done, whatever the decision, and that I would be acceptant of it.

***IMPORTANT*** Bad News...

I just went to the doctor this morning (third visit so far). I've been on my meds for 10 weeks, but it turns out they're not helping. The pain I've been experiencing is from the Lyme getting worse, not dying off. So I'm switching to a different kind of antibiotic (doxycycline) for 4 weeks (until my next appt) hoping it'll help me to actually get better. If I don't show signs of improvement in those 4 weeks, there's a good change I'll have to start on IV antibiotics. This would include a permanent IV port (with a catheter always in my vein - 24/7) for as long as it's needed.

I really need your prayers right now as I'm really discouraged and fighting depression. My level of disability is extremely severe - it's difficult to walk or stand because of the pain, I am unable to wake up in the morning ("excessive nightime sleep" is the symptom - it has made me sleep through my alarm almost every day and I have been late for several things), I have become fairly bipolar and go into hysterics regularly, I have no appetite, My speech impediments and dyslexia have become almost unmanageable, and my typing, writing, speaking, spelling, and word recall skills are almost non-existent (All of the above are probably down to a 7th grade level). School starts on Monday, so I'm fairly nervous that I won't do well because of my level of disability. Again, please pray for me!!!

Day 2..............or Day 42???

Yesterday was the day my original appointment with the specialist was supposed to be: July 22. But today marks the sixth week I've been on treatment and I've already had one follow-up appointment. God is so good! I've taken so many pills (164 HUGE ceftin pills [antibiotics] to be exact, plus probiotics and other meds) that I never want to see another one again, but alas, this is only the beginning. I was feeling better, well, and even normal for the first three weeks on the meds but three weeks ago I started to get very sick. I am suffering from the Jarisch-Herxheimer reaction. The Jarisch-Herxheimer reaction occurs when large quantities of toxins are released (back) into the body as the Lyme bacteria die, due to antibiotic treatment. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. The duration with Lyme disease (for someone with my severity) is normally four to six weeks (I am three weeks into mine). The intensity of the reaction reflects the intensity of inflammation present. (Source: Wikipedia; http://en.wikipedia.org/wiki/Herxheimer_reaction) My symptoms include fever, flu like symptoms, dizziness, nausea, chills, headaches, migraines, light sensitivity, sound sensitivity, more severe eyesight problems, severe muscle pain, severe joint pain, severe bone pain, tremors, dyslexia, severe stuttering and speech problems, virtually no word recall, paranoia/irrational fears, exhaustion/lethargy, depression, and extreme introversion. These symptoms are much worse than they have been in a long time; since the beginning of 2008, actually. I can't decide if they're worse or not. In any case, I'm extremely uncomfortable. I could have three weeks left to suffer (or more), but after that I should start improving. However, I will likely relapse every four weeks (approximately) for two or three days, which is normal. BUT I will be getting better!! I have already started to see some improvements in certain symptoms! :)

I am continuing to ask for your prayers as it is most definitely not an enjoyable experience being this sick. I have had to take a lot of time off of work, can't do much of anything, and can barely even leave my house. I will update you all as soon as I start feeling better. Thank you so much for praying for me! God bless you all!! <3

Post Dr. Appt

My doctor appt went very well! I was told that everything that is happening is "normal." But I was also told that the sickness I am experiencing [the one I was supposed to get right when I started my meds] could last for up to 4 more weeks :/ ...And right now I am too sick and weak to stand up for more than a second. I will really need your prayers over the next few weeks!

Month 1 Update

Yesterday marked the completion of one month on treatment. The first three weeks or so went great! I was in almost no pain, energetic, and almost felt normal. But the past week and half or so has brought me exhaustion, sickness, pain, on and off partial blindness, and frustration. I guess, with the treatment, Lyme is an on and off kind of thing. So I can only pray that for the most part, it's off! I have my first follow-up appointment on Tuesday at 0930, so I hope that will also give me some answers. I am feeling fine so far today; usually the brunt of the pain starts in the evening. So please keep me in your prayers as I am finding out so much more about my condition and trying to juggle my life around, never knowing how I'm going to feel and when. Thanks! <3

E n e r g y = < 3

Well, today is day 18 of treatment! I feel pretty great! I have a lot of energy for the first time in FOREVER!!! I feel like I'm 17 again :) I still have some eyesight problems and some bad pain, but in general I feel a lot better! I think I'm sick right now, though, so I'll update you all more later.

The storm before the dawn...

Well, the doctor appointment went great! I have started treatment - I'm on 2000 mg of antibiotics (Cefuroxime) a day. Two (GIANT) pills every twelve hours. They leave my mouth tasting like metal. Please pray for my upcoming pain and sickness. I am trusting God to get me through this. I will update you when I have something new to share - if I'm not in too much pain to write or think, that is.

[As I'm writing this, my symptoms from the medication have just hit. Pain. Everywhere. Please pray for me!]

Praise

I'd like to share something that impacted me today. I am going through the devotional book Thirty-One Days Of Praise by Ruth Myers, and today is Day 10, which says:

"I choose to thank You for my weaknesses, my infirmities, my inadequacies (physical, mental, emotional, relational) ...for the ways I fall short of what people view as ideal...for my feelings of helplessness and inferiority, and even my pain and distress. What a comfort it is to know that You understand the feeling of my weaknesses! ...and that in Your infinite wisdom You have allowed these in my life so that they may contribute to Your high purposes for me.

I specifically thank You for: [Fill in the blank]

LYME DISEASE

Thank You that many a time my weaknesses cut through my pride and help me walk humbly with You...and then, as You've promised, You give more grace-You help and bless and strengthen me. Thank You for all the ways I'm inadequate, for they prod me to trust in You and not in myself...and I'm grateful that my adequacy comes from You, the all-sufficient God who is enough! Thank You that I can trust You to remove or change any of my weaknesses and handicaps and shortcomings the moment they are no longer needed for Your glory, and for my good, and for the good of other people...and that in the meantime, Your grace is sufficient for me, for Your strength is made perfect in my weakness." [<--I believe this last section is what is happening to me, with my doctor's appointment getting moved up!]


"So to keep me from being too elated by the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from being too elated. Three times I pleaded with the Lord about this, that it should leave me. But he said to me, 'My grace is sufficient for you, 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. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."
~2 Corinthians 12:9-10

"And we know that for those who love God all things work together for good, for those who are called according to His purpose."
~Romans 8:28

"As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God!"
~Psalm 40:17

"Not that we are sufficient in ourselves to claim anything as coming from us, but our sufficiency is from God."
~2 Corinthians 3:5

M I R A C L E !!!!!!!!!!!!!!!!!!!!!!!

SOMEONE CANCELED AN APPOINTMENT, AND I CAN SEE THE SPECIALIST ON THURSDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 2 days from now!!!!!!! Praise God!!! Please be praying for me and my family, that it wouldn't be too overwhelming, and that once I start treatment I won't get too sick!!!

It isn't broken!

I went and got my foot X-rayed today, and MY FOOT ISN'T BROKEN!!!! Praise God! It is a "deltiod-ligament sprain." ...I'm pretty sure that's how he put it. [It's very rare, actually] It will probably take another 3-5 weeks to heal. Then again, my body has a very slow healing process since my immune system is so weak right now, so I would be very grateful for prayers for a quick recovery. Thanks!

Oh joy. Just what I was wishing for. . .

So on Sunday I was playing line soccer with my youth group (no shoes) and I got kicked in the foot by someone strong with giant foot. Since then, it's hurt and I've had shooting pain down my foot and up to my knee. I think I may have broken [fractured] my ankle. PLEASE GOD DON'T LET THIS BE THE CASE!!!!!!!!!!!! I will probably go to Urgent Care on Monday to get it X-Rayed. Prayers would be so appreciated!!!

My life is on repeat

I apologize, an update is long overdue. I have been busy with finals, finishing up school (I'm two weeks into my summer, now!), and a family vacation last week.

Right before my family vacation, which started on 16 May, I started having more pain and deeper pain than I'd experienced in a long time. Since then, it's progressed to where I'm in a lot of pain on a regular basis. I have deep, shooting pain in the core of my arms and legs, a stiff back and neck, swelling in my hands and feet, inflexibility/stiffness, flu like symptoms, and exhaustion.

But there is something different about me this time around - I am not going to sit on my hands and let this thing take over me. I am not putting my life on hold AGAIN. So I am planning on doing everything I normally do up until my treatment starts (22 July). I'm going to be actively involved in Civil Air Patrol activities, my own life, going outside, and doing regular things even though I'm going to be in lots of pain.

So, again, I ask for your prayers. I need God to sustain me, renew me, and refresh me as I go about my summer and my "normal" life. Thanks to you all!!!!