Tuesday, October 23, 2012

ice-picked

So treatment is plugging along.  My Lyme doctor pulses antibiotics and each "cycle" targets certain co-infections of Lyme.  We trudge on.  Recently, I started some Bartonella treatment.  Remember those red spots I referred to?  I started treatment and I got about 100 more of those spots as I dealt with killing the bacteria.

My doctor likes to refer to the "onion" analogy, that as we treat, layers of the onion are being peeled away so sometimes new symptoms can arise.  I've been headache/migraine free for quite a while now, but this Bartonella treatment has brought them on full force again.  But it isn't just the migraine or week-long headaches.  A new symptom -- ice pick headaches.  Those of you who have had them know what I'm talking about.  It's like a lighting bolt that strikes your head intermittently and mine lasted a few days.  It's not constant (thankfully!) but it comes and goes and is awful!

With a family history of aneurysms, I kept going back and forth about whether I should go get it checked out.  Because, even though I have Lyme, and the symptoms where most likely Lyme related, when it's your health, you don't want to miss something that could be more devastating.....especially something that can be caught early.

I waited three days, and fairly confident it WASN'T serious, I went ahead and got it checked out.  A CT scan showed nothing abnormal and the doctors told me it was "just" a migraine.  Further investigation showed that wow!  A symptom of Bartonella is "ice-pick headaches".    I thought it would be helpful to link you to this helpful list of symptoms associated with Lyme and it's co-infections.

Lyme and Co-Infections
"Bartonella
Brain Fog
Fever
Foot/heel pain
Ice pick headaches
Photophobia
Tachycardia
Bowel problems IBS/IBD
Swollen Glands
OCD behavior
Anxiety 
Endocarditis
Retinitis 
Peripheral Neuropathy
Rapid relapse off abx
Immediate illness following tick bite
Subcutaneous nodules
Swollen Joints
Swollen lymph nodes
Psychiatric problems
Shin pain
No response to previous abx
Plantar and costal margin pain (plantar=soles of feet costal margin = The lower edge of the chest (thorax) formed by the bottom edge of the rib cage)
Rapid mood shifts
Development of these symptoms during Babesia Treatment"

Friday, September 28, 2012

accepting

A recent question was posed to me by a reader of this blog who happens to also be a mom.  I thought I'd share it and my answer.  Being chronically ill with kids is something that needs a lot of encouragement because, well, it can be darn hard and DIScouraging.

Q: Life is looking grim.  Life goes on around me and I think my kids are just used to this as my "normal".  I feel like they don't view me as just sick anymore - they view me as "this is how mom is now".  It's not what I thought my job would be. I beg God to help me but I feel like it just ends at begging.  Is that the lesson?  To stay in a begging state?  What do you do when it's like that?

A: I am SO sorry.  I think it's a grieving process.  You know, denial-anger-bargaining-depression-acceptance.  You sound like you are in the begging/bargaining phase and a little depressed.  Losing your health IS something to grieve about.  But you have to come to acceptance, and that sounds like it's next on your list.  I remember coming to acceptance and it made it a lot easier to cope and to actually get some things done instead of just lay there sick.  Even if it was one little thing a day, it made me feel accomplished because I knew what my limitations were and I had given up trying to impose impossible duties on my body.

Instead of looking at all the things you CAN'T physically do and that your kids think you are just like that as a mom (which I'm sure they don't and you won't be ill forever), look at yourself as being ill in this time of life and learn to lay aside expectations.  Do the minimum until you feel your body can do more and don't be ashamed of it.  The only way you'll get better is by saving your body and by asking for help.  It can be from your kids even.  You can ask them to do chores and if any friend offers help, ACCEPT IT no matter how they will "see" you (dirty house, etc.).  And if you have a friend who you can ASK for help, I'd do it.  Even if it's just something small like, "Will you bring us dinner one night this week?"  or "Can you take the kids today?".

God hears your begs but His timing might not be to let you feel relief right NOW so you are welcome to beg, but part of the acceptance of being ill (for however long or short) is saying, "Please help me feel well NOW, Lord, but help me accept it with a happy heart if your answer is 'wait'."

Wednesday, September 5, 2012

not depressed

Years ago when I was so ill but didn't know what was wrong, I was finally (or so I thought to be the final diagnosis) diagnosed with "Fibromyalgia".  I saw one of the best rheumatologists in CA and was referred to a "Fibro Rehab" clinic where they helped you in physical, social, and psychological aspect of your lifestyle/syndrome and I was told, "We can get you to have ONE good day a week!"  Being young and still confused as to why I was so so sick, that wasn't encouraging news.  I remember going home and crying that day.

But I figured since that was THE final diagnosis, I needed to make the best of it.   My husband was deployed in Iraq for 15 months and I was doing worse than ever physically.  My biggest complaints were pain and lead-weight fatigue that prevented me from doing even the simplest of tasks and even taking care of my toddler without help.  I would literally crawl to the bathroom, use the bathroom, then have to sit in there for 15 minutes or so before I could muster the energy to return to my bed or the couch.

Something that stuck out to me, though, and still bothers me to this day because of how I know others are faced with this same question and worse, were the multitude of inquisitions as to whether I was "depressed".  I got asked it so much I truly searched and searched my mind to see if I was.  I had a test I finally implemented when someone would ask.  I'd think, "Do I find joy in my daughter?  Yes.  Do I find joy in God?  Yes.  I am not depressed."

I wasn't unable to get up and move around because of lack of motivation or depression, I truly had a physical ailment that prevented me from mustering any extra energy to move.  But it's sad how many times doctors and people ask you if that is the cause of your problems because they truly just don't understand your disease or how to diagnose you since all tests come back "normal".

When my husband was deployed it seemed that the various doctors I saw would ask the depression question even MORE often.  At the "Fibro Rehab" place, I had a long initial session with the psychologist where I took a 100 question fill-in-the-bubble "test" (how awful is that when your brain is fuzzy?) and then after he interviewed me.  He asked me SO many times if I was depressed; he asked it 20 different ways.  He acted suspicious and acted like he was trying to trap me into admitting I was depressed.  Finally, after the 20th question, I lost it.  I raised my voice a bit and said, "I'm not depressed! I WANT to be able to do more; I WANT to clean my house.  I WANT to hold my baby girl and read to her!  I'm not depressed!  Any sadness I may harbor comes from BEING SO FRUSTRATED BY MY SICKNESS AND NOT GETTING AN ANSWER THAT PUTS ME ON THE PATH TO HEALING!  But it doesn't mean I'm depressed."

He stopped asking me about depression and scribbled something on his notepad.  Shortly after I began sessions at the clinic I was put on another path by a separate doctor that would eventually get me diagnosed with Lyme disease so I never did have to see that psychologist again.

Now, I should make a side-note here that a real symptom of Lyme can be depression and I do know some who suffer from this, so if you are depressed, take heart that there is hope to help with that aspect of your illness.  But for others of us, we haven't been depressed - we've just simply been so incredibly discouraged that no one could tell us what was wrong and help us get better.

I am SO thankful that I am doing so much better after 2 years of treatment.  I continue treatment and continue to heal.  Someday I hope to be fully well.  But the memories of those darker days when my illness was a mystery and it seemed that no doctor appreciated or tried to help and wished to label me as "depressed" is still fresh in my mind and it causes me to pray for some of you who are on this same journey of trying to find answers and being met with skepticism or just plain bafflement.

Tuesday, August 28, 2012

spotty

Ever since I was little I would get these little, bright pink "spots"....almost "pin-prick" looking spots on my torso and chest.  Not clumped together or in a rash, but just randomly here and there.  I would ask my mom what they were and she didn't really know and said maybe they were burst blood vessels but we never paid them any mind.

They continued to come and go throughout my life and to this day I still get them.

Last appointment with my LLMD clinic, I just casually tagged on a question to the end of my appointment.  I pulled down my shirt a bit and pointed to the little magenta pin-prick and said, "I get these sometimes...."  She interrupted and matter-of-factly said, "Oh, that's Bartonella."

"What?  Really?  I thought that was in streaks...like stretch marks?"

She said, "No, it can be, but I see patients come in all the time with those exact spots you're showing me.  It's Bartonella.  We see it all the time."

Still I said, "But just focused on my chest and tummy?  I never see them anywhere else."  I don't know why I was so incredulous, because, after all, I do have Bartonella.

The answer, "Oh yes.  A lot of people just have them located on their torso or chest.  Some have tons all over their whole front.  It is definitely Bartonella."

She wasn't concerned.  I mean, I'm on the right meds to deal with it.  But it really got me thinking -- I remember them from an early age and that definitely coincides with when I got my tick bite that resulted in a bulls-eye rash.  Ridiculous!!




Monday, August 20, 2012

filled

What if I don't have faith enough when.....

That seems to be a question a lot of people have when they think about the "what ifs" in life.  It can be a healthy person thinking about the possibility of getting seriously ill in the future, to something as simple as venturing outside the house with ALL of the kids at the same time :).

I'll tell you about my experience with this question.  Before I got ill, I honestly never really thought about it; mostly because, as most young people do, I felt fairly invincible.  When you have your health and youth, you don't really dwell on "what ifs" - you live in the moment and even with faith in God, you just don't consider much in the way of serious (I mean life-altering) trials.

So when I was slammed with a debilitating illness that had no name (at least until it was diagnosed!), there were so so many "what ifs" and a multitude of ways to question God.  Will I get better? Am I dying? Will the pain stop? Will I be able to care for my children? Is there a cure for what is ailing me? And so many more....

The question of "What happens if I don't have enough faith to make it through..." never crossed my mind in the beginning of my disease.  I KNEW God was with me, I knew that He orchestrated my life from beginning to end and this was a part of it.  I didn't know WHY, but I knew who God was and His character and that He wouldn't abandon me even when I felt the most helpless and in the most pain.  I grew a lot - God GAVE me the faith and molded it and shaped it and raised it up during those awful years of unexplained illness. He used friends and family to come around us and help with all the physical things I just wasn't able to do.

Then I was diagnosed and commenced with treatment.  Treatment can be just as awful.  New pains and  ugly symptoms arise and while you KNOW you're getting better, it's hard some days to put the pills down the hatch.  Lyme disease is such a WICKED disease.  This is when the "What if I don't have the faith to....'s" started for me.   I had tasted glimpses of feeling good only to be plunged back into yuckiness and I had 2 young kids now instead of one so each day my mind would play wars as I psyched myself up to roll out of bed. What if I just can't make it today?  What if my girls grow up thinking their mom never did anything for them?  What if my girls only remember their mom laying on a couch?  What if my girls only remember their mom being grouchy?  What if I NEVER GET BETTER?  These questions were all due to my lack of faith that God was taking care of me and that He KNEW my girls would have a mom like this during these years of their life.  When I paused and looked, I COULD see His grace in my life and theirs and that for sure they were being cared for in just they ways they needed.  And I saw many times that God allowed them to NOT need me in ways other children their age usually needed their parents.  He allowed me to spend those years "on the couch" without doing "damage" to my little ones.

I don't think there will ever be a time on earth when we stop wondering about how much faith we'll have when trials arise, but I know we can get better at it.  In my own life, I find that I go through many periods of trusting God through harry times and then have a few moments of slipping, only to be reminded that God has ALWAYS been faithful and is so much bigger than any of my "what ifs".

So take heart and take courage, and have faith that in any and all situations that you might find yourself in today, when you ask, "What if I don't have enough faith for ______________?" - God is able to GIVE you the faith you are lacking.  Rest easy in His embrace and cast your anxieties on Him.

Thursday, August 16, 2012

moved

On the plane ride over, my daughter colored a picture for her Lyme doctor. And then she asked me to help her write a note to her.  She asked me how to spell the following:

"Dear (Doctor's Name),
I don't like the yellow medicine.

Love, Georgie"

When we arrived for our back-to-back appointments (mine with one P.A in the clinic and hers with the pediatric P.A in the clinic), Georgie gave the beautiful picture to the doctor.  She giggled and said, "Georgie, I love this.  And I'll take this into consideration."

And then commenced the appointment.  I have been very impressed with how much improved my little girl is and so are the doctors.  BUT, it turns out my little girl doesn't complain much about pain.  In our house we don't badger or nag or tell her to tell us every little symptom.  We watch and observe so that we can get the best gauge on a five-year-old's symptoms.  I know my girl and if I told her to tell me every time she had an ache or pain, she'd start being hyper-vigilant about it and I want to just see when she feels it necessary to tell me about symptoms.  And she does!  But she doesn't do it completely we found out.

But this is fine -- this is what the doctor visits are for.  We found out she has some symptoms (we knew about) more often than she's mentioned and also some constant joint pain in her little wrists.  But thankfully no where else!! This is big!  Her first complaints were joint pains in her legs and those are gone!

She gets one more round with the "yellow" medicine and then she's done forever with that!  It seems that Babesia didn't really react to anything so maybe she doesn't have that infection.  Hooray!  Now we are going to focus on the Bartonella and then in January the hope is that she would be taken off the meds.  We are so excited.

My appointment with my doctor went well too!  We thought a few months ago that this appointment would bring the long awaited "maintenance" med routine.  But then some stressful events showed us that my body is just a bit more fragile than we originally thought.  Stress can cause flares if your body hasn't ridden itself of all of the bugs and mine just showed us that.  So while I viewed it as a "setback", the doctor viewed it as a gauge that there's still some infection present that needs attention.  It was quite a relief to hear that.  The Dr. reminded me that my stress reactions have become less and less pronounced and that shows progress and when I asked if stress would always flare me up, she said, "Absolutely not."  Once we finish treatment, and theoretically rid my body of the yucky disease, I shouldn't have any abnormal reaction to stress (than any other normal person).

We are stepping down my protocol (yes!!!) and hopefully in January, we've set our sights on getting to the maintenance med protocol (although we have to make it through the stress of Christmas before that appointment so we'll see how my body does!!)

It was a way more encouraging appointment than I expected. Onward and upward!!

Saturday, July 28, 2012

entertained

My 5 year old's view of Lyme:

Me: I'm sorry I couldn't play with you today because I needed to rest.  Silly Lyme disease!

Her: Yeah.  I think the Lyme disease in your belly is running away from the bad medicines.

Me: Yeah, I think so.  That's what the bad medicine does to your Lyme disease.

Her: How many Lyme disease is in your belly do you think?

Me: Well, I don't know....but I know that there isn't much left in you!  I think when you see the doctor next they will say you are almost better!

Her: I think there is like, maybe, ONE Lyme disease.......but maybe there are 8...because you never know with Lyme disease.

So true, little girl.

Monday, July 23, 2012

tired

-So I made it through....2 1/2 days of driving each way.

-I hiked through tick-infested brush without incident.

-I hiked...2-4 miles at a time!

-I had tons of fun with extended family and watching my girls interact with them.

So - how did my body fare?

-The drive surprised us (my husband and me) - in one way - I survived and didn't have any episodes like the last time I went on a long road-trip (2 1/2 years ago).  In another way, though, my body ached and ached from sitting for that long.  More than a normal, healthy person's body would.  And by the time I hit the bed, my joint pain had returned.  It's been a while since I've had joint pain like that.  Ugh.

-Each night, our ruckus clan of about 32 of us got together in a small little timeshare for dinners.  Normally group settings like that would have sent me reeling with light-headedness and fatigue.    This time?  I felt great.  I was tired in a normal mommy-of-three way, but after a night's rest, I was up ready to go on that day's adventure.

Overall, I'd say we had some setbacks, but we were pleased with how I did with the big road-trip. :)



Monday, July 9, 2012

on my feet

Well, after the hub-bub of last week and the week before, I'm finally starting to feel a bit more back to normal.  I've been able to do housework and run errands without much fallout from my physical stamina.

But just as I'm regaining my feet, I'm treading on shaky ground because for the first time in a long time (since getting ill), we are taking a family vacation -- road trip to be exact.  I am VERY excited, but at the same time just wondering what my body will do.  When we travel to different states as a family, I usually opt for flying while my husband and kids drive.  My last road trip was super scary because I had recently been diagnosed with Lyme and I started having seizures...while we were driving across 3 states.  It was scary.

I'm certain this trip will be nothing like that, but still, we are being cautious.  The next few days will be filled with packing and planning for a trip with 3 kiddos under age 5.  Fun times :)  I started making a packing list a few weeks ago and I think it's complete.  Now to execute it!

Let's pray my body can handle the driving!!

Thursday, June 28, 2012

Exhausted

Wow!  Has it been a month?  I've been up to a lot, but still have times that I struggle.  This month especially felt a lot like "two-steps-forward....one-step-back".  Things were busy and a bit stressful, and I'm sure that's why my body is paying.  Lyme LOVES stress and definitely shows its glee when I get a bit stressed.

Currently I've got ankle joint pain and I pulled something in my wrist (I don't think it's Lyme related), back, and neck.  I've got fatigue, but not as bad as it was when it was bad.  And my head is pounding. I'm on antibiotics this week so I know that has something to do with my symptoms.  But the good news is, my herx reactions are not as strong....they don't lay me out for days....they don't run one into the other without a break.

And I have to say that even just on THIS protocol, I've noticed improvements.  I started another  Babesia protocol (remember that yucky "paint medicine" a while back?  That was for Babesia...) tagged on to the meds I was already on and I got hit hard. It was a test to see if any bit of Babs was left.  Each time I started the newly introduced Babesia-fighter, one of the symptoms was "hot-flashes".  It was significant because my body temperature is almost always low and if anything, I get cold before I get hot (although this peculiarity has evened out after years of treatment for Lyme!).  But now, on my 3rd cycle of Babs. I am hot-flash free.

I also found out the reason for my EXTREME itchiness that would come and go.  I mean, SO itchy that I was drawing blood in my SLEEP.  My husband would tell me in the morning that I was asleep and yet scratching my legs SO hard.  This has come and go starting last year.  It usually lasts a month or so and comes every few months.  I tried OTC allergy medicine, hydrocortisone cream, mattress encasements (in case it was dust mites), every."itch-relieving".lotion.there.is.to.buy.  NOTHING helped.

Then one day after a recent blood work-up, my doctor's office calls and says my cortisol levels were too low and that I needed to start a med to fix that.  I started the new medicine and literally THAT night, the itchiness was gone....and hasn't shown up again.

While I feel so so much better and am able to do so much more and can actually go through a day or two or week without even recalling I have Lyme disease, there definitely are still small signs that the remnants of the bacteria are hanging on.  And that's why I love my doctor.  Going complete and all the way in treatment will make me WHOLLY better.

I emailed my doctor right before the previous cycle of this protocol to say that I just felt like I couldn't do it and is there any way we can change up the meds or something?  The answer was a kind "no".  And basically that I COULD get through it.  It was the first time through these years of treatment that I actually asked if I could change stuff up.  I've wanted to a hundred times, but I knew that if I trudged onward, I WOULD get better.  I think in this case, my glimpse of feeling nearly 100% for some months, only to be knocked down a bit when I started the Babesia treatment made me greedy; greedy for good health.  And it made me less willing to accept that I still have some fight left.

So, not surprisingly, after that email, when I started the next week of meds, it wasn't as rough.  And so it's continued.  Stick with it, and it gets better.  Each round gets better and better.

Taking the girls to the park
How have I been spending my days this month (that makes me so busy I can't blog?) - keeping the tv off and staying off of the computer whenever my kids are in the room, reading and loving on my littlest girl, playing with, interacting with, and teaching my older girl to read, and loving and nurturing our little foster son.  It's fun to finally get to be a "mom". I know I was when I was sick, but I was not the mom I wanted to be.  I just kept praying for the days when I could be involved in my kids lives in a different way without feeling physically awful or constantly irritable due to all the pain and malaise I was feeling.  And those days have come!!  I am just loving it.
Yes...as a mom, I had to give slip-n-slide a chance....or two....or three :)


So again -- hope -- I'm still struggling at times, but we are so seeing the light at the end of the tunnel and it just keeps getting brighter....








My favorite detoxes:
-Burbur drops (in water)
-Green tea (iced in the summer)

Those are really the only things I've found that make me physically feel better and the only things that when taken out of my routine during med weeks, make me noticeably more icky.  I do the epsom salt baths and it's always been hard for me to notice a difference.....except that they make me feel WORSE before they  make me feel better.  The detoxes above actually don't make me feel worse at all.

What are your favorite detoxes?  I'm always looking for some new ones?

Monday, May 14, 2012

reflective

Okay, we're just going to make this a big one since I keep promising it and things get in the way -- namely - a wee one who keeps me from getting a full night's rest, plus caring for my girls and him during the day -- even now, I've had to get interrupted about 5 times from writing this :)  But I LOVE it.  It means I'm well enough to do all of that and daily I'm so encouraged about it.

While I'm feeling so so great, here are some of the signs that Lyme isn't totally gone yet (and that's why we continue with treatment):
-I have bouts of memory problems....generally while ON antibiotics that are killing the "bugs".
-My appetite has yet to rise....generally I get a hearty appetite for a few days within a month's span
-I still pace myself during the day.  Living with a chronic illness shows you your limits, so it makes it easier as you get well, to know what might push you over the edge if you're not careful.


Here are some things that are noticeably better:
-I can walk.....far.....without it ruining the next few days :)
-I haven't sat in my wheelchair since December '11 :)
-I'm not irritable hardly at all :)
-I can keep up with laundry, cleaning, and teaching my daughter to read....all without needing to stop and rest :)



Now here comes the post that should be a separate one, but since I'm here and writing, I'm going to continue it.

I've been reflecting on the things Lyme has taught me.  If I hadn't had Lyme, I would never have:


-learned to pray "Lord, give me the grace to handle this day" each morning
-gotten over my phobia of throwing up
-learned how to "wait" - the way you should "wait" when GOD says "Wait."
-learned to drop my pride and accept help when I needed it.
-(and on the same note) learned to throw pride out the window and accept the fact that a wheelchair makes life so much easier when you don't have energy or are in so much pain.
-learned just how long I am able to "endure"
-seen just how committed my husband is as a friend and father
-witnessed the love of my family amidst a disease that can sometimes tear families apart.
-seen how much I took for granted when I was "well"

I know I've learned much more but those are the things that have come to mind recently.

Tuesday, May 1, 2012

icked

Wow - our whole family got sick right after I got the great news from my Lyme doctor that after about 3 cycles of a slightly different protocol we've been doing, that I will most likely get to go on a "maintenance" dose of meds!  That is huge!  We are so thankful.....but I still gotta make it to that point because as we all know, Lyme&Co. are really good at interrupting best laid plans.

So like I said, my husband fell ill, then my daughter about 12 hours later, followed by myself and my other daughter about 3 hours after that.  It was just 4-5 days of high fevers and body aches.  Not fun at all.  But there was no respiratory problems or stuffy noses so that made it at least not as bad.  Well, not so much for my youngest who already had a cough going into it and got diagnosed with pneumonia after that fever had its way with her.  (She is now better).

Anyhow - this new Lyme protocol had one added element to what we've been doing already -- we added an herbal med that fights Babesia.  This was just to "make sure the Babesia is in check" as my doctor said.  No problem....should be fine.  Well fast-forward to as soon as I started taking it -- I had pain in my chest and breathing problems.  I didn't even THINK it could be a herx reaction so I went to the ER thinking it might be bronchitis but thinking it was awfully odd that I didn't really have a cough....yet since my daughter had pneumonia it was one thought in my mind.  I also got so so so tired....but again, I was recovering from a not-so-fun virus.  A chest x-ray revealed nothing.

A few days later, still---chest pain and shallow breathing.  I went to my general practitioner and they did a chest x-ray too.  After it came back clear I finally realized -- this was a herx!  I had to start my Lyme meds at the very tail end of being sick so it all blended together.  But the farther I get away from the virus I had, the more clear these herx symptoms are.

(click for source)
AWFUL....I think it's pretty clear to me that Babs is still somewhat committed to making my body its home.  You know when you are supposed to take your medicine and you know the meds you are about to pop in your mouth are going to make you feel awful?  Well, tonight I actually put them back in the pill case.  I took all but that herbal fighter (because all of the other meds I have been taking for a few months now and my body never handled them this way).

Then after a series of conversations between myself and myself......and myself and my husband, I decided to take them after all.  There's no point in getting THIS far in the journey to beat Lyme only to have Babesia rear its ugly head later.  It also helps that my mom happens to be in town this week so she's able to help with the kiddos.

So anyway -- that post about the things that still show themselves even though I'm feeling nearly "normal"?  It'll still come but it's been sidelined by this unexpected awful herx.

Monday, April 16, 2012

busy

I will write more....I am preparing a post about how even though I'm MUCH better and definitely getting to the point of remission, there are still things that plague me.  Just to encourage those who wonder if it's normal.....yes, I say I feel awesome, and I do, but we can tell that meds are still needed to eradicate more Lyme buggers.

I'm busy, though, as our last foster child went home (so happy he could be with family!!!) and now spending a lot of time with a very very different age foster baby who needs constant attention (it's so much fun when they are teensy!).

Anyhow -- a Lyme post is forthcoming.  And know that I pray for those of you who I "know" through the internet....even if I've never commented on your blogs :)

Monday, April 2, 2012

exhilarated

Here's that story:

A week ago I went camping.  Normally, I'd go with our whole family.  They set up camp while I sit.  This time it was just my daughter and I (and a group of friends from church).  I was a bit fearful of camping....especially with my already infected daughter (her Lyme treatment is going well, though!).  I wasn't frightened of setting up camp or cooking, I was frightened of TICKS.  I think we all are -- we who have been so affected by the little teeny bugger.   It's hard to go put yourself in that environment voluntarily.  The problem is, most of us LOVED hiking and camping before we were stricken, so it's funny that a lot of my friends now have a huge fear of green beltways and pictures of forests.



I armed myself the right repellent and did thorough tick checks each night or after walking past tall brush (we tried to avoid it if we could), sitting on the picnic table, leaning on trees, or rolling in the grass.  We came home tick-free!


So, let me summarize what was one of the most encouraging weekends of this whole Lyme infection journey that has taken over my body.  I felt like a college student again! I went hiking and enjoyed it and had enough energy to do so! I was able to enjoy the scenery instead of hanging my head while huffing and puffing.  I went swimming in a lake!  I went cliff jumping into that lake (picture of that to come)!  To get there I had to rock-climb the cliff.  Most people take that stuff for granted.

I felt NORMAL.  There were no ill-effects later.  I literally came home to my husband and and said I felt younger and more like I did when we first met.

This is hope!  From bed-ridden to cliff jumping.  That's huge.....long-term treatment for Lyme WORKS. I'm still on meds about 2 weeks out of the month but I'm not herxing as much.  I remember first being diagnosed and searching for a blog or testimony from someone who had greatly improved or improved completely!  I could find nothing.  No hope and I began wondering if I would ever get better.

And now I know -- all that hard work and I-wish-I-was-dead moments are paying off finally.  I still have a bad day here and there (like this past weekend where I was in bed all day), but the bad days are really widening apart!

I'm praying for you!!

Thursday, March 29, 2012

thrilled

.....to tell you that I have a very encouraging story to tell.  One that gives hope to sick Lyme friends.  It should be ready by Monday.

I'm on one of two of the toughest days of my current Lyme treatment protocol right now so I'm trying to rest up.  My next week of treatment is starting to become a breeze!  Good news that my immune system is not shocked and overloaded when the killing begins :)

I promise you a story!

Monday, March 19, 2012

progressed

(click pic for source)
Late last year my husband and I decided to embark on a journey and see where God led us through it.  We have wanted to adopt for a while, but only late last year did we realize my body was making enough progress for us to consider it and maybe even go through the paperwork to get ready for it.

We considered a lot of different options on how to do it and ended up deciding to do it domestically.  I'm not at liberty to discuss much on this blog about it, but I can say that we have a little semi-permanent addition to the family at the moment.  This addition may stay a bit or may stay a while, and this blog isn't for THAT but to tell you how my Lyme body is handling it.

My, how we've seen God really continue to keep my body on the path to healing since we began the process to hopefully add another one to our family via adoption.

I'm by no means completely well yet, but I'm well enough to care for THREE kids without feeling my energy wane.  And that is huge!  Energy was a very large problem for me when I was first diagnosed and it was only late last year that we started to notice a huge improvement in that.  My pain is nearly completely gone.  Sometimes on treatment weeks I'll have some trouble with that but not otherwise.

So all this to encourage you that there is light at the end of the tunnel and just because you're struggling and maybe can't do some of the things you've wanted to do with your life, don't count yourself out!  Healing is a possibility through hard work, endurance, and lots of prayer.  You can still have goals outside of getting well and still have "dreams".

God has been so kind and gracious to our family to allow me to feel well enough to try to expand our family a bit more and we trust Him through the rest of my healing journey to get me to a place where I can say I'm not complaining of any symptoms!

Thanks for praying for me and thank you for CONTINUING to pray for me.  I'm praying for you all!

Tuesday, March 13, 2012

like taking a ride

So for my birthday, my husband bought me a bike. I had originally mentioned to him that I hoped he didn't buy me a bike because it would just remind me of what I "couldn't" do anymore.  I had sold my bike a few years back because it was taking up space and I was in no shape to ride.

But then my husband made a funny face -- apparently he was planning on buying me a bike and I had just ruined the surprise.

He then explained his reasoning - "You're feeling a lot better!"  He said even if it was just a ride around the block, that wouldn't I want to?  And that I was heading UP, not spiraling down anymore.  he changed my mind.  I let him get me a bike.

And I'm proud to say I finally got out and rode it.  Yes, I did only ride around the block, and yes, that was enough for me to know that as fun as it was, if I did more, I would probably regret it.  It's funny how I can run errands, clean the house, take care of my littles, but one little ride around the block can show me my limits.

But it wasn't discouraging!  I rode around the block!  It felt good!  I wasn't wearing proper attire or anything.  But it felt like a new step....I've been doing great and it shows I can start up with baby-steps on the things I used to love to do!  I'm so very thankful!

Tuesday, March 6, 2012

good

When Little Girl and Momma are both on an "off" week - life is good :)

Friday, March 2, 2012

impressed

My faith in non-Lyme-literate doctors has gone up!  Most stories we hear are about the ones that disregard you and the ones that tell you it's in your head or get vehement and make you leave.

Well, I've got one to encourage you that, even in a state like mine where nearly EVERY Lyme-treating physician has been run out by the state board of health, there are really great ones around.  Now granted, he isn't an infectious disease doc, but still, the level of genuine care and interest he took in me and in Lyme disease is one that should encourage us that we will be heard and soon we won't face the stigma that most of us do constantly.

I had my follow-up with the cardiologist.  All was normal as we thought, but after, the older doctor just sat with me for 20 minutes asking me about Lyme.  And not in a sneaky, condescending way, but in an earnest "I-want-to-know-more" way.  He often would preface a question by saying, "Now, I'm not trying to quiz you, but just because I want to learn....." and he took down notes and said he had looked up my doctor and stuff and was just fascinated and really wanted to know more.  He didn't cringe when I told him how many antibiotics I take at one time, and when I told him they were "pulsed" and explained that, he interrupted and said, "OH!  So the point is to get your immune system to take over and get it strong, right?"  Wow!  It was so nice to sit in a doctor's office and not feel worried that I might have to start defending myself or my LLMD.

Anyhow -- just wanted to share so that it might encourage some of you!

Thursday, March 1, 2012

aware

...of the beating of my heart.

Many Lyme patients can suffer heart complications related to Lyme&Co.  Therefore, it's important to pay attention to symptoms and let your doctor know even if you have the slightest of heart symptoms.

I've had little ones all of my life.  As I've gone through treatment, I've experienced more.  My LLMD has been keeping a close watch on these things but as you know, over the holidays I was hospitalized for some chest pain and pressure.  While all the tests were normal, my LLMD wanted one last test to just rule out any sort of problem - a nuclear stress test.  This that test where you get injected with an isotope and get a pic of your heart then wait and walk on a treadmill for 10 minutes and get injected with another isotope and then get another pic of your heart.  I did it last week.

OH MY -- the treadmill workout was more exercise than I've done at one time in more than 2 years.  I had to lay in bed all weekend (not to mention the added awfulness of having a virus show up the next day).  And then my cardiologist wanted me to wear a Holter monitor for 24 hours after to also just make sure nothing funny is going on.

Tomorrow I get my results and I fully expect them to be normal (both the nuclear stress test and the Holter monitor).  But I thought I'd write this to send out the word to not take heart symptoms for granted just because you have all this other stuff going on in your body.  It's definitely better to be safe than sorry.

Thursday, February 23, 2012

composed

So this week I started meds again after three weeks of being off of them.  That is the longest I've been without the medicine since I started this whole thing in 2010.  I did so so well on those three weeks and didn't ever plateau.  Good sign my body is finally learning how to deal with those spirochetes!  But the real test was going to be going back ON the meds.  If I crashed hard, it probably meant that three weeks was too long and that I might not be as far along as we'd like (moving toward a "maintenance regime").  So with trepidation I embarked on Monday with the first handful of pills.

I felt weary.  My daughter caught the nasty flu that is going around (fever, chills, aches, etc) and at the same time started HER first treatment for her Lyme disease.

Tuesday came and again, down the hatch went the pills and by late afternoon I was stuck on the couch.  I was getting pretty discouraged.  Not to mention that my little girl was healing from the flu AND fighting spirochetes.  It was hard to tell what was flu and what was possibly herxing.  My mama bear heart doesn't like to see her in what could be, in a lesser degree, pain and lack of energy that I've felt.  On top of that, we were in talks with her doctor all day because she had an "adverse reaction" to one of the drugs.  We discontinued it and are waiting to see if the mean patches of hives goes away (and it is decreasing...cuplrit: Septra).

By the end of the day I was feeling awful and discouraged over my little girl and over my seemingly bad response to meds and how I must not be as far along as I thought.  I prayed.  I prayed that "tomorrow You will give me the grace to face the day".  I pray it every morning when I get up....especially when I feel overwhelmed at the prospect of caring for the kids and feeling yuck all day.

And when I woke up the next day and sat up, it was hard to tell what would happen next.  I went about our morning routine, swallowed my pills, and guess what?  I had renewed energy.  Yes, I could feel some herxing going on (air hunger, etc), but my energy was so that I dusted the whole house (at my own slow pace), did 4 loads of laundry and folded and put them away, and cleaned one (out of 3) bathrooms. All that WHILE caring for the kiddos.

This is a new thing for me.  I've never in the middle of treatment been able to just go about the day doing MORE than I usually do. Praise God that it looks like my body is getting the upper hand with this disease!

This morning I woke and again have *enough* energy to care for the kids, etc.  I added a real killer of a drug to my regimen (well, the doctor did) today and I'm anxious to see if I herx.

My daughter has perked up a lot and is playing pretty normally, and she just said, "Mom?  Are you going to dust today?"  This is the same girl who thinks dads cook dinner in every family.  She noticed it was different than my usual "on" week.

So yay!

Thursday, February 16, 2012

encouraged

Obviously with Lyme there could be backsliding, but we are noticing that the "downs" are not as severe as before and the "ups" are quite incredible!  Thank you, Lord!  And thanks for all your prayers and continued prayers for healing!!

Wednesday, February 15, 2012

like an expert

I was thinking recently about how much more "comfortable" (if that word can be used with Lyme Disease) I am with things I was SO not comfortable with in the beginning of my illness.  Now that I'm nearly on the other side (praise God!), it brought me a chuckle the things I just matter-of-factly roll with now.  I have become:

-an "expert" at swallowing 4 pills at a time (instead of just one and gagging)


-an "expert" at dolling out 160 pills per week into a weekly pill case


-friends with my pharmacists (they've chased me down in the middle of the store to tell me I forgot to pick up a prescription and they recognize my voice on the phone now.)


-friends with my phlebotomist 


-an "expert" at knowing which vein will be the best on blood draw days


-a "poop" expert (take that however you'd like but Lymies will probably understand)


-a pain "expert" 


-a "Lyme-explainer-in-one-minute" expert


-a "symptom antenna"


- a more patient person


-a more grateful person


-a better pray-er

What things have you all become "experts" at during your illness?

Saturday, February 4, 2012

ponder-ful

....if that is a word (which it isn't) :)

We got back from D.C last night and brought with us the news that yes, our daughter has Lyme disease.  But instead of being disheartened and discouraged, we have been choosing to look at all the great ways we feel cared for by God in the process of getting her diagnosed.

I cannot say enough how much we love and respect Dr. J and his staff.  I really was fighting a losing battle when I went to his clinic the first time  and now, a year and a half later, I am nearly ready for "maintenance" meds (where basically I'll feel normal and healthy and just do meds once a month to keep reminding my immune system to do its job); I feel like I'm on the winning side of the long battle with Lyme! We are do indebted to them and have always felt so comfortable with their treatment plan.  It's tried and true and we love how on top of research Dr. J is and how willing they are to work with little concerns we have about certain drugs or certain treatment ideas.

And now that they have started to accept young pediatric patients, my apprehension about them being able to treat little ones has been assuaged completely as we have learned that their pediatric P.A (who works directly with Dr. J) was sent to train with Dr. Charles Ray Jones.  Oh my!  He is THE best pediatric Lyme specialist in the world.  So now we basically have input from two of the best Lyme doctors in the care of our daughter.

Their treatment plan and evaluation of Georgie put us so at ease and I don't feel like I'll be overloading my daughter with drugs.  They explained EVERYTHING so it all made sense and they made her feel comfortable as well.

I am confident that our daughter will be getting the highest care and will be healed just as I have been and continue to be.

Thank you, Lord!  And thank you all for praying for us!  If you have any questions, please email me!  I'll update more about my appointment later.

Tuesday, January 31, 2012

resting on the Rock

I guess just about every Lyme mom or dad has to come to this part of their life at some point or another.  Ours is rearing it's head now.  We've put it off for a year just watching and waiting and taking copious notes and getting no answers from our regular doctors (at no surprise to me).

The more I've learned about Lyme, the more my husband and I have been convinced that both our children probably have the bacteria in their body.  But the wisdom of my Lyme doctor told us to wait....watch...."you'll know".  So that's what we've been doing.  I'm not one to jump up and take my kids in to the pediatrician or ER for every little thing, so maybe this has been a bit TOO long in waiting.

Our oldest has definitely shown signs and symptoms for the last year or so and we did get her tested.  Tomorrow we fly to D.C to have our appointments.  Mine, a regular check up (if anything is "regular" about Lyme), and my little darling, to be diagnosed (or maybe get a clean bill of health....I hope!!!).

So please pray for our appointments and pray for Matt and me as we are resting on the Rock (our God) and just hoping against all hopes that our little girl somehow did not get Lyme disease in utero.

Thanks!  I'll give an update when we get back, but I will say that this blog will not be about my daughter.  It shall remain almost solely about my joys and struggles with Lyme.  Your faithful prayers deserve an answer about my little girl, though, so you will get that!

Wednesday, January 25, 2012

like I have a second wind

....after seeing this picture:
Via


Keep on going!   Just around the corner might be your sparkling new, WELL beginning!

Monday, January 23, 2012

breaking for air

I was feeling fairly good for it being my first week of meds last week and then my little one showed some signs of a minor (but could be major if not taken care of) infection.  I thought our pediatrician would tell us to come into the office and do a quick test and then send us home with antibiotics.

I was wrong.  Their office was just closing (at noon!) so they told me to go to the ER.  All of the sudden I felt dragged down with the possibility of pulling along two little monkeys in the germ infested ER.

Thankfully my husband was able to get off early and take our oldest with him since they had to go to AWANA with her that night anyway.  I thought it would be a simple ER visit with the little one and so I packed for such and held her.....for some time....and then it all started crashing down.

Poor thing did NOT have an infection like I thought but had something else entirely.  It wasn't all together terribly serious but it was enough to warrant an admission to Children's Hospital overnight and for the next day.  So from noon to midnight I was comforting a very uncomfortable little girl until my husband could arrive to take over.  And during that time I was very concerned for the little wee one and mentally trying to figure out where our oldest should go overnight.  All the details were worked out on an almost-dead cell phone.  That is a pile of anxiety!

And by the time all the blood was drawn and I.V was placed and baby was calm and at peace that Mommy and Daddy were by her side, I could feel myself needing to just remove myself from the place and re-charge.  I would have stayed overnight with her but the wisdom of my husband and my gut feeling were both telling me that I needed to go try to get sleep in my own bed to be ready for round two the next day.

And so I did.  When I hit the bed I was shaky and weak and in pain.  The pain, I think, was mostly from holding my little girl all day and in all different positions.  I took my evening meds and slept.

I got up early to try to go relieve my husband before it got too late into the morning and by the time I sat through traffic to get there it wasn't as early as I had hoped.  But things were good.  She wasn't ready to be released yet, but my husband had gotten rest and so had she overnight.  Good news.  He told me to figure out what needed to be done that day that couldn't be rescheduled.  One thing was a routine doctor visit for my eldest.

So I did that but raced through it and raced her back to her gracious babysitters and was anxious about the littlest.  When I got there she had done what she needed to do to even think about getting released so we were all a bit less apprehensive.  She was happy to see me but now was also more perky and was needing of someone to lean over the hospital crib and be with her.  It hurt my back so!  But I wouldn't have NOT done it in a million years!

It was so nice when some of the tubes came out and I was able to sit down and hold her!  We were finally released and our little girl was as good as new.  We took her home and felt exhausted; both of us. I felt so sore, but still, I felt it was from all the holding and uncomfortable chairs.  We've been catching up on exhaustion for days.

It's been 5 days since that all began and I would say the last two days, even though at home, have been really tough on my body.  I tried a mud bath detox (more on that in another post) but ended up feeling awful the next day.  When I went to bed last night I had that feeling where all your organs seem to be inflamed and it took me a while to get into a good deep sleep.

This morning was the first day that I felt I wasn't drowning under water.  Whew!  Thank you, Lord!  I started week 2 of antibiotics today.

Even though I've had some down time and feeling pretty bad, I'd say I'm still thankful that with how much stress all of the long weekend was on my body, I'm bouncing back a lot faster than I used to.  This type of deal a year or two ago would have set me back 2 weeks at the least.

Good job, immune system!  You're learning....and that's precisely what we've been trying to teach you.

I sometimes wish that I could "speed heal" - no distractions, nothing - except the meds and me.  I sometimes wonder what it would be like if maybe I could just heal without the stresses of life.  But that would make me a hermit, right?  You know what?  Healing that way would probably be a lot harder and so much more discouraging.

The way it is now, even though there are set backs and things might not be going as fast as I'd like them to, at least I have loving friends and family to cheer me on and pray for me.  I get great cheer-me-up interaction with my silly kids and funny husband.  I think this is the way to go to heal from this disease :)

Thursday, January 19, 2012

well....considering

...considering for the last month I've been traveling. I flew to my hometown to spend 3 weeks there with my girls and husband, and then boarded another plane to go all the way across the country to visit my grandparents.  Then finally flew home.  Home-Sweet-Home!

Now, I had 2 weeks of treatment - smack dab on Christmas week and New Year's week.  With traveling and all we were sort of holding our breaths waiting to see how my body would handle it this year as opposed to the bad last year.

I did so much better!  I definitely had some down days but they were few.  The thing that excited us the most was how my body reacted to travelling.  I didn't need any recovery time!  The next days following being on a plane were normal and I didn't suffer from lagged energy.  We are so thankful to see this progress!

I even got to have pictures taken of me by my brother-in-law (and sister with a second camera) who is an awesome photographer.  And as I look at them, I see that my body is looking healthier.  We are thankful and continuing to pray for complete healing.

My brother-in-law is talented:


Now I am trying to focus a lot on detoxing.  I think that's where most of my problem lies lately.  I feel like the stuff I do isn't enough.  Based on some other Lymies reviews, I am going to try mud baths.  And then of course discuss things with my doctor in a few weeks.

Praying for my fellow Lymies!

Friday, January 6, 2012

wiped out

So some of you know that just two days ago I was admitted to the hospital.  I hate going to the hospital, probably like many of you.  Lymies hate going because a lot of the time we know better what our bodies are doing than the doctors do.

I usually wait and wait until I think it's a serious enough problem to be seen.  Well, this time I didn't want to mess around.

I had very intense chest pain that spread into my left arm.....um....hospital time for sure. Lyme disease can cause heart problems and I wasn't about to just ignore it (okay, I tried to ignore it overnight and then succumbed and went the following morning).

I was out of town, though.  So my mom took me to the nearest ER and thankfully it was empty.  They brought me in and thought for sure the problem would be solved and for sure I couldn't be having a heart attack.  That made me feel better.

Then they did an EKG.  Doctor looked at it and walked away.  They gave me some Torredol for the pain (which didn't do anything) and then the doctor came in and said they'd be admitting me and doing a number of other tests.

They moved me to another room and did another EKG.  Then they gave me Morphine for the pain....it was pretty bad.  Morphine took the pain down to a five.....honestly I wasn't there for pain meds, just there to make sure I wasn't having a heart attack.

While waiting to be taken for an echocardiogram (ultrasound of the heart), I had a "seizure".  One of my half body twitches where I'm sort of coherent.  It got pretty bad and the nurses and doctors were buzzing and then it was decided (as if it weren't before) that I would be spending the night.  Thankfully they got all the tests done before the doctors left for the day.

What they didn't know yet was that I had to get on a plane in two days.  So spending the night and possibly spending a whole day at the hospital the next day was bad because I wasn't NEAR ready to go (packing and such).  One doctor even said I was be there for a FEW days!  Gosh, this whole ordeal was turning into a nightmare when I was pretty sure I was fine since they seemed to indicate my heart looked good.

But still -- echocardiogram.  It was FUN to see my heart from all different angles!  Not something most people get to see in their lifetime.  The tech said "unofficially" that I probably had nothing to worry about.  You know how they aren't allowed to say anything to the patient about whether the ultrasound is bad or something....she was nice, though and tried to get me a dvd of my ultrasound so I could watch it whenever I please :)

Next up was the EEG.  This is wear they measure your brain waves to see if there is seizure activity.  They put a weird cap on and put tons of gel (that is hard to get out afterward) and then for like 20 minutes you lay still and close your eyes.  Well it just so happened for me that my arm
started doing it's violent twitching during this.  I KNEW it wasn't a seizure per say, but I'm happy I was actually twitching when they had my brain hooked up.


And then the MRI with AND without contrast.  That wasn't so bad. I've done it before....twice before.

Then all the docs went home.  No reading of tests, nothing.  Just me left to stay overnight.

The next day we had to scramble to beg them to please let me go; to please get the doctors to come read the tests because I needed to leave the next day to fly out of state.  The nurses were wonderful and I thought we were getting somewhere and then the questions came.

New doctors came in.  Each one asked, "WHERE were you bit by a tick?"  And I told them Northern California.  "WHEN did you get diagnosed?"  "WHAT meds are you on?  NOT doxycycline?  THREE antibiotics at the same time and none are Doxy?"

Oh dear, it was too much for them to handle.  One said I might need to stay longer.  But couldn't tell me why.  Yikes.  I had thought I breezed through without the judgmental stares and questions but here they were.  Then, as soon as they came, they left and finally, the cardiologist and neurologist came to give me the go ahead to leave.

Apparently my heart had some issues but they were NORMAL issues and I needn't be concerned.  My MRIs were normal and my EEG was normal!  So she said that twitching must be stress related seizing.  I could have told her that but I was glad she was concerned to do the EEG.

My whole issues (chest pain and seizing) they decided to attribute to stress.  I KNOW it was stress, I just had never felt that intensity of pain over my heart.  There was a particularly stressful moment while on holiday that I am fairly certain just pushed my body over the edge.

But here I am, on the second phase of vacation visiting grandparents and I have bounced back considerably. I've had the chest pain on and off when things here get a bit stressful with the children but for the most part I have 60% of my energy.  I don't feel awful and I'm not on a treatment week.

So there was my adventure.  And sorry I couldn't think of anything else to write about.