meh

There really is so much to update on but I've been lax.  We are so close to a final adoption of our little guy and I know after that I will be inclined to write a lot more on here.  But here are some snippets:

*Jan 2012 - June 2012 = a steady INCLINE in my health.  A super, fast-forward moving ahead and we were so so pleased and thankful and so were my doctors!  They predicted I would be starting a "maintenance" regimen soon.  My protocols started getting me to that point....until....

*June 2012 - January 2013 = ever so slow DECLINE - not enough to make a big deal or put me bed-bound, but enough to leave us all scratching our heads.  Even my doctor. My last appointment in January had  them quite confused and I think with the holidays my body sort of surrendered to the decline and I sunk a bit under water because I had been treading for the last 6 months.  With a lot of investigation and true medical detective-ness, it was regrettably determined (and very light-bulby for me) that I was RE-INFECTED around the middle of last year.  More on that in another post eventually.  

I'm sadly feeling symptoms again that I had not felt in a couple years, and having to re-do some protocols that were already completed.  While it won't take as LONG to treat the newly re-introduced "bugs", it is quite disheartening to my husband and me to have tasted almost near perfect health again last year, to going back 5 steps now and feeling really icky.  I am so thankful to be in the care of awesome doctors, though and I am confident that God will get me back to at least where I was before I began the decline again, in His time and most hopefully (and prayerfully) within a few months.

*My second little goose was diagnosed with Lyme and co-infections in January.  Quite sad, but such a huge explanation for some very sad symptoms.  She is being treated currently and is doing great and we've already seen improvement in her health!  Praise God!!  I will write more about her symptoms in another post soon because I think it's important to at least make others aware of what congenital Lyme can look like in toddlers.

*My oldest gooseberry is doing GREAT with her (now) year of treatment.  Her symptoms have improved SO SO much and she's nearly there to complete healing.  She's got some pesky Lyme stuff still hanging around, but she's right on track in her treatment and should be finished soon (Lord willing!)

Well, I do most definitely feel "meh" if that can be a feeling.  I long for even just an ounce more energy to make the day more bearable, but am so very thankful because I know even just a year and a few months ago I was not doing as well as I am now.

I will write again....hopefully soon :)

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"

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'."

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.

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!!

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.

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!!