To read my story from the beginning...go here

About Me

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Well, I am a mother of a 21 year old who is trying to find his way in this world. I am a military wife to a man that I adore. I am the daughter of two of the best parents in the world. I am a friend to those that are a friend to me. I am a teacher. I am a believer. AND NOW, I am a Lyme fighter!

Sunday, September 10, 2017

Might be time.



About 4 weeks ago, I had to go to the ER.  My heart rate and my blood pressure was through the roof.  As many things as I have going on, high heart rate and high blood pressure generally aren't in the equation.  Unless, my potassium tanks.  And in that case it had.

When I went to the ER, they got me in right away, but we all decided (especially after tests and blood work) that my high heart rate and blood pressure was a result of low potassium, so they gave me an IV of potassium and sent me on my way.

I always take potassium.  I take ungodly amounts of potassium.  I eat foods with potassium but it's never enough.  As most of you know, I have high intracranial pressure without treatment.  This means that my body makes too much cerebral spinal fluid and it squeezes my brain when my pressure is really high.  To keep this down, I take a drug called diamox.  It does a really great job of keeping my pressure normal, yet it depletes my potassium.  I can usually take enough supplements to stay on the low side of normal, but after my ER visit, my neurologist and I decided to take a "quick" break from the diamox to catch up on potassium.

After my visit I upped the potassium even more.  More and more potassium.

To stop diamox is risky because it means my pressure will rise.  If it rises too high, it's likely that I will stroke.  But to have low potassium is also risky because your heart is working overtime and then some.

So our plan was to stop the diamox for a bit, catch up on potassium and begin the diamox again.

After two weeks, I did more blood work to see where I was at.  I figured by then (and considering how much potassium I had been taking) I'd be on the high side of normal.  Nope.  Just barely in range.  But it took a week and a half for me to get my results with the increased dose, so I began the diamox again.

Day two- my heart rate jumped way up and my bloodpressure was also very high.  So I immediately pulled the diamox again.  But this was week 4 without diamox, so I was already beginning to get pressure headaches.  A sure sign I'm working my way toward danger.  I saw my neurologist on Friday and after looking at my eyes (my optic nerves looked far more swollen than they had been two weeks ago) so he sent me to the ER for a spinal tap to drain my pressure.  He wanted to bring me back to safety until we can figure out what to do.

I told my friend walking into the ER, I felt kind of silly walking in and asking for a spinal tap, but two hours later I was done with the procedure.

I have fought tooth and nail against a shunt.  First of all, it's brain surgery.  Second, having an immune deficiency and challenging your immune system with a major surgery is not ideal, yet that might be where we are at.  Third, have multiple infections and having brain surgery just really doesn't sound appealing to me.  :-)

The current plan is to look for two things: 1) is there a reason my body is no longer absorbing potassium 2) is there something that is causing my body to use more potassium than normal.  If neither one of those things are causing me not to be able to keep up on potassium, then it will be time to give in and have a shunt placed.

In the meantime, my pressure is now low, (because of the spinal tap and the leaking after the tap) I'm hoping we can buy enough time that if a shunt is necessary we can wait until winter break but ideally summer break.

Saturday, August 19, 2017

Pain relief?

I don't normally recommend products.  If I have learned anything in not being well, I have learned that what works for one person doesn't work for another.

This may be a bit repetitive from my last post but quickly I'm going to list a few of my diagnosis.  Lyme, bartonella, babesia, rocky mountain spotted fever, typhus fever (all tick borne infections), hypothyroid, High ICP, Hypogammaglobulemia, CIDP, Chronic Fatigue, etc.  You get the point.

I've had a rough summer.  My pain levels, especially nerve pain and inflammation, have been through the roof.  In fact, this week was week two at work this year, and by Tuesday night I was in so much physical pain I couldn't sleep.  On Wednesday, by lunch time, I was wondering if it was realistic for me to continue working.

A friend of mine just started selling theramu.  "Theramu products were developed as a safe all-natural alternative to relieve pain and inflammation anywhere on the human body through a proprietary compound of Emu Oil and Pure Hemp Extract."  She had told me on Monday she had samples.  I called her Wednesday at lunch time and she bought me some samples right away.  When I got home I rubbed the Relieve Pro with Menthol sample on my body.  Within minutes my body was worlds better.  I slept that night.  And I made my first purchase the very next day.

The nerve pain in my body is sometimes unbearable and this cream made it so much better within minutes.  On Friday, I came home with a bad headache.  I rubbed some of the sample on my forehead.  Again within minutes my headache was better.  It didn't cure my headache but it took my pain level from a 10+ to about a 3.

The product is made of Menthol 5%, Pure Hemp Extract .85%, Emu Oil, Bee's Wax, and Proprietary Blend of Essential Oils.  Don't get me wrong, I am not claiming this product cures Lyme or any of my other diagnosis, what I am saying is that it relieved many of my symptoms. It made me go from, questioning my ability to work to believing I will make it through my busy year with little to no pain at all.  It does not contain THC for any of those that are wondering, so it's completely legal.  

Like I said, there aren't many things I endorse.  Especially to those that have similar situations as I do, but it alleviated my pain in a huge way. I am in no way claiming it is a cure, but I am saying it was hugely helpful in my ability to make it through the day and to sleep at night.   If you are interested in ordering, please consider ordering from my friend's website as she is just beginning her business.  Again, I wouldn't recommend this, if it hadn't been such a huge help for me.  

Her site is linked about but the address is theramu.com/cammypebsworth




I'm not who I was.



I have many diagnosis.  And honestly, I am way more sick than I let people know.  People would probably think I was crazy if I shared my story with them.  Truly.  I mean as if lyme disease and co-infections are not enough, let's add in high intracranial pressure.  For those of you don't know what that is: high ICP means that my body makes too much spinal fluid.  Because I make extra Cerebral Spinal Fluid (CSF), the fluid squeezes my brain which creates unbearable headaches.  To control this I take a drug called Diamox.  The Diamox depletes my potassium which makes your heart rate sky high, so I am constantly in a battle with my body to keep up on my potassium.  On top of that last year I was diagnosed with hypogammaglobulemia which is an immune deficiency.  That means my body doesn't make enough antibodies to fight infection.  Recently, I was also diagnosed with CIDP which is a cousin to MS, I'm told.  CIDP is an autoimmune disease that causes the demyelination of nerves in your limbs.  Some people with CIDP lose their ability to walk.  I'm the one that when you go to the ER, they pull you back immediately because you have too much seriousness that could go wrong fast.  Let's not forget I have survived meningitis, sepsis twice, encephalopathy, and I could go on and on.  You get the picture.  I'm not well.

Having said all of that, I am pretty functional.  Mostly I attribute that to God, my family, and friends.  I have a great support system.  But it gets lonely.  Very lonely.

Most of my good friends and family have endured this journey with me for many years.  I appreciate them so much because without them, I honestly don't know where I'd be without them.  But even though they have been amazing, they don't get it.  Not really.  And how could they?  If you don't live inside this body, you really don't know.

Even Pat, my lover, my best friend-doesn't really get it.  He probably does as well as any healthy person could though.  He tries.  They all try.

I'm not who I was.  I'm not who I used to be. I was vibrant, happy, outgoing, confident, smart, creative, energetic, and loving.  I was the one that was always smiling.  I never doubted myself.  I was independent.  Sometimes too independent.

We have been in this community a little over a year, and I rarely tell anyone about my health.  Why?  Because it's a lot to take in.  And if one doesn't think you are crazy, then one often has an immediate sense of "feeling sorry for me".  I don't want that.  I don't like it when people feel sorry for me because at the end of the day, we all have something.  Some struggle in life.  Something that makes ones own life difficult.  Mine isn't bigger than yours, it's just different.

But what gets isolating is when you are tired of telling your hubby or your friends bad news, or how you feel, so you quit talking about it.  Or you condense it when you do discuss it, because even you are tired of talking about it.  Tired of thinking about it.

It's also very isolating when you start to make new friends at work or in your community, and you get invited to go somewhere or do something.  Reality sets in.  My life outside work doesn't look like a normal person.  I begin the day with no less than 30 pills, ranging from antibiotics to potassium to diamox.  I go to work.  Give 110% because that's who I am.  Come home.  And crash.  Take more pills, etc.  My weekends consist of infusions with 5 needles inserted into my belly over three hours and recovery not just recovery from the IG but recovery from my week because I am not well.  Yes, my weekends and my evenings are to recover.  So that I can begin again.  And do my best.  So when someone new that I really like asks me to do something, then often I have to pass because it's not realistic for me to hike a mountain or go to a concert, to stay up late, to get up early, and then it's lonely.  And when it is realistic for me to have some extra "life" in me, I try to spend it with my cute hubby or good friends, because so often they don't get the best of me.  But it is all very isolating.

I am functional though.  Mostly.  There was a time I thought I was well, but if I'm real honest with myself-I'm not.  Well people don't need weekends to let their bodies recover.

I've worked very hard to get my life back and to teach again. I love teaching.  With every part of me.  Not a day goes by, that I am not thankful for the opportunity I have to work with kids.

When I think back to that girl so long ago that was well and happy, I sometimes miss her.  I do miss her, but I'm not sorry that I'm not that girl anymore.  Don't get me wrong, there are still days I grieve not being well, and there are days when I feel very lonely and alone, but I love that this chronic illness journey has made me who I am today.  I'm content.  I'm still happy.  I still love life, but I have a greater appreciation for the world around me.  For what friendships mean.  For how lucky I am to be able to work.  For how blessed I am to have the awesome friends and family that I do have.  I miss that carefree girl but without her I could have never learned to appreciate the world being chronically ill.  I'm thankful for her.  Even though I'm not who I was, I'm still every bit of who I need to be.  I'm me.  I'm the best version of me.



Monday, July 31, 2017

SCIG begins!

Hi Everyone,

I just wanted to post a quick update.  Last Tuesday I had my first subcutaneous Immunoglobulin therapy infusion (SCIG).  The infusion went fine.  The insurance approved one infusion a week for six months.  Tomorrow will be my second infusion.  I am hoping after tomorrow to be able to do them from home.  The infusion itself takes about two hours.  I've had a lot of people ask me what it's like to do this therapy.  You can watch the short video below to see how this works if you'd like.  Essentially,  I am putting 5 little needles in my body fat, the needles are connected to tubing which is connected to a syringe that is placed into a pump to push the IG in at the right rate.  When it is finished, I pull the needles, and put a little band-aid on where the needle was.  Sometimes you can get little welts but eventually they go away.



So what is the stuff that's going into my body?
It's immunoglobulin otherwise known as IG.  IG is the part of blood plasma that contains antibodies.  I am getting lots of other people's antibodies pushed into my body for two reasons, 1) to address my immune deficiency problem and 2) to address the CIDP.  

School starts one week from tomorrow.  I've been feeling pretty crummy most of the summer.  I would appreciate all my prayer warriors to pray that I am well enough to return to work next week. That is my hope.  I've been thinking all summer about things we can do this school year to make gains.  I'd really love to be in a much better place come next week.

Thanks everyone for stopping by and reading.   



Monday, July 17, 2017

A health update

When you are as complicated as I am, how do you catch everyone up when I haven't written in so very long?

I'll do my best.

Last summer when we arrived to Alaska I wasn't doing very well.  I don't know if it was the stress of the move, life in general, a new bug, a new diagnosis, who knows. 

We did some testing.  I had a new diagnosis.  Hypogammaglobulinemia.  Basically a dysfuctional immune system.  Hypogammaglobulinemia means that I don't fight infection well, that my body doesn't make the antibodies it needs to fight foreign invaders.  Given my history, it wasn't really a surprise, right?  I mean no one can really be shocked by that.  Lol.  

My intracranial pressure was also elevated which was not good, and my brain stem was kinked.  I'm guessing the kinked brainstem was a result of the high pressure.  Not enough for it to be considered Chiari Malformation which was good news.  

So-last summer, we worked on getting my pressure back down, building my immune system, and continuing to treat tick borne infections.  

For those that are new readers, I got really sick in 2010-2011.  And by 2012, I had a encephalitis (a brain infection probably due to many years of untreated tick borne infections).  I had gone from being a successful teacher and having finished graduate school to my neurologist labeling me as cognitively impaired.  There was a time I couldn't make complete sentences when I was speaking, my processing was incredibly slow, I could no longer drive, I got lost in stores if I was alone, I was not well.  Not well at all.  And after many years of treatment, I have my about 90% of my cognitive ability back, and I am mostly functional.  <3  

As I began the school year I was doing pretty well.  Sure, sometimes, I'd come home and be in bed by 7, but the fact that I was teaching again felt amazing.  Truly.  When I had to step away so long ago, I really grieved not being able to teach.  It's difficult when you feel like that's your calling and it gets taken away.  Everyday, I'm thankful to have been able to return to education.  

I did pretty well until November.  I got a kidney stone that was too big to pass, and so the doctor wanted to operate.  Because my immune system is challenged it was incredibly difficult to bounce back like a normal person, in fact I ended up getting a few Myer's cocktails (a Myer's cocktail is an IV of high does vitamin C, vitamin B, magnesium, and calcium) so that I could get back on my feet.  After two IVs and a little extra down time, I made it back to work.  Yay Me! 

Then I did really well until spring break.  On spring break, I don't know what happened, and I'm still not sure but I couldn't function.  I couldn't get out of bed for the most part.  I had a bad headache, my blood pressure was sky high (and it's usually low), I was nauseated, throwing up, dizzy, etc.  Great way to spend spring break, eh?  

This led me to visit my neurologist.  As most of you that know me and my journey, you could probably guess that a new MRI/MRV, Spinal tap, and eye work up, and tons of bloodwork was on order quickly after that.

Those results prompted further testing.  I had to do a Nerve Conduction Study and an EMG.  

My pressure was 23, which is high for a normal person but pretty good for me.  Yay me!  But my spinal tap and blood work was yucky as was the NCS/EMG results.  Hence, a lovely new diagnosis. (Enter sarcasm here) I now have CIDP.  

"(CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease." NIH

This means that I will be beginning a new therapy.  I could either do IVIG.  This means about an 8 hour infusion of Immunoglobulin once a month with a recovery time of a couple of days, or SubQIG which is essentially a smaller does administered subcutaneously once a week with fewer side effects and less recovery time. The first three weeks have to be given in an infusion center and then I can do it from home.  I'm hoping with all my "nursing" background I can do this at home before week three.  We are just waiting on the infusion center to get the authorization number from the insurance. 

I visited my LLMD in June.  We are still treating tick borne infections.  Right now we are working on Babesia and Lyme.   

I wondered if the CIDP could be lyme, but in hindsight it doesn't really matter if one caused the other, the fact is it has to be addressed.  

So this summer, I have been not been super well.  I have had lots of neuropathy in my limbs, lots of numbness, and I have napped a great deal of my summer away.  I've also been off balance a lot, but I've only fallen once.  Yay me!  

Overall, I'm anxious to start this new therapy.  I'm hopeful to start feeling better before school starts.  I'm not ready to give up my passion; I'm just not.  If I have to, I will, but I'm not there yet.  We will see what happens in the near future I guess.

Meanwhile, I'm taking classes for a new endorsement on my certification.  Yay me.  I am enjoying Pat when he is home.  I am taking lots of naps when he's away.  I am enjoying friends when I feel well enough to do so.  I am loving my LIBBY, even though she's crazy!  
Overall, life is good.  I'm blessed to have such great people in my life.  Family, friends and especially Pat.  I'm thankful to God for everyone and everything he has given me.

Being chronically ill can be a bummer sometimes, but one thing I've learned is you can't let it define you.  I am not my illness.  I am happily me.  Even on my bad days, I still have so much to be thankful for.  Hopefully next time won't be so long.  

Love you all.  Thanks for checking in.  


A lot has changed in a year.

Last time I wrote, we were in the year of transitions. Pat retired from the Coast Guard.  I had been working.  We were getting ready to relocate from Sacramento to Wasilla, Alaska. 

Pat retired April 1st, it was a beautiful ceremony.  I was quite proud of him.  His speech was perfect and for the first time at a ceremony I felt like it was a celebration, not some formal affair.  Maybe because it was Pat's retirement?  After the official ceremony we partied hard at the American Legion.

Then with just a little recovery time, we traveled to Kentucky to visit our son's family.  After a week or so there, we moved on to visit our parents in Indiana.  Then we headed back to Alaska.  Obviously we took the long way. 

When we arrived here, I was pretty sick.  I don't know if it was the stress of the move, or the current protocol I was on, but I was not well.  At all.  It took me most of the summer and doctors appointments to recover.  My pressure was elevated again.  My MRI showed that my brain stem was kinked (probably due to pressure).  But I was not about to give up!

I applied for jobs.  I ended up getting hired here locally.  I am not in my own classroom, but I have a great job working with kids and teachers that I love.  It is physically easier on me, but every bit as busy as it was in the classroom.  Just a different kind of busy. I miss having my very own students.  I share them with their classroom teachers. But, over the course of a year, I have become more and more passionate about my job and my group of students.  I can share more on my work in another post.

In December, I lost the furry love of my life.  Kiah.  My sweet and loving Kiahmonster.  I feel like she was my furry soulmate.  We had been through a great deal together and she just "got me."  She understood what I had been through, more than most humans, I believe.  She made me smile, she made me fight, she made me happy.  When I think of her, my favorite saying is, "Forever wouldn't have been long enough."  And truly, it wouldn't have been.  I still mourn her passing daily.

Also, in December a new little fur-ball was born.  One that became ours at the end of February.  Libby.  Libby goes by...Libby bear, Libby Lou, and Libs.  She is full of love and affection along with a bit of craze.  What's funny about Libby is she does not like anything in my hair, at all.  If I have my hair in a pony tail and she notices- she hops up on me until she can reach my head.  She'll pull and pull until the hair tie is out and then drop it, then she gets down, and goes on her way.  I feel like she tries to rescue me from them.  Libby has been a nice addition to our family for sure. She brings many smiles to our face and we love her greatly.

Matthew came and lived with us for 4 months while he was attending a welding school.  He finished school and moved back down South.  It was a blessing having him in the house for a while.  I miss his presence.

When we first arrived we lived in a furnished duplex we rented from friends.  In September we went under contract to purchase our home.  We closed on it the end of February.  By the time our stuff arrived from California, it had been, literally--- one week shy of a full year before either of us had seen or touched any of our stuff.  Crazy, huh?  It was almost like Christmas.

Pat is working in the summer, guiding on the Matanuska Glacier.  He guides: hikes, treks, and ice climbs.  This is second summer.  I think he really enjoys it, but I think he loves being free to do as he pleases during the school year.  He is a huge help to me and sometimes, I'm not very good at showing my gratitude.  So if you read this, Pat, thank you.  You are the best.

It's nice to be in a home, have a job, and be settled.  I love living here in Wasilla.  I love that we have great friends here.  I love that moose frequent our backyard and that Libby has an acre and a half to play on.  I love my job.  It's a great place to be.  Truly.

I didn't want to make this too long so my next post will be a health update.


Monday, February 29, 2016

New Beginnings

Hi Everyone,

I guess with wellness, you get too busy to keep up on your blog.  Lots has happened in the last few months. 

I began work in November.  I wanted to begin earlier, but there was a delay in my re-certification processing. I am subbing.  I wanted to begin with subbing to see if it was realistic to be back in the classroom next year and believe me, I am sure it is.  I'm so excited.  I have waited for this for so long.  When I first got sick, I didn't know if it'd ever be possible, but with God all things are possible.  It's been a very long road but I am happy to report, I am doing wonderful.  I am more than grateful.

Pat is retiring from the U.S. Coast Guard soon.  We have decided to make Alaska our home as we both have loved it since our first tour up there in 1997.  We will settle in the Mat-Su Valley in May.  He and I are going to rent a furnished apartment from some of our friends in Wasilla until we are settled and can pinpoint specifically what area we'd like to be in. We are both super thankful for our friends allowing us to rent from them temporarily.  It'll make this transition much easier. 

I am applying to schools now and am hopeful to be back in the classroom full time next fall.  I am considering taking some classes this summer to further my education. 

Pat is researching schools and jobs as well.  I'm hopeful he will have exciting news to share in the near future, but for now, he has a lot of researching to do.  I am thrilled about this new chapter for him as he will get to pursue his life's passion.  I know from teaching what it's like to do what you love and love what you do.  Don't get me wrong the CG has been good to us, but it's not his dream.  Not his love.  He has amazing times ahead of him, I am sure. 

Thank you for your support.  

Until next time, 
Ginny


Thursday, October 29, 2015

For you, Pat

When we were kids, we were married.  Barely out of school. We began our life together so young.  I remember our first date at the Christmas Dance in high school.  We danced to George Straight's "I Cross My Heart" and I remember feeling connected to you even though it was only our first date.  Feeling safe.  Feeling special.

We began our lives together with Matthew,  something most young teen age guys don't want or care to do.  But not you.  You loved him.  You cared for him.  You were patient that our teenage beginnings consisted of loving a child and making him our first priority.

After our marriage we moved to Michigan which was a great experience.  I loved our hockey game nights. ;-) Something magical about our house in Charlevoix.  Perhaps that we were doing it-living together, being married, beginning.  Perhaps that we were young and in love, perhaps that we were healthy.  I'm not sure, but it was simply perfect.  Even having to save, save, save-soda cans to afford a pizza out once a month.  It was perfect.

Then you went to A-school.  I moved back home.  It was hard being apart, but we didn't have a choice so we did it. Right before we got our new orders and you came home, I was hospitalized with meningitis.  I was sick.  So sick.  I remember feeling like I was dying.  When we said our vows only a year before, I didn't think "in sickness and health" would come so soon. But it did.  I sort of recovered.  I got better from the actual meningitis, but from that day forward, I had headaches. Other symptoms. After that my health deteriorated over the years. Slowly but surely.

We moved to Alaska.  What a grand adventure.  It took me a while but I grew to love it, like no place I had ever lived.  It was so pristine.  Beautiful.  The land.  The people.  The community.  It was by far beyond compare.

We made another move to California so that I could follow my dream to become a teacher.  (Thank you for that by the way.  I could never have done that without your support.)  Which in itself presented challenges.  Challenges of me not being "well" and trying to balance married life and school.  I know I didn't do so well at that but I am forever grateful you were patient and allowed me to follow my passion.

Before we knew it we were back in Alaska, I was finishing up my Master's and certification.  Working. Not long after that I was teaching.  We did have some major challenges during this time, but we did it.  We made it.

As time pressed on I continued to get worse health wise.  I tried to keep up.  I tried to not let what ever it was that was making me sick keep me down.  But eventually, I was down for the count.  It was nothing short of a miracle that we were moving to California.  I'm sure looking back on our move, having access to so many specialists, saved my life, without a doubt.

I'll never forget when finding out what was "probably" wrong with me in Kodiak...going to the airstation, meeting you in your truck.  Telling you all about what we were about to face.  The fact that there might not be a cure, the fact that insurance typically doesn't pay for treatment, that there are only a few doctors in the country even willing to treat me.  All of that flew out of my mouth as tears were falling, and you looked at me as sincere as possible and said, "I just want you well."  You told me we'd figure it out.  Thank you for that.  Thank you for being on my side even when it sounded so scary.

I want to apologize to you for all the times my illness made your life so difficult.  I'm sorry that you were told I could stroke out and die at any minute because the pressure in my brain was off the charts. I'm sorry that we had 12 hour doctor days driving all over the state finding the best specialists to help me.  I'm sorry we sat in traffic for hours and hours and I was too sick to be good company.  I'm sorry we had countless spinal taps where you had to take me, comfort me, care for me and get me home so that you could go to work to provide for us.   I'm sorry that we had ER visits and admissions after you had worked all day.  I'm sorry that I probably scared you to death when I said things that weren't coherent, that didn't make sense, when I'd get lost in a store without holding on to you or Matthew.  I'm sorry for how this illness has been so hard on you.  I know it has. I don't always say so because it's tough to reminisce about such awful times, but I know it was horrendous and for that I am truly sorry.

I know you felt intense pressure to provide for me.  To get me well.  Medical bills were coming in.  Thousands of dollars here.  Thousands of dollars there.  And well, I can't imagine how hard that was on you.  At the time, I was too sick to understand the depth of that stress.  I still may not even understand it fully.  But you have always had a strong need to provide for me, for Matthew, for us and not seeing any end in sight of the costs probably took your breath away.  Thank you for sacrificing so many things so that I could get well.  I'm sure it wasn't easy selling your dream truck and getting an old Subaru to help financially for medical treatment, or to spend huge amounts of what we had saved. And for all the other "little" sacrifices financially that I cannot even begin to list. Thank you.  Without those sacrifices, I know I would not be here today.  You are the best provider I could ever ask for.  From the bottom of my heart, thank you.

It took me a great deal of time, to realize how hard this illness has been on you to watch me suffer. I think because I live in my body, I know what a good day feels like, it was probably easier for me than for you.  On a good day, I could feel little changes in my body. On a good day, I had hope.  On a good day, I felt encouragement.  But you, you didn't know. You couldn't know.  Not unless I told you and even then you still could only see what I looked like on the outside.  Back then my good days still didn't consist of much.  A shower maybe.  A movie.  A drive.  A "good day" must've been almost as scary as a bad day. Watching me suffer and endure was probably more difficult on you than on me.  I acknowledge that.

You want me to be well, and I want you to be able to follow your dreams.  Have a healthy wife so that you can take some time for you.  It has been hard to watch you put your life on hold to take care of me but in all honesty I am beyond grateful because there were times when I couldn't have cared for myself but you did.  You cared for me.  You gave me exactly what I needed.  You are an excellent caregiver, even though there is so much more to you than that.  I am hopeful that soon, you will begin to take time for you.  I am almost there and you, you deserve some time for you.

I think about what your life would be life without me.  It was hard for me throughout this illness to consider this idea, but I did often.  Because being my husband, was so hard.  Your life would've been so much easier.  You would've had more time to do the things you are passionate about.  You would've had more money to explore the adventures you'd most like to travel.  You would have so much less stress.  Yes, your life without me would've been easier.  But I acknowledge that you took the long, hard, difficult, road and you loved me through it.

Selfless is the word that comes to my mind when I think of my illness and you.  Some people may say that you can be selfish on occasion (but I guess we all can), but in this illness, in this walk, you have been the most selfless person I know.  You have given.  You have provided.  You have cared.  You have loved.  You.  Yes.  You. Have. Been. Nothing. But. Selfless.

For four years,  I have battled.  Fought.  Struggled.  I have been at war with all these things living inside my body.  Trying to reclaim what is mine.  Who I am.  But you, you are the real hero in this war.  You have fought, sacrificed, provided, loved.  You have been behind the scenes doing the most difficult job in this war.  You are so much stronger than you think you are.

Seeing me through this has shown me what an amazing man you truly are.  I wish I were more like you.  I don't know that I could have been successful if the roles had been reversed.  You are not only my best friend, my soul-mate, my lover, my husband. You are not only a great husband you are an excellent human being.  I wish there were more people like you in this world.

As I am getting well and applying for work, thank you for reminding me every time we talk about it that my health is more important than work.  You know me.  You know I would love to dive in head first, so your constant, loving, supportive reminders that my health comes before my career helps me remember that my most vital job is taking care of me.  Thank you for always pushing me to take care of me.

I know I don't say it often enough, but thank you for each and every single thing you have done for me.   Thank you for every sacrifice you have made for me.  Thank you for being you.  I'm not sure you know what a great husband you are.  It is not easy being married to a chronically ill person, especially me.  ;-) But you, you handled it with compassion, love, dedication, and strength.  I admire the way you have handled the last four years.  You really are amazing.  Amazing in every since of the word.  I can't imagine traveling this journey with anyone but you.  I could not have.  I know that.  I would not be here if it weren't for you.  You've taught me what it is to love.  You've taught me what it is to fight.  You've taught me what it is to never give up.  I am healthier because of you.  I am getting well because of you.  I am stronger because of you.  I am me because of you.

Thank you for being my everything.





Tuesday, August 11, 2015

My Fight Song





Months ago, I was on the phone with a very dear friend of mine, and she asked me if I had heard Rachel Platten's Fight Song.  I hadn't heard it, and I can't remember if I listened to it for the first time, when we were on the phone or when I hung up.  She told me this is your fight song.  She said, " Every time I listen to it, I think of you."

I liked it but it wasn't quite time for it to be "MY" song at that point.  Recently, it became my "Fight Song."  I let my husband listen to it and told him what my friend had said and he told me he could see why it reminded her of me.  That solidified it even more.  I have adopted this song on my journey to wellness.

Below are the lyrics with commentary...


Like a small boat on the ocean
Sending big waves into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

(This reminds me of home.  Where I'm grounded.  Near the ocean.  And how even though the ocean is so powerful, I am powerful too because I can make some big waves. Those of you that know me, know I love words and what they mean.  I love that she says, "Like how a single word, Can make a heart open," because that is so true.  Words when used correctly can be anything you want them to be or need them to be. Making an explosion with one match means to me, that I get one try, and I am going to succeed. Much like this journey.  I've only have one life, and I will get it back.)

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

(I am pretty reserved and generally pride myself in choosing words wisely.  Even if that means holding a lot in.  A therapist once told me, "you gotta get that out."  It can bounce inside my head all day long, but chances are I'm going to play it safe and keep my thoughts wrecking through my brain...except for when it comes to this fight...this moment. right here. right now.)

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me
(Most of this is self explanatory.  I am going to take back my life.  I will prove that I am alright.  I do have power.  Through God, I can do ANYTHING!  And- the part that reads, I don't really care if no one else believes, well, that's for those that have given up on me.  I get it, it's been a long journey.  It's hard to be friends with a sick person, but I do have a lot of fight left and I will succeed. That's a promise.)

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep
And it's been two years
I miss my home
But there's a fire burning in my bones
And I still believe
Yeah I still believe

(I have lost friends over being sick.  Many have fallen away.  I understand.  No grudges.  It is hard to be sick.  It's also hard to be a friend when you are sick.  It's also hard for friends to see you sick.  Many of my friends though, have remained loyal, good friends- and for that I am thankful.  For me, in my fight song, it's been four years and when Rachel sings about missing her home, I consider my "home" my old self.  The Ginny I used to be.  But there is definitely a fire in my bones that let's me know I'm still in there somewhere.  And yes, I always believe. Believe is one of my most favorite words.)

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time
( I've already said what it means to me.)  

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me
A lot of fight left in me

(Already talked about this too. ;-))

Like a small boat on the ocean
Sending big waves into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

(And this.)

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me
Now I've still got a lot of fight left in me

(And this.)

Isn't this the perfect song for me fighting lyme disease and other chronic infections?
I think yes, yes it is.  

For those of you that haven't heard it and would like to, please click the link below.  




Monday, July 20, 2015

4 Years In

4 years ago, I started treatment.  Doesn't seem real.  In some ways it seems like forever ago and in other ways it seems like just yesterday.

In four years, I have struggled.  I have cried.  I have lost.  I have been disappointed. I have known fear.  I have known Faith.  I have been thankful.  I have been a fighter.  I have accomplished.  I have conquered.

I think I have been on IV treatment for 2 of those years, though not consecutively.  I have had cocktails of many drugs.  I've taking countless oral meds, supplements, herbs, etc.  I think I've had a total of 4 picc lines and 2 chest lines.

I've gone from having a Master's Degree in Education, to being labled as cognitively impaired, and back to 90% of my cognitive function before getting sick.

I've gone from non-stop tingling in all of my limbs.  Now, it's rare.  A little more common when treating bart, but mostly gone.

I've had scares like when I was told I shouldn't be alive.  Or when I was told I needed a high risk brain surgery to put stents in the veins of my brain.  Yet, I've had some pretty sweet successes...Like when my non-stop fever for over a year finally broke for the first time.  I still get fevers but not a constant daily fever as before.  Another success was getting my intracranial pressure back into the normal range. Another success was going from awful, non-functioning, stop your world kind of headaches daily to a few a  month.  My processing time is almost back to normal.  My speech is rarely delayed.

In four years, I have come a very long way.  I keep saying it but I do mean it...I am extremely close to wellness.  Extremely.




Thursday, July 2, 2015

New Protocol...

On June 29th, I had a visit with my favorite neuro-opthamologist.  I have so many great docs on my team.  I really am blessed.

(Short recap...Last blog- we had decided to do 6 weeks of bartonella treatment.  This involved Rifampin, Levaquin, and Doxycycline. The doxy can increase intracranial pressure so my nuero-opth and my LLMD said we could try it for 6 weeks, do some tests and see where we were at.)

June 29th made 6 weeks... I was sitting at the neuro-opthamologist's office.  I love his office.  It has so many cool pieces of equipment.  I'm always tempted to touch things and play with them when I am left unattended in the room but mostly I try to refrain.  Anyway, as I was sitting there, I was a bit nervous to see what the doxy had done in 6 weeks.  Was it something we could continue or was it going to be marked off the list permanently.  (Doxy is a really good drug for lyme and many co-infections, taking it off the table is ok but keeping it on the table is much better.)

The medical assistant took me to do some testing and photos.  Afterwards, I saw the doc.  He said that my pressure had increased roughly 10% in 6 weeks.  Then he followed by saying no more doxy.  EVER!  He even listed it as an "allergy" on my online medical profile so that other docs would stay away from it.  I was disappointed but atleast now we know.

Two days later, I had an appointment with my LLMD.  She and I decided to take a 2 month break from all antibiotics unless I had symptoms reoccur.  This was so exciting.  I have been on antibiotics since 2011, minus one or two- 2 week breaks.  I felt like I was on top of the world.  Yahoo!

Three and a half weeks in, I began getting symptoms.  At first I tried to reason them away.  Well, my feet could hurt because I did more today than normal.  Well, I'm a little anxious because I have a lot going on.  Well, I have a headache because my body is recovering from Doxy and an intracranial pressure increase...yada, yada, yada, but then I got my friendly fever.  I call it friendly because it's almost always there with me when I am not well but it generally doesn't get too high.  Once the fever came, I knew it was time.  I needed to hop back on meds.

I made it four weeks with no antibiotics.  Then I started Rifampin, Levaquin, and Bactrim DS.  I've been on this protocol for 3 weeks now and I'm doing pretty well.  A little herxing now and then but not too bad.  What was interesting, was the Bactrim stirred up some babesia die off, I think.  I had a wave of vivid babesia symptoms...so babs treatment will be in the future.

I am going to continue on the bartonella protocol for a while.  I see my LLMD in September.  At which time, I think (I'm hoping she will too) that we need to address Babesia.  Overall, I'm doing pretty well though.  Good days and bad days, but even my worst days are no where near where they were 4 years ago.


Sunday, May 24, 2015

Babesia and treatment update

I was able to finish a round of Bartonella treatment.  I took 2 weeks off of treatment as per my LLMD's request.  That was awesome.  I am at the point now where I feel better off of treatment than on.  I feel like that's a nice transition.  I used to feel better on meds even with the herx reactions.  Just a little reminder to myslef at how far I've come.  Go me.  Yep, I just said that.  :-)

I was also instructed to do a babesia challenge.  Babesia is a malaria like parasite that affects red blood cells.  Symptoms include night sweats, fever, chills, air hunger-feeling like you can't catch your breath will sitting still even, vivid dreams-usually night terrors, and an overall feeling of "I can't handle this".

We treated Babesia early on, and for me, babesia has always been in the back ground.  It's never really had center stage like lyme, bart, and rickettsia have.  Just sort of there, mild, lingering.  So because we treated it, and symptoms of one infection can sometimes blend with other infections, it's been hard to say if we are finished with Babesia or not.  Some people who have babesia are really, really sick, and though I've been really, really sick; I haven't been babesia really, really sick.

Anyway, so we did this challenge.  Arteminisin is an herb known to address babesia, so I took arteminisin for a week.  The idea is that if I had a worsening of babesia symptoms, we need to treat babesia in the future.   Immediately, I felt like I couldn't breathe.  I was constantly feeling that way.  I was also more fatigued than I had been, especially off the meds.  Other symptoms seemed mild and some were even non-existent.

This means that we are not finished treating babesia.  And truly, it's good to know.  Sometimes, multiple infections are so thick they all blend together.  Other times, one is more prevalent than others.  When this happens I like to say it has center stage.  Babesia is lying in the background.  Bartonella still has center stage for me.

Our plan now, is to treat for 6 weeks for Bart.  We are doing a round of Doxy, Rifampin, and Levaquin.  Rifampin is a great drug for bart.  One of the best.  I had to have special permission to take doxy.  Doxy can increase intracranial pressure and because that is always an issue for me, we have to monitor closely, but my neuro/neuro-opthamologist said we could try it as long as we kept a close eye on what was happening brain-wise.  Doxy is a great drug for lyme and for bart.  Levaquin is also a pretty big gun for bart especially combined with the other two.

I was supposed to start meds today, but gave myself permission to take today (and possibly tomorrow off also) to rebalance myself after taking the arteminisin.  Once I feel more "normal" I will begin again.

I feel like I'm pretty brave, but this bart regimine has me a little scared.  It makes me crazy.  See my previous post.  It was soley dedicated to bart.  Pat says if I get too crazy he's putting me on a plane to my parents or to Alaska.  Which I'd love to do either, but not when I'm a hot mess.  So prayer warriors, feel free to keep me on your list.

In the meantime, everyone always asks, "how are you, really?"  And- I think I am super close to wellness.  I think lyme is under control.  I think I still have to work on bart and babesia, but when I'm not doing treatment, I feel a lot like me.  I have more energy.  I daydream about teaching again.  I think I'm super close.  Super, super close to wellness.

Friday, May 1, 2015

Bart is a bitch!

Bartonella.  Otherwise known as bart. Sometimes known as Cat Scratch Disease/Fever.  Is. A. Bitch.

Below are a couple of pictures of a Bartonella rash.  Most of the time they look like stretch marks, yet have sort of a shooting star appearance on one end.  Sometimes, they are more faint, but they almost always look like stretch marks but generally are positioned in a place one shouldn't have stretch marks.



When you have lyme and other co-infections, sometimes all of the bacteria and symptoms blend together.  While other times, one infection likes to take "the stage." Right now, for me, Bart is front and center and roaring loudly.  

Symptoms of bart are ugly.  Not that the other infections are a piece of cake, but for me Bart is truly for lack of a better word- a BITCH.  

So what does bart feel like:  it feels like sore soles, especially in the mornings.  It feels like intermittent fevers.  It feels like fatigue.  It feels like intense body pain.  It feels like dry eyes, irritated eyes, aggravated eyes, tired eyes, angry eyes.  It feels like pins and needles in all of your limbs- a constant state of neuropathy.  It feels like swollen glands and lymph nodes.  And all of that, I can deal with.  That's not that part that bothers me.  That. I. Can. Handle.  

The part of bart that is a complete bitch, the part that I can't handle are psychiatric symptoms.  That's the nasty part of this disease.  Bart has the ability to cause depression, a bipolar personality, severe anxiety, anger, rage, panic attacks-lots of craziness in the mental category.  

For me, I am generally happy.  It takes a lot to make me angry.  Truly.  I'm patient. Kind.  I love people.  But when Bart has center stage-I'm not even me.  I'm angry at the world.  I get mad at stupid things.  And not just a little mad, the kind of mad that consumes your body (and the crazy part is-when this happens, I know it's irrational, I know it's not me), but I CANNOT pull myself out of it.  It's like someone has sucked out my personality and spirit and put some sort of evil inside me...It's scary. It's ugly.  

Unfortunately, Pat gets the brunt of this.  Bless his heart.  I was pretty ugly this week.  Not myself.  Not at all.  And when I do pull slightly out, I can apologize but it's tough.  It's tough on him.  It's tough on me afterwards that I was so hateful and hurtful.  

We are actively treating bart right now.  We had it under control until I got sepsis.  Then I started getting some of my bart rash back.  My soles started hurting.  And more and more symptoms returned. So-the last time I saw my LLMD, we began to treat.  And treating it has been hard.  It's like I'm in this huge limbo of good vs. evil.  Happy vs. angry.  Me vs. bart.  God vs the devil.  

I'm pretty sure the meds have ramped it up even more.  Because we are doing pretty aggressive oral treatment and whoa- look out, I am not me.  I know I'm in here somewhere, but I hope the last act is soon and I can become me again.  

I'm struggling.  I'm struggling for sure.  I'm sure it will pass.  But, it's tough.  Really, really tough.  



Tuesday, February 24, 2015

Parasites, Anyone? Why, Yes, Parasites!

*Warning* If you are easily grossed out, this blog post is NOT the post for you.

Parasites.  Did you know that a huge percentage of the population have parasites living inside them?  There are various studies giving specific percentages.  Most commonly, I have read that 80% of the population have parasites.  Sure there is the 50-75%, the 60-80%, the 75-90%, but most commonly 80%!  That is 8 out of ten people.  I might even venture to say, that I believe 100% of the population have parasites.

What are the symptoms of parasites?  They vary greatly.  But many lists contain these symptoms:
~Lowered immune system
~Rectal itching
~Fatigue
~Difficulty sleeping or waking up
~Bloating, gas, distended stomach, diarrhea
~Allergies
~Sensitivity to food or chemicals
~Sensitivity to smells
~Brain fog
~Joint pain
I could go on and on, but you get the point.

I had a friend say to me about a month ago, "Ginny, I bet you have parasites. Have you been tested?"  My response was yes, of course I had been tested.  I was negative too.  And-then my friend said, "I bet you have them anyway."  I thought about this.  I did some research and from what I read I learned that parasite testing is not accurate, nor reliable.  An A-ha moment!  I can relate to unrelaible testing.

My friend suggested I take Diatomaceous Earth to kill parasites.  What is it you ask?  Diatomaceous earth is a naturally occuring, soft, sillicious sedimentary rock that is easily crumbled into a fine white to off-white powder.  It consists of fossilized remains of diatoms, a type of hard-shelled algae. (Wikipedia)  
In order to ingest it, you need to buy food grade.  Do not conusme any diatomaceous earth that is not food grade quality.

I thought, what can it hurt?  In all the protocols I have tried over the years this was cheap.  So- I ordered some.  Again, what could it hurt?

I started taking it on a Friday.  Friday the 13th.  I mix one tablespoon with water in the morning and at night.  (If you consume this, you need to drink plenty of water throughout the day and take the DE away from food...)

So I started taking this on Friday.  And on Sunday.  I passed a liver fluke.  Parasite number one.  It was this thrill between being excited I have proff I'm killling stuff in my body that doesn't belong there vs. being incredibly grossed out.

*Insert Pause here* In the lyme world, many people do coffee enemas.  They are a great way to detox. Many of my friends have done them, and do them religiously, but I couldn't bring myself to try it for three years.  Then, I finally decided I'd give in.  I ordered my kit.  My kit arrived and it sat briefly in the house and cursed me everytime I walked by it.  I was not motivated at all to try it.  I would've...but I was working up to it.

But on THAT Sunday.  The Sunday that I passed the liver fluke...I was completely motivated.  I boiled my coffee got it all ready and did my first coffee enema.  (That is a whole story in and of itself.  Comical and painful all in one. Another day perhaps.)  Anyway, after the coffee enema, I passed LITERALLY HUNDREDS of parasites.  Not just a few.  Hundreds.  Hundreds.  When killing bacteria we just hope, our meds are working.  Ya know?  We don't have any proof.  When killing the parasites, they are there.  You can SEE them.  And again, it's this crazy feeling of excitement, you are killing these nasty things reaking havok on your body AND being incredibly grossed out that all those things are living inside you.  GROSS!!!!

Food for thought...Parasite eggs are on 75% of salad bars in the US.  If you have eaten at a salad bar, chances are you have parasites.  Also-parasites can live in your body for up to 30 years.  Some even say 50!!!  Parasite eggs are virtually everywhere.

The DE kills the parasites.  The silica from the DE acts like little shards of glass to the parasites and shreds them, meanwhile, it is fine enough that it is safe for our consumption.   The coffee enemas pull the remnants of the parasites out of your body at a much faster rate.  Remember I passed one, on my own.  Yet, when I did the coffee enema, hundreds came out.  

I've been doing this for 11 days now.  I am passing parasites on a daily basis.  On the days I do coffee, I get a lot more.  I am constantly grossed out and excited.  Everytime I think I don't have any more, then here they come in my next passing.  Crazy!

I have read that if I do this for 90 days without missing a dose then I will have killed all of my parasites.  This covers all life cycles apparently.  Anyway, then, after the 90 days, I will be on a preventative dose the rest of my life.

SO after I passed so many on that Sunday, I woke up on Monday and felt better than I have in months.

I don't give credit to me feeling better soley to the killing parasites work.   We had increased my IV vitamin C dosage, and I'm on oral meds for the lingering sepsis, but I was getting better.  Slowly.  Very slowly, but I was making progress.  I think the parasite killing just helped push me to the next level of wellness.  Gave me a little umph to my progress already.

I'm convinced now, that everyone should kill their parasites with DE.  I have some pretty incredible pictures of the parasites I passed but I'm somehow not feeling so great about posting them here.  I guess if you are dying to see them, you could email me privately.

I also had a friend that did this with me.  She passed parasites too.  Only ours were much different.  We have different parasites.  Crazy!


Monday, February 9, 2015

Update: Nov-Now...hospital stays, sepsis, sickness, patience, thanks

So much has happened.  I've sort of left everyone out of the loop.  I was doing so well.  I was doing remarkably well.  Then it happened.  I got sick, really sick.

Shortly after Thanksgiving I began to feel bad.  Just more fatigued than normal.  More headaches.  I felt out of breath sitting still.  Just little things.  I just kept plugging away at life, but then December 8, Pat came in from work around midnight and all at once I was REALLY SICK.  I was throwing up.  I couldn't get warm.  My heart rate was 150+.  I had a high fever.  (Anytime you have a line in your body, and you have a fever above 101.5*, you are supposed to go to the ER.)  Off we went.  We spent much of that night in the hospital.  The hospital did a sepsis work up.

("Sepsis is a life-threatening complication of infection.  It often occurs in people who are elderly or have weak immune systems.Sepsis happens when the body suffers from an infection and the chemicals released into the blood to fight the infection cause inflammation over the entire body. Severe cases of sepsis can lead to septic shock. Septic shock occurs when the inflammation causes tiny blood clots to form, blocking oxygen from vital organs and leading to organ failure and a life-threatening drop in blood pressure." ~http://www.healthline.com)

At the hospital, I received two bags of IV antibiotics and two huge bags of fluid.  I had many tests.  Blood work, blood cultures, urine cultures, etc.   After the antibiotics and fluid, my stats all came back to normal.  Finally around 10 am the next morning the hospital ER doc, gave me the choice to be admitted until they got results from the blood culture or to go home and work closely with my primary doc and he would call me if my blood cultures were positive.  I went home and slept that whole day.  That was a Tuesday and on Wednesday morning I had a follow up appointment with my primary care doc.  On the way to that appointment the ER doc told me I needed to return to the hospital right away.  My blood cultures were positive.  I did in fact have sepsis.  He said that I needed to be admitted.

They pulled my line.  Gave me IV antibiotics and let me rest.

After four days in the hospital, they let me go home with some oral antibiotics. I actually began to feel worse.  The problem was that my blood cultures revealed that I had two types of bacteria growing.  One-that was really rare and there were few to almost no medical journals about this bug and no established guidelines on how to treat it.  The second bacteria wasn't able to be identified.  The lab tried to grow both bacteria to see what drug they would be susceptible to, but with no luck we were left guessing...pretty much.  My LLMD, the hospitalist and an infectious disease doc were all collaborating and trying to decide how to best treat.

By Tuesday, my LLMD had me call the hospitalist to see if we had any new information on the bugs and to tell him I wasn't improving.  This led to another hospital stay.  I had to go back in.  Thankfully the nurses from my previous stay thought I was a good patient and they requested me on their floor and gave me a private room. I felt like royalty.  Well as royal as you can staying at a hospital.  They put a new picc line in and we began again on IV meds.

Friday, I went back home.  Finally.  It feels good to be home when you are sick. There I did IV meds.  I was pretty much up and down until January.  In early January, we finished IV meds.  We had my line pulled.  And-I have remained incredibly sick.  I have had a fever everyday since (at least) January 15th.  My fevers are ranging from 99-101.7. I have slept many days away.  There were a few weeks in January where I think I was sleeping 20-24 hours a day.  I couldn't even bring myself to shower more than once or twice a week for about 3 weeks which is so unlike me.  I usually shower in the morning and take a relaxing tubby at night...

Basically, I'm not well at all.  The docs aren't sure what to do with me because at this point my sepsis should be cleared.  But I'm still so very sick.  My LLMD is working with my primary along with some infectious disease specialists.  Late last week, after consulting with other docs, my team decided to do some more testing because apparently after having sepsis, the bacteria can linger in your heart valves and continue to make you sick while not having a positive blood culture.  I'm waiting for that testing to happen.  I should hear something by tomorrow afternoon.

Meanwhile, I am still on oral antibiotics.  I'm also getting infusions once a week of 50 grams of vitamin C.  I'm still running high fevers, yet I seem to have about 2 days of lower fevers and even a few hours of being fever free after the high dose of IV Vitamin C.  My blood cultures are currently negative yet my white blood cells keep climbing every week.

It's been a really long haul.  Usually, during my sick times, I get a few breaks of feeling good.  I haven't had many.  And when I have, it's been really difficult to wake up the next day unable to function again.  I'm generally pretty positive, pretty hopeful but this has been rough.

Two weeks ago, I woke up on a Tuesday and automatically wanted a shower.  No self talk.  No "I think I cans".  I just did it.  And then I thought, maybe I could even leave the house today, by myself.  That was a huge, huge improvement.  Wednesday, was about the same.  Thursday was an LLMD day so long, tiresome, stressful, etc.  Then on Friday, Pat rescued me and took me away for a restorative and relaxing weekend.  One I needed no matter how bad I felt.  I even hung in there through the weekend but by the following Tuesday I was right back down- unable to function.  That was depressing.  A huge blow.

Since then, I've tried to rally.  But something is just weighing me down.  Whatever I'm fighting is tough.  Whatever this is -it's kicking my butt.

I've had several people ask me if I'm depressed.  Maybe situationally depressed because I feel so awful, but the second I wake up feeling even slightly better then I want to go do things, so no- I'm not depressed.  Something in this body is making me really, really sick.  This is by far the longest and the sickest I've been since 2012.  I think since Dec 8, I've had 5 hospital visits.  3 of which I spent way too much time there.

More testing this week.  More meds.  More prayers.  More hope.  More fighting.  That's where I'm at.  I am just really praying that this will soon pass and I can get back to getting well.

All prayers are greatly appreciated.

Thanks to those that have been checking in so frequently.  Thanks to Pat for driving me everywhere, for taking me to all the apts, hospital stays, waiting with me, visiting with me, taking me away from it all for a moment of happiness...And thanks to God, for keeping me here on this Earth a little while longer and giving me the patience to endure.


Friday, November 7, 2014

If you've followed my journey, this is one you won't want to miss. I promise.

Wow, it's been a while.  A long while.  Here's a much needed, more detailed update.

I have been in treatment for three years!  Three years!  Pat and I are both beginning to get impatient, I think.

Since February, I have been back on IV meds.  In August, September and October, I have had short breaks on the IVs due to reactions with drugs, waiting on insurance approvals, etc.

But- here's what's happening... I'm getting well.  ;-)  Can you believe it?  I am.  I can feel it all the way to my bones.  I am getting healthier and healthier.

My most recent bloodwork has looked pretty great.  My CD57 is above 100.  I think it's 124 to be exact.  For those of you that don't know what that means, (it's a controversial test but it's one many LLMDs use-and it's one that has been very telling for me) a 0-20 means you are severely ill.  Like practically dying.  21-60 means you are chronically ill.  61-200 means you are considered in good health.  Most LLMDs want your count above 200, they believe if it is above 200 you are less likely to relapse.  When I started this journey back in 2011, my CD57 was in the low 20's.  124 is a pretty awesome score for me.

My ESR-Sed Rate is in the normal range.  When I started it was off the charts high.  The ESR has something to do with inflammation in your body.  So-it's fantastic that mine's in the normal range.

My most recent Western blott, is no longer CDC positive, nor is it Igenex positive.  Yet, it's not considered a true negative by most LLMDs.  Not yet anyway.  It's going that way though.

When I started this journey back in 2011, I was really, really sick.  I don't even think I knew how sick I was.  I had virtually every lyme symptom on Dr. Burrascano's checklist.  My most prominent symptoms looked like this...

I had constant neuropathy.  My limbs felt tingly and like I had bugs crawling on them almost 24-7.  My headaches were ungodly painful.  The pressure in my eyes and my intracranial pressure was off the charts.  (Like doctors were saying they couldn't believe I had vision or that I hadn't stroked out and died)  My cognitive function was in the tank.  I went from having a Master's degree to being labled cognitively impaired by my neurologist through her testing.  I had trouble forming complete thoughts.  I was getting lost.  I was confused.  My words were often mispoken.  My thought process was extremely slow.  I made huge errors in thinking, doing.  I was a mess.  The brain fog was intensely deep.  So deep I didn't even feel like I was living inside my body. More like I was trapped inside and couldn't see my way out nor function in life like a normal person.  The inflammation in my body was so high that it hurt to be touched.  I remember many nights just being in so much pain I would simply whimper.  My veins felt like they were full of lead.  My fatigue was incredible.  I was a mess.  I could go on and on.  But I was a mess.

Today, I am almost well.  I am ready to think about working.  My neuropathy is completely gone.  My headaches are much less intense and happen less often.  My pressures are in a normal range (with meds).  My cognitive ability is back.  Maybe not 100%, but back that I am no longer considered cognitively impaired.  I'd say, I'm about 80-90% (cognitively) to what I was.  Almost normal.  My brain fog is completely gone.  My body doens't hurt like it used to.  My energy level is better than it's been in 3 years.  I still have some improving to do and stamina to build but it's getting there.  I am almost well.

Right now, my LLMD and I are going to run a few more IVs.  I have a few lingering things...that I think we need to improve on.  I think my Bart and Babs are just kinda hanging in there. (That has improved but not quite where it should be).   We need to kick those guys out of the body for sure.

But I am so close.  So close.  I can feel it.  I am almost there.

My future plan is to finish these last few lingering bugs off with IVs.   Then transition to herbals for maintenance.  I am also going to continue my supplemental IV treatment as I think this is doing wonders for me.  It is fantastic!!!  I am also taking a powder from metagenics that is considered a medical food.  I put it in a smoothie 1-2 times a day.  This stuff has be monumental in increasing my energy.  It's unbelievable.  I have only been taking it for about 3 weeks but it's amazing.

Lastly because my brain was in such bad shape, I am working on seeing a neurologist and getting some new MRI's of my brain so that we can see what things look like.  I am thinking it's going to look pretty great, but I'd like a little reassurance to know that it is infact time to stop the meds and transition to herbals.

So-that's kind of a lot of good things.

I even have been shopping for work.  I have applied to a couple of places for tutoring.  I think my brain is ready to teach again, but I don't quite have the stamina to be responsible for 20+ children 5 days a week.  Not yet, but it's in my future.  It's coming.  I'm almsot back.  I'm almost me again.

And-I am so in love with life.  With this journey.  With my people, my world, my life.  Pat has been the most amazing support system ever.  I would still be a mess if it weren't for him.  I know living with lyme has been a challenge for me, for him, for my family and friends, but the thing is- it gets better.  I get better.  I am better.  I am continuing to get better and better.  Life moves forward and we do too.  This journey has been amazing.  It's been scary, it's been tough, it's been rewarding, it's been enlightening, it's been hell, it's been precious, it's been happy, it's been a roller coaster, it's been so many different things.  I guess what I'm trying to say is if you are fighting lyme...keep going.  Believe in yourself.  Fight. Move forward.  You will get there.  We get better.  I am better.  Soon, I wil be back to me...happy, sparkly, sunshiney me.  I'm so close.  I know it's within reach.

This is one of my favorite facebook meme's.  I love it because it's so fitting for warriors like us.




Monday, November 3, 2014

It feels good to feel good

I've been on this lyme journey for over three years now.  Pat and I are beyond ready for me to be well.

I will post a more detailed update soon, but I did want to post a quick update this evening.

I feel good.  I have had a week, maybe longer of feeling really good.  Pat and I were able to go for a two mile walk on Saturday followed by a drive up to the snow  in the Donner Pass area.  We let Kiah out to play, had a late lunch date and headed home.  When I got home, I still had energy.  I felt good.   Energized.  A bit like the "Ginny" everyone misses.  Happy.  Chipper.  Full of smiles.
 
I do have an enormous amount of medical stuff and lyme updates to post, but right now in this moment just know that I am content.  I am better than I have been in a long time.  I am encouraged.  I am a little more like me everyday.  And with that...I am happy and thankful.  God is good.

Saturday, September 13, 2014

Matthew


Today, Pat and I are headed to Indiana.  To see  Matthew.  Our 20 year old, army boy.  It’s been a year since I’ve seen him.  Never in my life did I think so much time would pass without seeing his handsome face and his wide smile.  

A lot has changed in a year’s time.  He spent 9 months in Kuwait.  He would have to speak to how he liked it as I cannot say for sure.  Yet, I can say I heard him become closer to his buddies than I ever have in the past.  It’s crazy to me (maybe because I’ve never been in the military) how much comrade develops when military guys are on deployments.  I’ve heard him discuss future plans, dreams.  Wondering in and out of ideas about school and how many career paths he’s interested in.  All the while maintaining that he loves he job (not necessarily the Army but operating heavy equipment) but wants to explore his world.

He’s begun a relationship with a former girlfriend from Kodiak.  One that I’ve always liked.  One that I think is a good partner for him.  One that seems to balance him out.  

I’ve heard him take an awful and very personal experience and make some really good choices in a moment’s notice.  And come out, wiser.  Looking ahead.  

We had Matthew when I was 17, and I know I made a lot of mistakesbeing such a young mommy, but today, in this moment as I reflect on his first full year on his own, (almost two now) I am pretty proud at his behaviors, his decisions, his accomplishments.  

It’s exciting to see him as a young adult.  I think it will be a grand adventure watching him continue his path.  Today, I will lay eyes on that boy -the one that continues to smile so brightly, and I will give him a big hug and tell him how proud I am of him and how much I love him.  

Being a parent is one of the greatest gifts.  I am thankful everyday for God giving me him.