How is Jamie feeling?

Hello Friends and Family~

 

    I felt once I came back from Minnesota, I really left everyone hanging as to what was going on.  Some assumed I had relief or had been healed since I came back, others had told me how great or rested I looked.  I get questions every day about how I'm feeling or if i'm feeling any better yet, so hopefully this email will help everyone understand things a little better - and once again, Pray!

    It felt so good to get an answer to the problems I had been facing for so long.  However, little did I realize an answer just wasn't enough, I needed some kind of treatment.  I was put on different medications to help with the temporary memory loss and blindness I was experiencing.  This was due to what the doctors thought was Basilar Migraines.  After different medications that gave me very weird side effects and left me in bed for more days than I wanted to be, we realized this just wasn't right.

    The memory loss has gotten worse.  I now will loss parts of the day completely and not get them back.  Some of you had heard that I went missing the other day. I remember getting ready to leave for church and the next thing I remember is sitting in some restaurant in PA about 2 hours from my house.  I have not driven since May due to my double vision, yet somehow I managed to drive all the way there, pay the toll, and pump my own gas.  All of this I do not remember doing.  I went missing about 9 in the morning and didn't turn up until about 2.  I have also started to lose weight and started to lose my hair. 

       My family realized something was once again overlooked.  We had a test run to check for certain poisons and toxins in my body.  The test came back as quite a shock.  My levels were high in so many poisonous toxins.  I was low in several things as well.  The doctor we are seeing believes that my body is poisoning itself with all these toxins.  Some of which directly effect the neurological system and the brain function.  My body reached it's limit and is beginning to shut itself down (hair loss, memory loss,blindness, seizures,energy level,etc.).  With that being said, the doctor started me on six pills a day that will flush out these toxins and I'm also receiving a shot to boost my body back up with things I'm lacking.

    I'm telling you all this so that you know what is going on, and I would probably tell you anyway since I consider all of you my family.  But most importantly that you know how to pray.  Please pray that the doctors finally have it right and that this treatment I receive will give me some relief and stop anything else from happening.  One things for sure, I know as crazy as these things that have been happening sound, I'm NOT crazy.  When the doctor asked if I was willing to try this treatment in hopes that this would fix me, I said "Well, what else do I have to lose, besides the rest of my hair?"  ha  Thank you to all!  I will continue to keep you updated. Love you!

 

~Jamie

#6. the Mayo Clinic - no more Mayo Clinic

So here i am, sitting at my kitchen counter amidst a fury of toys, bikes, cars, random cheerios, dirty clothes, unopened Horizon Blue Cross Blue Shield envelopes, and out of place EVERYTHING. . .

A few hours from now, Jamie's plane will be landing in Newark Airport.  As a (trying to be good) husband, what thought supposed to cross my mind here? 

A. I can't wait to see my wife again!

or 

B. Dag Baby! I better clean this house before she gets home!

I guess it's irrelevant right now, so i'm going to start cleaning.  Needless to say, Jamie is coming home.  We have a long road ahead of us in getting her finally diagnosed condition under control, but i'm excited to start this new chapter in our lives.  

I would rather go through a life of sickness and poverty with Jamie than an life of riches and health with anyone else.  can i get a witness!?!?

#5. the Mayo Clinic - THE DIAGNOSIS

This is the one we've all been waiting for.  This isn't the first time Jamie has gotten a so-called 'diagnosis', but it IS the first time we believe it.  It will probably be better from her own words, so the following is Jamie's email about her diagnosis. . .

   Hello from Minnesota!

After three very long years, the Mayo Clinic has found my problem, or should I say problems.  I have been diagnosed with a couple different things that can somewhat be related to each other as well.  Some good news and some bad.  I have what they call "Fibromyalgia"  At this time there isn't one sure-fire reason what causes Fibromyalgia, therefore, there is no known cure either.

Fibromyalgia is a syndrome that causes the nerves in your body to be overly sensitive.  Nerves are sending signals to the brain that tell you things that shouldn't be painful are painful.  A simple touch or hug can cause my body to feel severe pain when its really not.  Anything that will heighten my senses such as bright lights, loud noises, strong smells, touch, stress, caffeine, will cause my nerves to send an overload to the brain.  This is what causes my constant pain all over, extreme fatigue and tingling in parts of my body.

I also have Basilar Migraines.  It's a very rare form of migraine that causes temporary memory loss, temporary blindness, and visual changes. . . all of which I have been experiencing.  These Migraines can be more severe due to the Fibromyalgia sending the wrong signals.  They are going to be putting me on an anti-seizure medication that will somewhat calm my nerves down, and help with the migraines as well.

They are calling my "droopy left eye", 7th peripheral nerve palsy.  At this time it's believed Basilar Migraines can sometimes cause permanent damage (although very rare).  Our hope is that the medication I go on will calm that nerve down as well, and it will start to work properly again.

It is so nice to finally have an answer and be able to deal and cope with life ahead.  This medication is not going to fix my problems, but it will keep them under control.

I started a class today to learn how to live with this and not let it take over my life.  Of course the strategies were 'humming' and 'relaxing' to control your pain, but I think we all know the ONLY thing that is sure to work and heal is Christ Himself.  God truly is in control!  Tomorrow we will meet with the doctor for (hopefully) the last time.  He will go over all these things again to make sure there is nothing else they overlooked, or anything else they would like to do.

I could never repay any of you or thank you enough for all your prayers.  I hope to see you all soon.

~Jamie

I would also like to add that Jamie's 'seizure' type 'episodes' seem to have been a mixed reaction to the Fibromyalgia and Basilar Migraines.  I'm gonna call it an 'extra bonus' of this combination.

Hopefully the next update will say that Jamie is on her way home, but we'll see what the next day(s) will bring.

#4. the Mayo Clinic - w/ guest poster Linda

Today we have a special guest poster.  It's non other than the wonderful. . .the infamous. . .the tireless. . .the forever loving. . .the mother of the mystery herself. . .Linda!!!

Jamie had a rough day of testing, so here is the update from the mouth (actually fingers) of Linda:

Hello from Minnesota to each of you,

God certainly has been involved in all of the details here at the Mayo!  Today was a very tough day for Jamie.  Both mentally & physically.  We were scheduled for 2 appointments today and were able to add another 1 which was originally scheduled for tomorrow.  This was an answer to prayer as that frees us up to move our appointments around and, Lord willing, have an earlier exit date.  Please pray that our Neuorology appointment, which is next week Oct. 7th, would be able to be moved to this week.  

We both are amazed (why, I don't know) that EVERYTHING is just falling into place.  Why do we doubt what God promises?

A quick run down on today:  

7:45am appointment with Endocrinologist.  Apparently in Jamie's records that we brought from home was a report that she had a lump on her thyroid (which no one mentioned back home).  The doctor, without even talking insurance, payment or involving the Business Office said "I would like to do an ultrasound on the lump, and it will be on me".  During the ultrasound she says she'd like to do a biopsy (which was done within 30 minutes!).  It was very uncomfortable and painful for Jamie. Eight needles in the neck.  

The next appointment was an ultrasound of the neck!  When she was finished at that appointment the Endocrinologist called and asked if we could come back as she had the results.  The biopsy was not cancer, PRAISE GOD!  We had 25 minutes to get to the. . .

Next appointment:  Transesophagea Echocardiogram (put under - tube down her throat to check behind the heart for any holes).  

Needless to say we exited the HUGE clinic via-wheelchair to the shuttle.  She rested a bit and we went downstairs in the hotel for dinner as she hadn't eaten since 6:00 this morning.  For those of you who know Jamie well, this won't surprise you:  she still had a smile for everyone and couldn't have been any nicer!!!

Her pulse rate and blood pressure continue to be very low. So many have commented on that (whatever that means, I don't know).  All in all we are both VERY encouraged and just continue to thank God for allowing us to be here. We thank all of you for your prayers and support. We'll continue to keep in touch.

Love,  Linda - and Jamie   :-)

#3. the Mayo Clinic - who's paying? wait, how much?

Well, we just got word that our health insurance DENIED the approval for Jamie to get treated at the Mayo Clinic.  We had to pay $3000 just to talk to the initial head doctor, and now another $8500 for the initial testing they have planned.  As of now it's going on the credit card, but where will it end?  I feel like we're gambling with the skills of the doctors at the clinic. . . "i got $11500 says they'll figure it out in the first couple days!"  This is so overwhelming it's almost comical.

We are going to continue to hound Horizon Blue Cross Blue Shield to try to get our appeal to move along faster, and hopefully we'll get approved the second time around.  If not - hopefully our house sells soon - because Mansfield Village Apartments are sounding really nice right about now.

This is the type of sweet deals you get from insurance companies. . .

On a good note, the doctor(s) that reviewed all of her previous records were impressed with our (Jamie's) organization, and said they had a lot to work with already.  Apparently there were a few 'red flags' from prior testing that were never followed up on (great in-network doctors).  They are going to do some general testing along with some area-specific testing based on previous findings and inclinations they have already.  Thank you VISA for making this all possible.

#2. the Mayo Clinic

well, Jamie is at the hotel near the Mayo Clinic waiting until morning for her first appointment.

here is a copy of the email she sent to some family/friends. . .

Hello to all of you!!!!

My mom and I arrived safely in Rochester, Minn. today and are ready for a much needed restful nights sleep!   The people here are so friendly and very helpful!   The Mayo Clinic had a hospitality/info. desk at the airport which really was very helpful.  The women there called over to the Mayo Clinic to check tomorrow's schedule for us and she found out that I am to fast tonight so that if testing is started tomorrow, I'm ready to go.  Registration is at 9am and our first doctor's appointment is set for 9:45am at which time the doctor will try and determine which floor I should be assigned to or which tests should be started.  Please continue to pray for the doctors as they hear my story and try to figure out what is going on.  Thank you Barb for getting us to the airport safe and sound and with time to spare!  Thank you Oma & Granddad for all you do for me, family & friends for all of your support, love & prayers.  I will try to keep you in touch by way of e-mail.

Much love,

Jamie

#1. the Mayo Clinic

i better start numbering these updates, cuz it could get ugly.

For some reason i haven't been looking forward to writing this post.  Maybe in the back of my head i didn't think this day would come.  In some weird way, i still don't believe it.

Tomorrow Sept 24 @ 1pm Jamie's flight leaves for Rochester, Minnesota (or should i say - Meenehsawta).  With a doctor referral (thanks Dr. Theune) we were able to get Jamie's appointment moved up. Praise God.  The first 7-10 days she will be accompanied by Linda - her mom (i need to stay back and run the family business while my parents are away).  The following weekend i will be flying out, taking the place of Linda, and staying with Jamie until she is released (diagnosed & treatment begun - we trust).  Her first actual appointment is Friday morning @ 9am.  The first 5-7 business days will be the Clinic thoroughly hearing and talking about Jamie's entire story, asking questions, and reviewing the HUGE stack of medical documents/films from the past NJ doctor visits.  They may begin preliminary standard testing during this time as well.  If (we're assuming not) nothing is discovered through this testing, Jamie will be assigned to whichever floor they deem fitting for her condition/situation/symptoms.  From there, the future is unknown.  How long will we be there? What will they find? Will they find anything? Is it all in our heads? *sighs, gets on knees and begins to pray*. . .*again*

As an added extra bonus - the approval we thought we had from our insurance company was apparently 'mis-information' given from an apparent 'mis-employee' of HBCBS.  We have all been on the phone all day (all week) over this trip, trying to get an actual pre-approval number.  I won't go in to detail, but anyone who's ever dealt with health insurance companies already knows what i'm talking about.

As far as the stay is concerned, the Mayo Clinic treats you as an outpatient.  Inbetween appointments, and at 'night-night' time we will be staying in the comfort of a nearby hotel, at the comfort of $100 a night.  I'm not complaining, i am overjoyed that we are potentially going to get an answer here, i'm just letting out a little squeak of frustration about the (yet unknown) cost of all this.  Besides, i hear Meenehsawta is nice this time of year.

The Hemberger and Lemp families would like to ask and encourage everyone to continue praying for Jamie, the doctors, and everyone else involved. . . that we will get a final, clear, definitive answer to these issues that Jamie began to experience a couple years ago.  We have faith that this is the answer we've been praying for, and we are trusting the Lord will supply us with all of our needs (in this matter and our entire lives) according to His riches in glory. (don't forget the 'in glory' part. . .thats the biggest part of this whole adventure, think about it)

I will be constantly updating as tests are run and information is gathered.  Check back often, or if you're viewing via Facebook, lookout for my 'Notes'. (or if you're a nerd like me, subscribe to the RSS feed) 

Thanks ahead of time for your prayers.

Finally a fix?

Well, after seeing almost fifty doctors and feeling like everyone gave
up on us, we finally have some place to go...

If you've been following the drama and sadness of Jamie's current
state of health, this is the update to read.

We will, if the current plan works out, be heading to Minnesota on
November 11th. Jamie has been accepted into the Mayo Clinic. The
first, and maybe only time we are there will be around a week long,
if not more.

We will be seeing a Hemotologist between now and then, so maybe he
will find something new before we start our journey to Minnesota.

I will be doing my best to give detailed updates along the way, though
there may be a few entertaining posts in between if I feel so inspired.

Please continue to pray for healing for Jamie, and the strength to
continue the pursuit of a diagnosis and the proper treatment.

Thank you all,
Mike

like mother, like son

home at last

Well, we finally made it home yesterday.  Jamie can barely walk.  Besides the big incision in her belly, she's got a hole in her spine.  Kind of.  Before the C-section they did a spinal tap to see if they can find what is going on with her.  Because of all the different things they are searching for, they needed to take a lot of spinal fluid, which in tern means using a BIGGER needle.  This big needle naturally caused a big hole, which makes some of her spinal fluid leak out of where it should be.  Spinal fluid acts as a cushion for the brain, and without as much as you need, the brain sags.

what it means? 

killer headache.

the fix?

deal with it.

it could take weeks to fully heal and replenish itself.  yes WEEKS.

Anyway, all of the blood work that Dr. Gaito did came back negative.  We are still leaning towards Lyme Disease (neurological lyme to be exact), But Dr. Gaito does not want to start any treatment until she can be more sure, therefore we must wait for all of the results of the spinal tap, which of course. . .

may take weeks.

*if you're not aware, lyme can very often show a false-negative because of the shoddy testing available at this time. it's often clinically diagnosed/treated, but we need to make sure all other diagnoses are tested to prevent misdiagnosing and mistreating.  

there is currently a major controversy concerning lyme.

for more information: 

see here for the truth.

see here for the lies.

i'd say she's ready. i'd hesitate to say "we're" ready.

that is one. big. belly. babe.