My Story

My name is Rori and I am a Type 1 Diabetic.  I was diagnosed at age 31 in 2013.  I'd like to tell you that my story started when I was diagnosed but the truth is that it didn't begin there!  Pull up a chair, friends, this story is about to blow your mind...

In 2007, I moved into a house with my cousin where we both noticed that we began to have heightened thirst and although my aunt (her mother) suggested that we get checked for Diabetes, we both blew it off because THERE WAS NO WAY we had Diabetes - we were young, active and healthy.  How could either of us have a problem like that?  This was my ignorance showing that I knew very little about Diabetes at the time. 

Moving on, I got married to an amazing man in October of 2010.  At this time, I began the process of changing my name and changing health insurance, as I assume is common with many newlyweds.  Changing insurance though, involved getting a new doctor, who required a consultation appointment to discuss my health.  I chose to go to the same doctor as my husband for convenience.

At my consultation appointment with her in April of 2011, we talked about my good health, family health history and...my extreme thirst (and therefor excessive urination).  She called for blood tests for both Diabetes and Thyroid problems then sent me on my way.  I ran over to the lab the same day and willingly gave my blood.  Sometime later (a week maybe??), SOMEONE from her office called and left me a message telling me my results were negative - I did not see these test results myself.  I must just be hungry and thirsty due to my running.  The following month, both my husband and I went back into the doctor's office for flu-like symptoms and were seen by a nurse only who treated us and sent us home with prescriptions - we were both better within the week.  This same year, I began my "running career" where I signed up for and even successfully placed and medaled in a number of running races (mostly 5Ks = 3.1 miles and 10Ks = 6.2 miles). 

In 2011, I was at my running prime!  I was filling my weekends with races and hitting the gym when the weather did not allow me to run outdoors.  I acquired an impressive water bottle to help quench my unending thirst - a whopping 48 fl oz. nalgene bottle from REI that I filled and re-filled up to 5 times daily.  This is also the same time that my diet (although previous highly caloric anyway) went from 5000 calories/day to almost 10,000 calories/day (average dietary needs are around 2500 calories/day).  I was hungry, I was thirsty, I was running 40-60 miles per week.  My weight which was usually around 100 lbs was closer to 95 lbs of lean muscle mass and thought NOTHING of this.  After all, my doctor said I was fine.  I would eat up to 6 meals a day not including my many "snacks" (and Starbucks, of course) and would "metabolize" up to 10 lbs every night.

January 22, 2012: I met a major life goal of running a marathon before I turned the ripe old age of 30 years old.  But the following week on a 9 mile run, I allegedly tore my meniscus and began seeing specialists for surgery.  As it turns out, nothing was torn but that I did have Patellofemoral Pain Syndrome = good old Runners' Knee and required physical therapy (PT). 

November 2012: 9 months of PT later, I signed up for another race.  Not one to be hasty, I chose a half marathon with my bestie, which led to <drum roll please> the identical injury on my other knee!! How could that be?  Every PT exercise I did with my right knee, I did with my left; both should have been stronger!  Back to PT and with an early winter coming, I decided to give my body a break and stop running for the year.  I had my wisdom teeth pulled JUST BEFORE Thanksgiving, which was the beginning of my marked weight loss.  At first we just thought I lost weight because I couldn't eat much after the teeth were removed, but I was eating 6 meals a day again and still loosing weight.  Is this real life?  I rapidly dropped from my standing 95 lbs down to 80 lbs before Christmas and held at 79 lbs into January 2013. 

January 2013: I head to Colorado for a visit with my friend for her baby shower and she is diagnosed with Gestational Diabetes.  We go to her doctors appointments and learn as much as we can about this and she begins taking shots of insulin.  We are both overwhelmed but she only has to do it for a month, then she is done and the baby will be here.  <phew>  We joke that we should test my blood glucose (BG) as well but I have a doctors appointment scheduled for when I get back and we don't think twice about it - I am on a gluten-free, dairy-free, sugar-free diet right now in hopes of getting rid of whatever is in my system that's causing this problem. Maybe I need to take probiotics?  Maybe the bacteria in my guy is messed up.  Oh well, it'll go away soon.

January 22, 2013: I FINALLY got an appointment to see my doctor (apparently she was super busy and I didn't have an "emergency" or so I thought!) and as it turns out she stayed home sick on the day of my appointment, so I got...HER HUSBAND!  They own their practice together and he was not accepting new patients when my husband started going there so we had never seen him before.  Over the last few years, I had heard that he was a great doctor and I was hopeful that he would be able to help me stop this weird/sudden weight loss.  My husband went with me to this appointment.  We discussed my health in detail and why I thought I was loosing weight.  He, of course, felt that I "look(ed) fine" but because I was concerned about the weight loss, he called for blood tests again but this time more.  He was surprised that I had been tested (by his wife) with negative results 2 years prior and suggested that I had "developed" Diabetes of some sort.  This seemed so unlikely.  I was so healthy. After the appointment, I rushed over to the lab and did my blood tests.  At 7pm that same night, he called my cell phone and very calmly explained that I definitely had Diabetes although he did not know if it was Type 1 or Type 2 as my results came back "inconclusive" but based on his knowledge, I was not a "candidate" for Type 2.  He ALSO said he felt I should go to the emergency room as my blood glucose (BG) was dangerously high and that my A1C was 13.9 but after talking for 30 minutes, he changed his mind.  My husband, having worked in the medical field for the last decade and a half had experience with Diabetes but only in extreme situations - usually HYPOglycemia (low BG) not HYPERglycemia (high BG)- and we didn't really know what this meant for us but we were told to pick up insulin at the pharmacy in the morning and come straight back to the doctors' office where I would learn how to give myself injections and begin to lower my BG.  Sounds easy enough, right?  We saw no reason to go to the E.R.

January 23, 2013: When we showed up at the office, insulin, meter and needles in hand, we were IMMEDIATELY shuffled off into the farthest - and smallest - patient room from the front office where BOTH doctors and 3 nurses filed into the room behind my husband and I.  Yes 7 of us.  My world was spinning.  Why did we need so many people in this small room?  Don't millions of people live with Diabetes every day?  It CAN'T BE THAT HARD. 

At this point, we were informed by the doctor that based on my fasted BG of 311,  that not only did I have Diabetes, but that two years prior when his wife had tested me, I had Diabetes then as well with a fasted BG of 315.  His estimate was that I regularly had BG's in between 500-700 on a daily basis.  Amazingly, no Ketones in my urine and no DKA/Ketoacidosis.  NONE of these numbers or terms meant anything to me at the time.  The room was silent.  I think they were waiting for us to react but I was just trying to process...
The only thing that I could comprehend was that two years prior, they knew I had this.  How could that be?  Could these health problems - injuries, weight loss, headaches, exhaustion, starvation, thirst, etc. - have been prevented?At first, his wife - MY DOCTOR - tried to blame this on me and accused me of not treating my Diabetes.  UNBELIEVABLE!  I informed her that I was told my blood test results were "negative" and that if this was the case, why hadn't anyone said anything to me the following month when I came in for the flu???  She was back-pedaling.  She tried blaming everyone in the office and ultimately said that I just "slipped through the cracks" but she still took no responsibility for me having been overlooked.  I feel like this is KIND OF a big deal and that your health cannot just "slip through the cracks" at your doctor's office. 

Looking back, I can see why they would panic and I now understand why so many people were in the room.  They were liable - this could be malpractice.  Of course, in the moment, I was only trying to figure out what this meant for my life and because my husband remained calm, so did I.  Without him, I do not know how I would have handled the situation.  Regardless, I was told that for some unknown reason, my pancreas had stopped producing insulin and I now needed to give myself insulin.  On this day, I became my pancreas.

We left the doctors' office feeling overwhelmed but it's lunch time and we need to eat.  I'm not hungry but my wonderful husband takes me to Quizno's, where I love to get a Turkey Bacon Guacamole sandwich.  I look up the carbohydrates online and decide that I'm not ready to do this in public so I'm going to give myself my injection in the parking lot in the truck.  I can't do it.  How will I ever poke myself??  I'm not AFRAID of needles but I just can't bring myself to do it.  I say to him, "You do it!"  And he says no.  I have to learn to do this myself.  I stand in the parking lot and cry.  I love food so much and now I'm never going to eat again because I can't poke myself with this little tiny baby needle.  Somehow, I get the courage to QUICKLY stab myself in the stomach and press the button (at the time I was using an insulin pen, not a syringe, so you just twist the end until you see the number of units you need then press it until it has been injected).  PHEW!  I can eat again!  Wait, it's only lunch...I'm going to have to do this again???

February 1, 2013: My doctor (I no longer see the wife, I only see the husband) have referred me to a specialist.  I get to go to a new doctor called an Endocrinologist.  This doctor, along with a Certified Diabetic Educator (CDE), is going to help me with my Diabetes and get my BG back to a "regular" number.  [People without Diabetes have a normal BG in the 80's or 90's because the pancreas releases insulin to compensate for the food and beverage consumed.]  I currently have BG's in the 500's.  I'm told we will have to "bring me down slowly."  I don't know what that means but I am excited that I gained 13 lbs in 1 month and am back to my old self again!  I feel good, I eat normal meals, I'm not starving or thirsty and <drum roll please> NO KNEE PAIN.  I meet my new doctor and although she is an hour drive away, I think I like her and I'm excited that someone knows something about what's wrong with me.  I meet my CDE and she begins to explain to me in more detail when I should take my insulin, what I should eat and how much I should eat per meal.  This blows my mind, yet again, but I try to follow her instructions.  I am to physically log every meal, every beverage, every snack, every activity and FAX them to her weekly to show her that I can do math.  FIRST OF ALL: WHO HAS A FAX MACHINE?  Cause I don't... SECOND OF ALL: When did eating pizza become a math test?!?  Ugh!!  I do it.  I'm good at it.  My blood sugar is down in the 300's before March!  I feel very accomplished even though I still have a long way to go.

March 1, 2013:  I don't feel good and all of my doctors shifting blame to one another and then back on Diabetes.  Although my BG is coming down, my CDE is hounding me for the food I eat.  I can seriously NEVER have juice EVER AGAIN?  Even if I take insulin for it?  That's unrealistic.  And no cereal?  Is this some kind of a joke?  I love cherries...how do I calculate that?  My feet are killing me - the pain is getting worse and they're calling it Diabetic Neuropathy.  I have nerve damage now??  Is this going to last forever?  My endocrinologist does more blood tests to determine whether or I am a Type 1 Diabetic or Type 2 Diabetic.  My test results come back "inconclusive" yet again but she believes I am a Type 1 and since I need insulin, that's what we'll go with. 

In the mean time, I am no longer having regular bowel movements.  What's that all about?  And I've started vomiting on a daily basis.  I'm nauseous and I don't know why.  I've had over 20 pregnancy tests since January.  That's not it.  Since my doctor and my endocrinologist don't know what's wrong, I get sent to another specialist - a Gasteroenterologist - who says I need to have an Upper Endoscopy.  HE concludes that I have Gasteroparesis.  The nerve damage from Diabetes is causing the valves in my stomach and my intestines to stop working.  I cannot process food.  But wait!  We can treat this!  The drug prescribed for treatment of this problem is called Reglan.  **PLEASE SEE THE VERY SERIOUS PERMANENT SIDE EFFECTS OF THIS DRUG IF YOU DO NOT KNOW ABOUT IT.** 

I might have unknowingly continued taking Reglan, per my doctor's instruction, if my nausea and vomiting had not gotten WORSE after taking it.   I'm back down to 80 lbs.

April 1, 2013: I have been vomiting up to 15 times per day for a month now and I'm loosing weight again.  My doctors keep telling me it's Gasteroparesis because of Diabetes, so I have to call my endocrinologist.  She will not talk to me directly and ONLY wants to see me every 3-6 months.  She insists that I speak with her "nurse" on staff when I call.  HE tells me that if I feel as bad as I say I do and if I'm really vomiting that much, I should just go to the emergency room.  Is that really a solution?  I don't want to abuse the system and I don't feel like I have an emergency.  I don't have a broken bone, I didn't get in a car accident, I didn't get stabbed or shot; I don't have an emergency,  I just can't stop vomiting...

I get to the point where I can no longer keep down water and am dizzy and disoriented - I don't know the last time I kept down a meal, so to the E.R. I go.  I get SIX (6) bags of saline and am severely dehydrated.  They hydrate me, give me Zofran for my nausea and admit me to the hospital.  The nurses and doctors take care of me.  I feel great and I'm hungry again!  I keep down an entire day's worth of food and I think I'm cured!  I go back home happy as a clam but within a week or two, I'm back in the E.R. - same problem.  I need to stay hydrated but I am vomiting so much that I cannot keep water down again!  We are so frustrated with the lack of help from my doctors that we think we need a bigger/better system.  This time we go to the UC Davis E.R.
My brother-in-law is getting married but I haven't been discharged from the hospital!  How will I make it to his wedding?  I still don't feel great but my heart is breaking that I cannot be there.  My loving cousin/former roommate stayed with me and missed the ceremony with me just so that she could bring me to the reception!  By the end of the month, I come to the realization that despite multiple calls to my doctors, no one knows how to help me.  I need someone who can...but who?  My family begins staying with me while my husband goes to work because I am vomiting so much and cannot be left alone - what if I need to go to the E.R.?  This is when my family saved my life.

May 2013: We officially decide to go somewhere with more doctors, more specialist and more knowledge but that means changing health groups all together.  The closest UC Davis doctor's office is exactly 28 miles away but my insurance measures from city center to city center which is OVER 35 miles apart and therefor father than I am allowed (30 miles).  SERIOUSLY RIGHT NOW???  My insurance out-sources their call center and I spend hours on the phone attempting to change my doctor/group but am "not allowed."  We have an HMO and if we want to see a specialist outside of our group, we have to have a referral.

With the help of an amazing insurance representative, I was successfully switched to the UC Davis Health System and began seeing their doctors...but I still needed referrals to see specialists.  With the help of my new/awesome general practitioner, I began my journey through a series of UCD specialists, each one doing their best to diagnose me or send me on my way to the next one if they couldn't help me.  I also visited the E.R. every 2 weeks when I got to the point of no longer being able to keep water down and began vomiting blood.  There was absolutely no way you could have convinced me at this point that this is the life of a Type 1 Diabetic.  People live with this all day every day and do not have problems like this.  I am now 75 lbs.  All my doctors say I "look fine."  They obviously did not know me before and we begin bringing pictures of my old self to my appointments. 

My husband and family begin doing their own research.  They ask every doctor as many questions as they can.  Everyone goes to every appointment and we begin recording what the doctors say.  I see multiple GI specialists.  I have a new Endocrinologist.  What if I have a parasite of some sort? I see an Infectious Disease Specialist. I've traveled the world, this could definitely be a possibility.  I go to an Allergist.  Nothing.  No one can explain it.  It must be Diabetes.  More E.R. visits.  Ambulance rides.  So much hydration.  Is this really the life of a Type 1 Diabetic??? 

Paramedic friends are coming to my home to hydrate me.  This is when my favorite paramedic saved my life.  She insists on transporting me and knows that the very best E.R. doctor is working.  After seeing him for the 2nd time in the E.R., he mentions that he happens to live down my street and checks in on me when he drives by.  I am filling prescriptions for Zofran like it's my job.  The pharmacy technicians recognize me from a distance and have my prescriptions ready before I get to the counter (I am pretty slow moving these days). 

In the midst of my chaos, my father-in-law gets hit head-on by a truck while riding his bicycle and winds up in the E.R.  Almost everything on his right side is broken.  Here we are at the hospital again!  I basically live here.  I know he is in pain but I can barely sit in the chair provided to keep him company.  The pain of sitting is so severe that my vision blurs but I can't stand very long either.  I can't even think about other people's pain or problems because I can't take care of myself.  My poor husband!  His father is in the hospital and his wife can barely stay out of the hospital!

June 2013: I can no longer function like a normal human being.  I cannot work.  I have lost enough weight that my body aches and it hurts to sit and lay down so I cannot sleep.  My BMI is so low that I am cold and it's 100+ degrees outside.  I cannot sit in the car because the slightest bump in the road is painful.  I am not hungry and I don't want to eat/drink because I'm just going to throw it up anyway.  Back in the E.R.  I've been there 14+ times this year but for the first time, an E.R. doctor accuses me of being anorexic.  I'm furious and so is my family, but you know what?  In one sense, he was right.  My body WAS anorexic.  I WAS throwing up.  Just not intentionally and I couldn't stop it.  My BG was so low I stopped taking insulin completely.  If I was Diabetic, why didn't I still need Lantus?  This makes no sense, but it is what happened. 

This is when my husband saved my life.  He filled out an online application to the Mayo Clinic in Rochester, MN and they called and reserved me a bed for late June.  We were ecstatic.  The best place in the country was going to figure out what was wrong with me!  Then we got a call back.  I had an HMO and they would not cover my visit which could cost anywhere from $5000 to over one million dollars depending on your condition and what type of treatment you needed.  We don't know how we're going to do it but we have $5000 so we're going to go.  WITHOUT MY KNOWLEDGE, that same bestie that I ran the half marathon with started a fundraiser for my "mystery illness" in an attempt to raise $10,000 in hopes of that helping me with my medical bills since we have already spent $30,000 on my medical "problems" including E.R. visits up to this point.  In less than 5 days, she hit her goal and upped it to $20,000.  I cried every day.  I couldn't believe how many people put out what they could to help me with my unknown problems.  If Mayo was going to cost us more than $10,000, we couldn't have done it alone.  We had spent so much already.  She raised $15,880.  AMAZING.

This is when my best friend saved my life.  With the help of so many generous people, my best friend went above and beyond to do what she could to help me.  My husband, my mother and I flew to Rochester, MN not knowing what to expect but we had high hopes.  If anyone could figure me out, it would be Mayo.  We left the last week of June and I was given a special pillow from my wonderful in-laws to use to sit on the plane ride.  I barely made it without throwing up.  We ran from doctor to lab test to doctor to scan to doctor to x-ray to doctor.  My weight is dropping rapidly.  I'm barely 70 lbs.  I now wear a little girls clothing size: 8.  I cannot walk nor do I have the energy to.  I am wheel-chair bound and I'm only 31 years old.  How can this be?  I was running marathons last year.  Here's the problem: my health is PERFECT on paper. Our wonderful friends drive from Colorado to Minnesota to keep us company in between appointments.  Despite my deteriorating health, a distraction was well needed!  We mainly saw doctors in Endocrinology, GI and then at the very last minute, a Neurologist.  She felt that she was the wrong person to help me but called for some chance tests before we headed home.  In the end, Mayo cost around $50,000 for 1 week.

July 4, 2013: We spent every last penny at Mayo and ran every test they could run.  I gave up more blood than the Red Cross itself could ever wish for.  I came home feeling just as awful as I felt before I left and with nothing to show do it.  Back on insulin since my BG's suddenly sky-rocketed, back to the E.R. and feeling exhausted from my deteriorating health.  I couldn't sit, stand or lay.  I wasn't sleeping but I had no energy to stay awake.  How do you function?  I dropped down to a sickly 68 lbs with my bones protruding out of my skin in every possible place.  Although I could see myself in the mirror every day, it wasn't until I saw a picture of my body that I cried out in horror/disgust at the state my poor little body had deteriorated to!  Where had my athletic, muscular figure gone?  Would I ever recover from this or had the damage been done?  I could barely walk from the bed to the couch without crying in severe pain.  I was dying and no one could save me.  We knew it was something more than Diabetes but what could it be? 

What seems like a thousand X-Rays, CT Scans and Ultra Sounds later, it appears that all of my organs are functioning and fine (even though it doesn't feel like it).  I am vomiting as many as 30 times per day - I loose count after that - but I wait until it's less than 5 minutes apart and start seeing blood before I go to the E.R. these days.  It's pretty much the only reason I leave the house.  At home, my mother and I organize my medical records and tests.  I have THREE 3" binders of medical records that I have accumulated since January.  Something in there must have the answer to my medical problems!  I have provided copies to every doctor I have seen. 

In late July, I notice that I have not received test results from the Mayo neurology blood tests and contact my main doctor there asking for the results.  It has been weeks, but they should have posted by now.  Within 24 hours, he responds to me!

"Oh yes," he says in his email, "you are positive for ganglionic acetylcholine receptor antibodies (AChR). Come back in to our neurology department for high dose steroids and IVIG."  Quite simply, my body is over producing a very specific antibody which is paralyzing my small muscle tissue and organs.  We can barely find anything out about it on the Internet and we obviously aren't going back to Minnesota so I contact my doctor and tell her that I NEED to see a Neurologist - a specialist that I had asked to be sent to months previous and had never seen.  UCD can't make me an appointment until October.  This is unacceptable - I ask to be put on a same-day waiting list.  We will be ready to leave at a moments notice.  We know what is wrong and how it needs to be treated, apparently, but NO ONE feels a sense of urgency to treat me?? 

REWIND: During my father-in-law's recovery from his accident, he received a call from a friend who offered him the opportunity to go to Stanford for any treatment that he needed, if he was interested.  Instead, he asked if he could pass that invitation on to me.  We did not know what that entailed but perhaps we could get into a neurologist sooner?  We received a special contact at Stanford and were immediately scheduled for the soonest available appointment: August 15.  That's two weeks away - can I stay out of the hospital until then?  We don't care - we will take whatever we can get!  This is when my father-in-law saved my life.

August 9, 2013: Back in the E.R.  I can't think.  We know what's wrong now and we tell the E.R. doctor who has clearly never heard of this crazy problem.  He looks it up and comes back with a technical article on it that we cannot understand but gives us a copy.  He says he will do everything he can to stabilize me so that I can get to my Stanford appointment.  No joke, UCD calls me with an appointment: August 13.  Really?  Two neurology appointments back to back?  I'm doing it.  We need second opinions these days!!

We get out of the E.R. in time to make it to the UCD appointment.  We hand him the e-mail from Mayo and the article from the E.R. doctor.  He knows exactly what is wrong but has never treated it before and claims that it is very rare.  As far as he can tell, there are only 3 documented cases known in the USA to date.  And I have 9x the maximum amount of AChR in my blood.  He wants to start steroids and IVIG as Mayo suggested but I will have to wait for insurance approval to begin.  I have an HMO.  The process is long and tedious.  Again, I feel a sense of urgency to get treated.  To date, my insurance has spent over $450,000 on me and the year isn't over yet.  My cheapest hospital visit was $10,000...let's save some money and do preventative maintenance instead of damage control!  We drop the bomb on my new neurologist and tell him that we also have an appointment at Stanford.  He pauses.  He wants to know what they have to say too.  He says we will wait until after that appointment to proceed with treatment but wants me to start steroids immediately. 

We leave and head to Stanford with my 60mg/day of steroids.  We spend the night - possibly the best sleep I have had in months in a crappy hotel that we booked last minute.  I'm finally going to get better!  I KNEW it wasn't just Diabetes!! My insurance considered Stanford "out of area" but not "out of network" and still did not cover it.  We didn't know how much Stanford was going to cost us but we had to go anyway.  The Stanford neurologist hands my medical records to his nurse and asks that I "sit" on the table.  With difficultly and pain, I oblige.  While she is scanning through the seemingly endless records, he begins diagnosing.  Before she even gets to the Mayo information he knows what's wrong with me.  He knew just looking at me and by running his finger across my stomach?  WHAT!?!?  Where has this man been all year?  We are in sheer shock.  The nurse confirms it with my test results.  In his heavy accent he says, "We must start steroids RIGHT AWAY and plasmapharesis."  We agree.  This seems to be a quicker solution! 

We had asked my UCD neurologist about this and he felt that it was too aggressive considering my health.  The difference between plasmapharesis and IVIG is basically removing the antibody from the system completely (although it will produce it again ultimately at some point) versus distracting the body from producing the antibody until you have a normal amount in your body again.  Oh you want to know the price difference between the two.  Good lookin' out.  Plasmapharesis (per treatment) = $2500.  IVIG (per bottle - I only need one but it is based on your size and weight) = $26,000.  Stanford was a gift from God.  Somehow we had been fast-tracked into their system and little did we know, we had seen their very top neurologist.  My father-in-law will tell you that he believes that this is exactly the reason he was hit by the truck...so that I could go to Stanford and get my treatment.  Despite my pain level, we are elated.  I'm going to get better!!!!  And what's more, this doctor tells us, is that my Diabetes is a symptom of this antibody over-production.  My pancreas is paralyzed.  It may be permanent damage at this point but it is an explanation, none the less.  We come back to UCD with this information and pursue plasmapharesis.  My doctor accepts this plan and we begin treatment...as soon as I get approval.  I wait, impatiently, doing my best to stay hydrated but I wake up in the hospital and it's September and I am still living on a regimen of taking anti-nausea medications (yes multiple) every 6 hours.  Most make me drowsy but where am I going anyway and maybe I'll get some sleep?  My weight is in the 80's again, thanks to the steroid, I believe, and I am able to keep a little bit of food down.  I'm trying to eat 3000 calories/day but it is difficult, especially when I have absolutely no hunger.  

September 23, 2013: I am able to go through 3 Plasmapharesis treatments before they send of my blood tests to, none other than, the Mayo Clinic.  Mayo is the only place in the country that does these tests and it will be a 6 week wait for results so we will continue treatment until then.  During this time, my neurologist says I can begin to taper off steroids and I am happy to!  I feel very emotional and angry on steroids which is hard because this is a time when I think I should be feeling good about getting better.  I get down to 10mg/day!  Almost done!  I am almost back to 90 lbs and so excited to be feeling better - I even manage to go to a wedding...AS THE MAID OF HONOR!  I missed a couple already this year and could not be happier that my health is turning around but I don't want to over-do-it either.

October 7, 2013: I can't keep fluids down again and I am so severely dehydrated and vomiting that my body is convulsing beyond my control and my heart is so weak that I cannot produce the blood flow strength needed to operate the machine for plasmapharesis but the plasmapharesis nurses try again and again while I am in the hospital because they know how much I need this.  The dehydration is so bad that I am bruised from arm pit to wrist on both arms because they cannot successfully get a vein.  My doctor visits me IN THE HOSPITAL.  I do not remember this.  I am conscious but have blacked out for over 48 hours.  Maybe that's called a brown out?  My doctor has decided that we need to move on to IVIG.  My body can take fluids all day, but it doesn't have the strength to give them.  Only one hold up...insurance approval.  While we wait, I spend only 4 TOTAL DAYS out of the hospital this month.  I don't even remember what life is like outside of the hospital.  I am back to 60mg/steroids/day.  They think the taper down happened too quickly.  FAIL.  I just want my family to go home cause the nurses will take care of me.  I feel so bad that I have been such a burden on them.  How will I ever be able to leave if we don't start the next treatment??  Remember that amazing insurance representative I mentioned earlier?  This is when she saved my life.  She got my HMO changed to a PPO before open enrollment.  Maybe you don't know how big of a deal that is but it's virtually impossible.  She made it happen.  She jumped through hoops for me; above and beyond her job responsibility and despite her own life and medical problems!  I drop back down to 81 lbs and try desperately to eat and drink as much as I can stand, but I have not had an appetite in months.  My stomach does not even growl and nothing sounds good.  As a matter of fact, most smells nauseate me.  My husband and in-laws do their best to accommodate me and I manage to gain a little weight back.
 
November 11, 2013:  My IVIG treatment begins at a UCD cancer center.  These wonderful women got me in AS SOON AS they received insurance approval.  In the mean time, my blood tests are back in and plasmapharesis was a success!  It lowered my antibody level from 9x the maximum amount to 3x!  That's a lot for just 3 treatments!  IVIG is scheduled to begin with 2x/week for 2 weeks, then 1x/week for 2 weeks, then every other week 13 weeks then we will test my blood again.  Holy smokes!  IVIG takes 7 months?!?!  Whatever, I'll do anything to get better!  I will stay on steroids this entire time and taper down much slower this time.  I can barely control my emotions and often break out in hysterical fits.  My extremely patient husband deserves a reward and a vacation for putting up with this!  I weigh 93 lbs!!

Something happened in December.  The steroids caught up with me and I got the almost all of the side effects listed online.  First came "Moonface," followed by "prednisone belly" and the dreaded "camel hump."  I was mortified.  Yes, I'm gaining the weight I need but no I do NOT want these things.  There must be a way to get ride of them.  NOPE.  You have to stop taking steroids.  Apparently I was just going to have to live with it...until May.  Only until May, right? 

This is exhausting.  If it's not one thing, it's another.  I think to myself that 2014 will be a better year.  It has to be...so let's begin the blog right there...my NEW life as a T1D with a crazy antibody problem and how I live with it!
[You may have noticed that you can click on some of the words/terms in this story.  I have provided you with links to information and/or definitions of the things I am talking about in the event that you would like more detail.  I have very obviously left most names (and quite a few details) out of this story but if you would like more information, please do not hesitate to contact me.  For more information on Diabetes terms, please click here: Diabetes Terms]