Current State of Mind

Turtle has been encouraging me to blog as a way to deal with my stress and anxiety.  I can't fathom how people can be so cold-hearted that they truly don't care when someone else's child has a disease that could kill them but can also be managed with modern medicine.  How do people look themselves in the mirror every day and not have even a smidge of guilt?  How can they truly believe that life should be be every man for himself?  That, because a child is born into poverty (or really just not born into privilege) that it's just too bad that they are sick.

• Sick people who expect everyone else to pay for them are the people who are causing all the problems with insurance.
• Why don't you pay for your healthcare/medicines/life-saving devices with the money you earn?
• Why should I have to give up my "hard-earned money" so that someone else can milk the system?
• The government is just out to take my money.
• It's a shame that people who NEED these social programs (meaning people they care about) can't access it when there are so many undeserving people who "abuse the system."
• Hasn't that person been sick/ill/dealing with that extreme pain for a long time?  Maybe it's time they just accept that's their life now and move on.  Get back to work.  Stop expecting other people to do for them.
• I'm able to push through my pain so anyone can.
• As long as we can afford care for our family, the system is working.
• *Those people* (of a different race, religion, gender, etc.) are just whining and want special attention.  I've never seen anyone actually be discriminated against.

I have seriously heard each of these comments.  I just don't get it.  I can't even respond because of the complete lack of understanding that we have societies because we are stronger together than we are alone.  The lack of basic compassion.  The assumption that they fully understand another person's perspective and situation which of course means that person is somehow lacking.

That's not to mention the people who wield God as a weapon and insist that anyone who has any misfortune in their lives are somehow complicit in their demise because they "aren't right with God."  Are you fucking kidding me?  And these people have managed to get into positions of power in our society.  What the hell?

I. Just. Can't.

Hell in a Handbasket

Hello friends.  I have a feeling I'm about to begin a cascade of political posts.  So much has been bottling up inside me and I've been mostly quiet with the exception of Facebook posts.  With VP Pence breaking today's Senate tie in confirming Betsy DeVos as Secretary of Education I'm done.  I can no longer stay quiet.  I WILL NOT BE QUIET.

I do not understand nor will I ever accept that access to healthcare is anything other than a fundamental right.  This country that deigns to call itself so "great" and yet allows its people to die because they can't afford to seek medical attention; doesn't at all support new parents raising the next generation with paid maternity/paternity leave; and now puts a person in charge of education who has no background in it, has never been to a public education facility or sent her own children to one, who has no idea how to measure student growth (or even that there was more than one way to do so!), and doesn't believe that neurotypical students should have to endure being educated with their atypical peers will NEVER be a GREAT country.  PERIOD.

Don't tell me that I have the right to move if I don't like the school system where I'm located.  Finding a comparable job, picking up and moving (especially with an autistic child who struggles with even the most basic changes in his routine), and having access to quality healthcare in the new location is NOT easy.  Yes, my husband could probably find a job in his field easily enough though I doubt it would allow us to stay together.  We depend so much on our support network.  When you have special needs kids, you have to.  We have two of them.

I've gotten really good at doing just the bare minimum and it takes all of the energy I have to do just that.  Hubby works his ass off like so many other men and women do.  He's a professional and his job doesn't allow for much time with his family.  We knew that when he started this path.  What we didn't know was that we'd end up with major health issues in addition to his grueling schedule.  It wasn't something that could have been foreseen.  Two years into pharmacy school, hubby developed Rheumatoid Arthritis.  His joints are incredibly painful and swell.  His feet and hands are the worst and his job requires standing all day and constantly opening and closing childproof bottles.  Try doing that for 10 or 12 hours a day, 5-6 days a week while your body screams at you to rest.  When he comes home, he has little choice but to listen to his body.  The medicine he takes to keep the RA from destroying his joints only helps the pain minimally and it compromises his immune system and can cause blood problems, heart failure, Multiple Sclerosis, seizures, and cancer.  But it's better than having his joints disintegrate in his 40's.  But it leaves little time for him to enjoy his family or even contribute to the household in any way other than his income.  Changing directions career-wise wasn't an option when he was diagnosed since he had already taken out expensive student loans for his education.  It's still not an option because of those student loans which can't even be discharged if we had to file for bankruptcy.

I have so much going through my head right now that I feel like I have verbal diarrhea as I sit here typing my thoughts as they come to me.  I'm going to take a break for now to go get Sunshine from the bus stop.

Until next time.
Willow

Return to Journaling

I've been needing to journal regularly again for a while.  So much has happenend in the last 8 months and I haven't felt that I've had time to journal but I have so much weight on my shoulders that I really need to get the words out of my head.  The Rainbow was diagnosed on July 9, 2016, with Type 1 Diabetes.  It has affected all of our lives so much in even the most minor ways.  Before her Dx, Sunshine's autism was always my number 1 priority.  Out of necessity, I've had to completely change my focus in life.  His special need makes life harder for him.  Hers can kill her very quickly.  Suddenly, an illness going through the house has now become a panic-inducing life or death situation.  

Type 1 Diabetes is a scary disorder.  I had no idea that it was an autoimmune disorder until The Rainbow developed it.  It's usually triggered by a traumatic life event or a virus.  In her case, I'm pretty sure it was triggered when she developed RSV at 3 months old. So many things just never added up and I always had a gut feeling that something was wrong with her health but I just couldn't put my finger on it....until I decided it was time for potty training boot camp.  

Ironically, the impetus for insisting she finally become potty trained was that I wanted her to start preschool this past fall.  Now that she is a T1D, finding a preschool to take her has been next to impossible.  In our county, we make too much money for her to qualify for public preschool at Sunshine's elementary school and finding a private preschool that has a nurse on staff to give her insulin shots is like the proverbial needle in a haystack. 

So back in June, I decided to push the potty issue.  She was doing really well and I noticed over the course of two days that Rainbow was drinking a lot of water - demanding it really - and was running to the bathroom every 20 minutes or so.  I didn't think much about it the first day.  The second day I began thinking it was odd how often she was going and actually started noting the time but I still passed it off as her just being enthusiastic about having mastered a new skill.  You go girl!  That second night was Friday night/Saturday morning.  Since I cosleep with her I'm in a position to help keep her from having nighttime accidents.  She got up three times that night to pee...and it wasn't a trickle. She had a full bladder each time.  Normally, she only woke up once or occasionally twice to pee so this was a red flag for me.  I was the first one awake Saturday morning and couldn't stop thinking about how much she was peeing.  I knew that excessive thirst and excessive urination were signs of diabetes and Rainbow has always had a really big pot belly and isn't slender in any way.  I began wondering if she could have developed diabetes so I sat on the living room couch and googled "diabetes symptoms in toddlers."   The Mayo Clinic's website was one of the first listed and since it's a legitimate source of medical information I decided to start there.  They had a list of symptoms of Type 1 Diabetes (at this point I'm still thinking she must have developed Type 2) and as I went down the list, I started checking off every symptom:

1. Increased thirst.  Check
2. Extreme hunger.  Check
3. Frequent urination.  Check.
4. Irritability and other mood changes.  Holy Crap, check!
5. Fatigue and weakness.  She had started taking naps again.  Check.
6. In females, vaginal yeast infection.  JACKPOT!

From almost the day she was born, Rainbow had suffered a yeast infection 6 out of 7 days a week.  I had brought it up repeatedly to her pediatrician, but was told that some girls are just more prone to them.  I had also noticed that she seemed to have problems whenever she ate or drank anything with even the slightest amount of dairy in it.  She would have a horrible bowel movement which would trigger an even worse yeast infection.  By now, she had already had one surgery because of a yeast infection that got infected with MRSA and spread to 4 lymph nodes.  When I read that yeast infections could be a symptom of diabetes in toddlers, I finally felt like this HAD to be the issue.  Of course, it was Saturday morning and Hubs had to go to work.  I went up to our room to wake him then followed him into the bathroom.  As he started the shower, I asked, "Do you think Rainbow could have diabetes?"  The look on his face said, "Are you completely crazy woman?" but he was smart enough to say, "I don't know.  Maybe you should take her to see her pediatrician."  I agreed to make an appointment for her on Monday and he left for work.  Throughout the day, I kept researching and was convinced I had found the answer to so many of my questions regarding her health.  

By 3:30 when Hubs came home from work, I was sitting on our bed talking to our housemate when he walked in and tossed a blood glucose meter at me.  I looked at it, then at him with a questioning look.  He said, "The only way to find out is to test her."  I couldn't bring myself to prick her finger with the lancet and asked him to do it.  By then, it was obvious he thought I was off my rocker and he was just doing this to shut me up (those are his words by the way).  He took her sugar and the meter read 478.  The first words out of both our mouths were, "Holy shit."  I felt vindicated and stayed calm because I really didn't understand the gravity of the situation.  Hubs freaked out.  He called the on call service for our pediatrician's office and as we waited for the call back, he convinced himself that the meter must be bad.  Within 5 minutes, we got a call back from the head pediatrician who assured Hubs that if the meter had a problem, it would show "ERROR" instead of a high reading.  He explained that we needed to take her to the ER immediately and that she would be admitted to the hospital.  I started packing an overnight bag for myself.  By the time he hung up the phone, I was ready.  Our housemate was prepared to care for Sunshine and I texted one of my other best friends to tell her what was happening.  
When we got to the ER, we were immediately taken back to a room.  The ER doc took her blood sugar and it came up 418.  That was the confirmation.  So, around 4:30 on July 9, 2016, Rainbow was officially diagnosed with Juvenile (Type 1) Diabetes and our lives changed forever.  We were notified that she would be transferred to another hospital for admitting and were given a choice of three hospitals: Children's D.C., Johns Hopkins, or University of Maryland in Baltimore.  At the time, Hubs had horrible insurance through a very small regional company based in Baltimore and the insurance was VERY strict about staying within network.  He tried calling the member number on the back of his insurance card and reached a recording saying that the office was closed and to call back Monday morning during normal business hours.  I had been to their website before and knew it was awful to navigate and here we only had our cell phones.  I wasn't getting clear reception and the ER doc was pushing us to send her to Childrens because our local hospital has an outpatient telemedicine option for followups.  I stepped out into the hallway to get better reception and desperately searched to see if any of the three hospitals were covered under this insurance plan.  God knows we couldn't afford a $50,000 hospital bill on our own.  Finally, I was able to find Johns Hopkins in their database so I rushed back into her room and told Hubs and the doctor that was where we were sending her.  The ER doc was pissed but grudgingly called the transport company to take her.   As it turns out, the doc had accused Hubs of not wanting what was best for his child because we wouldn't automatically allow them to transfer her to Childrens.  

As soon as I found out we would be heading to Baltimore, I texted our housemate asking her to start packing a bag for Hubs too.  I was still the calmer of the two of us, so I headed back to the house to get his bag and our other friend met him at the hospital with a bag of things to keep Rainbow busy.  I made it back just as the ambulance arrived.  I was still in a better mindset to drive 2.5 hours away and at this point it was around 9 p.m. so Hubs opted to ride with Rainbow in the ambulance and I followed in our car.  

We had to take a long route to Johns Hopkins (which is in downtown Baltimore in not the nicest section) due to a protest being held on the normal route.  Thankfully (or sadly) I know my way around JH as I've taken many friends there for various reasons. I parked in the garage and met Hubs and Rainbow in the pediatric ER where I was informed that they hadn't been notified of our impending arrival.   Thank goodness their ER is wonderful and quickly got us admitted.  They gave her her first dose of insulin and got her admitted and to a private room in the pediatric unit by 2 a.m. 

When you're first dropped into the world of T1D as parents, you are required to go through a crash course in managing diabetes.  Your child will not be discharged until both parents have passed the course.  No pressure.   There is a whole new vocabulary to learn and mathematical calculations to do every few hours.  You have to learn how to use a glucose meter and how to draw and inject insulin properly.  You need to know the signs of low blood sugar, what number indicates a low, and how to treat it depending on how low it is. You have to learn how and when to test ketones in the urine.   There's a special section on what to do when the diabetic is sick because they can end up in the hospital very quickly.  Frankly, it's terrifying and overwhelming and when you have a toddler who really doesn't understand what is happening to her it's horrible and you feel so inadequate as a parent.  It's worse than bringing home a newborn.  Finally, they send you home with a huge bag of supplies and phone numbers and tell you to call in that night with her numbers for the day.   That's the point at which I had my mental breakdown.  I wasn't ready to be her primary caregiver, calculating insulin doses. I hadn't even been able to calculate a single dose correctly compared with the nurses there.  How was I going to keep my child alive by myself?  I begged them to let us stay one more night so we did and we came home Tuesday.  

By then we had called the grandparents to let them know what was going on.  Hubs' parents were halfway across the country at a wedding the night she was diagnosed and were so freaked out, they left the reception early and took a red-eye flight home. They got Sunshine from our house and took him back to their house where they attempted to give him some semblance of "normal".  My parents were shocked and saddened to hear their little girl was looking at a lifetime of dealing with this disease.  

The day after we arrived home, Sunshine became sick and was diagnosed with hand, foot, & mouth disease.  Two days later, Rainbow contracted it.  That's pretty much how our lives go.  When it rains it pours.  Trial by fire.  When sorrows come, they come not single-spies, but in battalions.  About two weeks ago we experienced her first stomach bug since being diagnosed.  That wasn't fun.  We came really close to having to take her to the hospital.  T1D has completely taken over our lives.  Most days it's okay.  It's becoming second nature.  Then there are the days when I feel like I'll never get the hang of it.  It's a pain in the ass and requires so much preparation and forethought.  It really sucks on days when I have migraines.  

I've been experimenting with migraine preventatives for the last few months.  Topamax helped me lose a lot of weight which was great and it did help with the number of and severity of my migraines, but the side effects weren't worth it. Even on "good" days I felt like a zombie and Rainbow's diabetes control slipped.   I'm currently on Zonisamide which seems to be helping without the same side effects.  

It's getting late and I need to get to bed, but I promise to write more soon.