Diabetes Blog Week 2015: Day TWO – Privacy…

Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

This is a hard one for me.  I had 2 aunts on my dad’s side of the family that had type 1 diabetes.  They both died very young from the diabetes – one at 53, and the other in her 40s.  Losing those 2 people, the only 2 other people in my family with diabetes was SO hard.  Honestly, I basically freaked out!!  I am much better than I was in the heat of the moment years ago, but I do still have my days where I get very stressed, anxious, and downright scared about what their deaths might mean for my future.

People will respond with platitudes like “Oh, but the technology is SO much better now”.  “They know so much more now than they did when Chris and Judy were diagnosed.”  and “But you take care of yourself!”

I know the technology is better.  I know that there is so much more knowledge about diabetes than when Chris and Judy were diagnosed.  I know that I take care of myself.  I also know though that genetics play a role in what our futures hold.  I also know that the only thing for 100% certain that causes complications from diabetes… is having diabetes.

Why do I keep this private?  Why do I choose to not talk about this more with my family, the DOC, friends, my medical team?  I’m just plain sick of the “don’t worry” kinds of responses I get.  I don’t want to scare other people in the DOC.  When I bring up Judy and Chris with some of my family, they give me this look… this look like a ‘poor you’ kind of look, like I’m worried about you, I pity you, etc.  I don’t want people worrying about me.  I don’t want to be a Debbie Downer.  I don’t want to feel the way I do – scared, worried, nervous, stressed about my future.

Honestly, I have had moments where I wonder if it is selfish of me to want to get married and have kids – if my future ends up like Chris and Judy’s did, and ends young and abruptly, is it really fair that I put others through that?

So there’s the dark and twisty skeleton in my diabetes closet.  There’s the very private side of me that I don’t let anyone see, ever.  It feels good to get it out, and it feels so much safer to get it all out there to an inanimate object rather than a person.  At work and in my comfort zone, I’m a very open person, but this is a part of me that I don’t like to make public.

Diabetes Blog Week 2015 Day ONE: “I Can…”

In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

Because I have grown up as a patient, I can better relate to my patients working as a nurse.

I can say to the patients that I care for who have diabetes that I have given myself multiple shots a day and have poked my finger countless times over my 2 decades of living with diabetes.

I can understand my disease on a different level because I am a nurse.

I can joke about being the bionic woman with all my diabetes technology.

I can see myself and my patients as people, and not just the disease or condition that they have.

I can connect with patients on a very intimate level since some of what they are going through I have been through myself.

I can be a better nurse because of living with diabetes than if I did not have diabetes as a part of my life.

Ultrasound Results, GI issues…

Apparently today is #dblogcheck day where we all (in the DOC – Diabetes Online Community) are encouraged to “check in” with the blogs we read.  I often don’t post comments because I feel like unless I have some kind of insight, something useful to add, question, etc. it seems silly to just comment saying “Hi!” or “Nice post”.  But today, I’m commenting on every diabetes blog I read, and I encourage you all to do the same, even if it is just a “hi” or “#dblogcheck”.  I think this is a great idea so you feel like your blog actually is reaching people even if they never comment.

I got a message on my MyChart account this morning from my endocrinologist.  She said that the results of my thyroid ultrasound were entirely normal, and that it actually has not grown appreciably in size like she was guesstimating based on her feeling my thyroid.

Interesting… still no answers, but also no additional faulty equipment in my body.

I also had an appointment with my gastroenterologist yesterday morning.  I have been having GI issues fairly regularly again since August.  We still don’t know why.  Since about 2008 or 2009 I have had intermittent GI issues (I’ll spare you the details) and there have been a few theories about what’s causing them.  I even had an actual diagnosis at one point, but then was essentially un-diagnosed with that condition.  We don’t know what’s going on.  The only abnormal results in my blood work showed the CRP (a non-specific marker for inflammation in the body) was elevated a bit, yet the more GI tract specific inflammation marker was normal.  We’re going to monkey around a bit with some medications to help, and if things do not improve, get worse, or change, more tests.  Celiac, Gastroparesis, Small intestinal bacterial overgrowth, and autonomic neuropathy have all been wither definitively ruled out, or deemed highly unlikely.  The possible reasons that still remain include Crohn’s, Colitis (both of those aren’t very likely, but still possible), Inflammatory bowel disease, an issue with my small intestines, some kind of undiscovered food sensitivity, or my IUD that I had placed back in August just before the symptoms began again.

On a happier note, the weather here in Wisconsin is FINALLY warming up!  This week is supposed to be mainly in the 50s!  WOO!  I am thinking of buying a used road bike with some of my tax refund money and signing up for an ADA or JDRF ride event.  I still want to do something special in my 20th year living with type 1 diabetes.  I had been hoping to go to the Children With Diabetes Friends For Life Conference at Disney in July, but I can’t get the vacation days.  I had also applied for a scholarship for the Diabetes Unconference in Las Vegas, but didn’t get a scholarship for that.  Those were 2 of the big ideas of how to commemorate my 20th year.  The last idea I had was to do either the ADA Tour de Cure in Madison in May, or the JDRF Ride to Cure in LaCrosse in August.

If anyone has any other ideas about the GI issues or something I can do to commemorate my 20 years with diabetes, please leave a comment.

Ultrasound

I had my thyroid ultrasound last week.  No results yet and I’m anxiously waiting to hear what my doctor will say about my pushing to try low dose thyroid hormone to halt the growth of my thyroid.

So, the ultrasound.  You lay on an exam table with a towel under your shoulder to hyper-extend your neck back to allow for better visualization of your thyroid and all the other structures and vessels in your neck.  Then, they glob on a bunch of (nicely warmed) ultrasound gel, and use a typical ultrasound wand to check everything out.  No pain, but I have to say, the parts where the ultrasound tech had to push down to see certain structures – kind of uncomfortable, and not really in the hmm, this hurts kind of way, but in the wow – I bet this is what it feels like to get strangled, only MUCH MUCH worse! kind of way.  No pain, but the pressure on my neck, windpipe, etc. for her to be able to see everything she needed to see was disconcerting.  It wasn’t a bad experience by any means, and not something I’d refuse to have done again because it was so uncomfortable, but yeah -the pressure on the neck thing was definitely new and not very fun!

So, now it’s Saturday, and I sent a MyChart message on Wednesday (the ultrasound tech said if I hadn’t heard from my clinic by Wednesday or Thursday to give them a call or shoot them a message asking for my results) asking about if the results were in, what they were, and what the plan was.  No word back, other than a message from the nurse saying “I’ve passed your message along to Dr. M”.

GREAT!  Now we wait through the weekend.  In other news, dinner with the parents tonight in Milwaukee, and then back to work Sunday, Monday (with a GI doctor appt. Monday morning), Tuesday… then off Wednesday and Thursday, and back for working the weekend Friday and Saturday.

Have I mentioned that with matters of my health, lab results, etc. that I HATE waiting!

Thyroid

I had a great appointment with my endocrinologist yesterday.  My A1C is higher than it’s been in about a decade, but there was NO judgement.  I knew my A1C was not where I wanted or needed it to be, and Dr. M and her resident were AWESOME!  There was no questioning, no judgement, no glares, no anything negative.  It was all positive – supportive, helpful, reassuring, kind, understanding… Dr. M takes such an approach of – I want to help you make this better.  What can we do to make this better?  Do you know why things haven’t been going well?  I’m here to help and support you and help you get back on track.  I have missed that supportive environment from a doctor for the past couple years, and it’s so great to be back.

Diabetes is such an individual disease, both from one person to the next, but also from one day to the next.  I don’t understand how an endocrinologist or CDE can help you figure things out with diabetes management and blood sugars if they don’t take the time to try to get to know the PERSON living day to day with the disease.  That’s what was missing from my endocrinologist in Indiana.  I felt like she only ever saw the numbers, and never saw ME.

The other big topic for the appointment was my thyroid.  It’s been about 4 years since I saw Dr. M last, and she previously estimated my enlarged thyroid at about 30g give or take, soft, generally symmetrical.  Now, my thyroid is estimated at about 50g!  It has almost doubled in size, yet my thyroid blood levels are still in the normal range.  I am getting thyroid antibodies drawn, and having a thyroid ultrasound in a week to see if we can figure things out.  For the past probably 5 years, I have had a random group of symptoms affecting multiple body systems that no one can find an explanation for.  Amazingly, thyroid issues would account for many if not all of those symptoms.  Here’s the kicker though: if my antibodies come back positive, Dr. M will start me on thyroid hormone to try to shrink the goiter and see if that helps with my symptoms.  If the antibodies come back negative, no treatment since my TSH and T4 are as always, within normal limits.  I guess I’m frustrated that with my thyroid basically doubling in size over 4 years, 1 blood test is determining if something can be done about it or not.  As crazy as it sounds, I’m honestly praying the antibody test comes back positive.  No, I don’t want another faulty / broken piece of equipment in my body, but I DO want an answer, and this would be about the simplest answer, and easiest treatment possible.

What do I do if the antibody test comes back negative?  Is there anything else that can be done about my crazy growing thyroid?  From what I understand, thyroids only enlarge if there’s some kind of neoplastic / cancer issue / cyst / etc. going on OR if it’s having to grow to keep up with producing the right amount of thyroid hormone to keep your body functioning as it should.  So am I just going to have a thyroid that eventually grows massively large just to keep up with the demand?  Thyroid hormone will shrink a goiter because your thyroid doesn’t have to work as hard to produce all the necessary hormone on its own – it’s essentially getting some help / back up from the medication.

Thyroid people… Goiter people… Thoughts, things I should think about, look into, questions to ask, etc.?  Thanks!

Endocrinologist

After moving back to Madison in October, I was so excited to be accepted back into the now closed to new patients practice of the endocrinologist I saw here for about 6 years when I was living in the area previously.  I have my first appointment back with her this afternoon.

In Indiana, I never really found an endocrinologist that I felt like I clicked with.  The lady there that I saw for the couple years I was living there I felt like always was judging me, and never really tried to get to know me as a person.  With something like diabetes that is such an individual disease, how can you know how to help someone if you don’t at least try to know SOMETHING about them as a person!?  My diabetes care there was not what I was hoping for, I didn’t go to the endo as often as I should have because of how I felt with this doctor, and now it’s time to get back on track.

The endo here in Madison, well, and her whole team – I feel like they cared about me as a person, patient, and diabetic.  They understood my stresses and anxiety about losing my 2 type 1 aunts at very young ages.  I am nervous to be going back to the endocrinologist because my A1C right now is not great, but I’m so excited to be back in a supportive environment in a place where I feel like I’m cared for and about.

This appointment also comes at a very good time because I have been having some issues lately with some obnoxiously persistent low blood sugars that end up resulting in massive spikes later on… more about that later.  I’m hoping Dr. M will have some insights about that, what could be causing them, how to fix them, etc.

School, etc.

The hospital that I am working at now in Madison, WI has an academic partnership with an Illinois school for a fully online RN to BS completion program.  Instead of the typical price per credit hour, they have a deal for us that is one set price per class, no matter how many credit hours it is.

I had planning on going for an RN to MSN program (either family nurse practitioner and then getting the post-master’s Women’s Health NP certificate or straight up Women’s Health Nurse Practitioner program) to save time and money, but in the long run, I will save more money if I take advantage of the deal with my current employer and this school, and then do a completely separate MSN, DNP, or PA program.

Physician’s Assistant programs are tempting in that they do not have a set specialty that they are graduating with a degree in, so it’s more open for if I were to ever want to change my focus sometime during my career.  Also, PAs can help in operating rooms during surgeries.  This sounds pretty good to me.

BUT… as a nurse practitioner, I would be able to practice independently, and not need a physician to sign off on my work, prescriptions, etc. AND… I’d still be a nurse.  The one hang-up I’m having about nurse practitioner programs, is that they’re specialized – internal medicine, family practice, pediatrics, women’s health, neonatal, so if I were to want to change my focus during my career, I’d likely have to go back for more education and get additional certifications to change my care area.

I’m not yet sure what I will end up doing after the Bachelor’s completion program, I have many options.  The world of nurse practitioners is in the middle of some great change where many, of not most of all NP programs are changing from Master’s to DNP (Doctor of Nursing Practice) so there’s more unknown right now in that field.

I have thought about a more general course of study for an NP degree, like family practice or internal medicine, but then if I want to do only women’s health, the post-master’s certificate programs I have seen are all at least 1 academic year long!

So many things to think about… I am hoping to be able to pursue that dream that I had a while ago where I was a women’s health practitioner (in the dream I was an NP, but either NP or PA) and also had my diabetes educator certification so I could work with families during pregnancies involving diabetes, and general women’s health as well.

If anyone has any thoughts about graduate education – NP, PA, MSN, DNP, etc. please leave me a comment.  I’m feeling very lost as to what kind of program I should pursue after I get my Bachelor’s, so any insights would be appreciated.

Diabetes-Related Sadness

So I am back in Madison, WI now, closer to family.  Have a new job here that’s going pretty well so far.  BUT – when it rains, it pours.  After I started this job here, I landed an interview for a DIABETES job here in town.  Now I would never leave the job I just started, even for the diabetes job, but I figured since both were part time, I’d apply, and see if I could make both work.

I got an interview, I thought the interview went REALLY well, but no word yet and it’s been 2 weeks since the interview.  I’m pretty sure I didn’t get the job.  I am so sad!

My current career dream is to become a CDE, AND either a Physician’s Assistant, or Nurse Practitioner in Women’s Health, and work with women with diabetes through conception, pregnancy, post-partum, etc.  Not sure how that’s ever going to happen, but as of now it’s the ultimate goal.

I also applied recently for a scholarship to the Diabetes Unconference.  I did not get selected for a scholarship so I can’t afford to go to that… MAJOR bummer!

I plan on applying for a Children with Diabetes Friends for Life Conference scholarship when those are open, so maybe that will work out.

For now though, there’s a bunch of bummer stuff going on in my D world.

#DSMA tonight was good, talking about burn-out both with diabetes itself, and with social media / diabetes social media.  Well, I’m kind of depressed about the diabetes things that haven’t gone my way recently.  I wouldn’t say it’s burn-out, but more frustration and depression about wanting to do more, be more, live more, and not being able to.

More later.  I’m going to try to start getting back into my blog as an outlet, and especially now that I’ve become more active with the weekly #DSMA chats.

“Dealing with Diabetes Burnout” by Ginger Vieira

I started reading this book by the wonderful Ginger Vieira earlier today.  I’m only on page 31, but I’m already sitting here in tears.  I am not a person who asks for help – never have been.  I have always been one who does everything her self, and hates to feel like I can’t do what I need to on my own.

I feel so alone.  I feel alone living in Indiana far from all my friends and family, I feel alone in the diabetes world, I feel alone.  I lost 2 aunts to diabetes far too young.  One was in her 40s, and the other in her early 50s.  Because of that and being the only diabetic left in the family, I have a hard time talking to anyone in my family about diabetes.  My friends here in Indiana are mainly work friends, and I don’t want to bring that drama to my work friends.

I’m scared.  Having those 2 aunts die so young of diabetes or diabetes-related things scares the ever living heck out of me.  People reply with their annoying platitudes such as “the technology is so much better now”; “but you take care of yourself”, etc.  I don’t care – it still scares me to think of what the future may or may not hold for me.

I need someone to talk to, but I can’t talk to someone I may be seeing in real life.  Does that make sense?  I need to connect with some people who “get it” but that I don’t have to fear judgement from or fear seeing them in public.  I need a bit of anonymity with my emotions, fears, etc.  Kind of odd that I’m posting this all on here, but I guess I need to feel like I’m being heard by people who understand, without having to see and REALLY connect with them.  Really connecting is hard.

So my dream is to be a CDE.  If I have these moments where I feel like I emotionally and mentally can’t handle my own diabetes, how will I be able to help other people handle their diabetes?  I feel like I NEED to be a CDE, but SHOULD I be one?

Update

So it’s been almost a year since I last wrote a post on here.  Unfortunately, nothing much has changed.  I am still living in Indiana, working on the mother / baby unit at a local hospital.

I have had a couple interviews for endocrine clinic / office / diabetes jobs, but nothing played out.

One of the interviews went super well, but they were looking for more an endocrine nurse for hormone therapies, growth hormones, testosterone injections than for a diabetes nurse, and the manager felt that I wouldn’t be happy in that position not being very involved with diabetes care – BOO!

I have been getting more involved with a local Adults with Type 1 group here in Indy, and that’s great, but I’m still having a hard time not feeling so defeated about NOTHING happening with the diabetes jobs thing.

I have started another blog that essentially will be my “Part-Time Caregivers’ Guide to Kids with Type 1 Diabetes”.  This way, I get it OUT THERE, it’s FREE, and there’s the potential for an interactive element to it where people can comment, ask questions, etc. instead of something printed on paper where you can’t ask questions and get a response back.

This blog is in its infancy right now, and hopefully in the next week or so I will really get it going.  For now, it’s an intro. and not much more since most of the files I need to upload are on my computer at home, and I’m not there at the moment.

Anyway, the new blog is: http://www.caregiversguidetotype1diabetes.wordpress.com

Please feel free to share this with people you know that night have a use for it, and as always, comments, recommendations, questions, edits are very welcome.

Stay tuned… more to come!