The Hound of Diabetes Hell

I really like my general practitioner. I only see her maybe twice a year, but I’m glad to have her. She is easy going in personality, she’ll joke and chit-chat with you. She is very well educated and knows her stuff. And she is thorough…and she takes the time to listen!

I have been getting monthly B12 shots because I am deficient. The nurse does them so I do not have to see my doctor and pay a co-pay. The doctor’s office usually schedules the appointments a month or two in advance, but this month they didn’t. Of course I called to inquire about this. The nurse on the line told me my doctor would like to see me to touch base since it has been six months since I started the shots.

OK, I set up the appointment.

Now, let me let you in on my anxiety and frustration about this office. The following rant does not in any way change how I feel about my general practitioner, it’s not her fault, really.

My general practitioner orders yearly labs for me. All the normal stuff, including A1c. Well, even though my endocrinologist orders A1c tests every three months (and the doctor’s share info on patients), there is still the yearly order from my general practitioner.  Whenever I get the lab done that is ordered by my GP, if it is above 7 her diabetes nurse calls me to discuss it.

She calls, and calls, and calls, and sends e-mails, and sends snail mails. And then when I go in to see my doctor, or get my B12 shot, or for any reason, the diabetes nurse will jump in to talk to me. I have told her that I do not want to or need to talk with anyone except my endocrinologist regarding my diabetes. I do not need or want any other hands in my diabetes pot! I work very closely with my endo on my diabetes care, we know what’s up, we need no help on this.

I’ve been a type 1 since 1987, I think I know all there is to know about my care. I’m not perfect, but I know what I am doing!  When people (anyone) hounds me about my diabetes care it crushes my spirit. I’m not non-compliant! I’m not stupid! I’m not untrustworthy! I know what I’m doing and I don’t need or want your help!

OK, so I got my labs done a few weeks ago and the nurse was hounding me again because my A1c went up significantly. I know why it went up and myself and my endo have been working on it. I have thyroid issues and this was making my BG’s impossible to get and keep down. As soon as I started thyroid meds (just after my labs were done) my BG’s plummeted to where they belong.

So, in the back of my mind I was thinking one of the reasons my GP wanted to see me was because of the A1c…

So I went into this appointment a bit aggravated. I kept going over my responses in my head if the diabetes nurse came in to talk to me.

Don’t blame me if I punch her….

The appointment was a normal visit. Weight first – It came up too high, as usual, but a good 12 lbs lower than I was expecting, so I was mildly happy with that. My blood pressure was 127/65. My temperature was normal.

The doctor came in and she was her normal sunny, pleasant self.

“Oh, I love your hair! The style is the same but you changed the color.When did you do that?”

“I just dyed it like two days ago.” I smiled.

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“I haven’t seen your husband in awhile, how is he doing?”

I was pleasantly surprised that she remembered my husband and that we’re a couple (who I go to most of his appointments with). This is one reason I love my GP so much. I told her he’s doing well.

She listened to my heart, looked in my ears, and felt my neck.

She asked me how I’ve been feeling, do I still have B12 deficiency symptoms? I told her the dizzy spells are gone and I feel great except that I am super sleepy all the time, I sleep an average of 15 hours a day… but I think that may be due to my thyroid issues.

We talked about my thyroid, and all my vitamin (B12, D, Iron) deficiencies… and, yes, we talked about my BG’s. She was very understanding about my A1c going up, she knew it was because of my thyroid issues.

“Well, your endo has thyroid labs ordered, so I’ll just add on some other tests as well. We’ll figure out the cause of your sleepiness and get it fixed.”

I’m so happy she is thorough.

After the visit, I got my B12 shot and then headed home.

It was a good, happy, visit after all.  🙂

 

 

 

We Have Such Complications to Show You

Thyroid issues are pretty common in type 1 diabetics (and type 2). They are both endocrine issues, they are hormone problems. Also, type 1 diabetes is an autoimmune disease, and some thyroid diseases are autoimmune as well. So there are a number of links between diabetes and thyroid issues.

I for one have apparently (not 100% clear, yet) have a thyroid issue that is a fairly common complication of diabetes. I have developed permanent (also not 100% sure, yet) hypothyroidism due to a bought of general thyroiditis.

Thyroiditis can present in many different ways depending on what is causing it. Mine went like this: Really bad pain from the shoulders to the top of the head (migraine), swollen lymph nodes in the neck, hyperthyroidism (overactive thyroid) -excessive sweating, weight loss, muscle weakness, tiredness, physical hunger, fast heart rate, anxiety, moodiness, goiter, insomnia, high BG -. Then the hyperthyroid turns into hypothyroid (under-active thyroid) – Always cold, weight gain, overwhelming sleepiness, depression, joint pain, dry skin, hair loss, acne, fuzzy thinking, high BG.

Usually after a few months the thyroid will return to normal function, but something like 5% of people end up stuck with permanent hypothyroidism.  Apparently I am one of the few…

What I mean by the type of thyroiditis I had being a complication of diabetes is that when the body’s blood-sugar is too high too often this causes widespread inflammation throughout the body, including the thyroid gland. When the thyroid gland is “abused” in this manner it can become very angry…or sick…or sad…or hurt…(pick whichever flowery word you’d like here) this is called thyroiditis. As I said, this is usually a temporary condition that resolves itself over several months…but it can become chronic, come and go; or you can develop permanent hypothyroidism from it.

So, for those type 1 (and type2) diabetics out there who have been constantly berated and warned of losing your legs, going blind, having heart attacks and such, due to your uncontrolled diabetes, just be aware that there’s even more out there to be afraid of. Diabetes has “such sights to show you…”

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Diabetes is a living horror flick that we are trapped in. But we can survive. I like to imagine myself as the heroine, the one who goes through all the shit, pain, suffering, and tragedy, but comes out of it by defeating the monsters, and stands bloody and sore, but alive and strong!

So try your best, OK? Please? It’s not easy, I know first hand, and diabetes will never be willing to cooperate. But give it your best fight and never stop trying.

One Little Pill

Well, it has been a week since I started on 75 mcg a day of Levothyroxine. I must point out that I started to feel a lessening of symptoms within the first 24 hours. I also should report that I suffered with nausea for the first 4 days and threw up once. But now that it has been a week I woke up this morning feeling really good.

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I just about feel human again.

For those of you who don’t know what I am talking about, I just started treatment for hypothyroidism.

The symptoms I had were:

Thinning hair (mild)

Acne (moderate)

Weight gain and difficulty losing (severe)

Sleepiness (severe)

Depression (moderate – severe)

Muscle and joint pain (mild)

Sensitivity to cold (mild – moderate)

Dry skin (mild)

Memory/concentration issues (moderate)

Stubborn high BG’s (severe)

I won’t bore you with the background story, but I am now on medication and it started working right away. I did have one side effect which was the nausea I mentioned. Apparently it was just a matter of my body getting used to the medication and changing hormone levels.

I’m sure my hair will thicken up again over time. The acne started to clear up immediately, it was shockingly fast! I hope I will lose some weight, but I’m not holding my breath on that one because a couple people I know who are on this medication said it didn’t help there. The sleepiness has lessened a lot, but I still feel overwhelmingly sleepy on a off during the day and I still sleep around 12 hours a night. The depression melted away and is now just about gone. I no longer have any muscle or joint pain. I still feel a bit more cold than I should, but it’s better. My skin is still dry. My brain is no longer foggy, it’s like the sun finally came up! My BG’s are better but still high, but I think it’s just now due to me being bad about my diabetes care this past week.

I’m feeling good. 🙂

I see my endo in a few days and we’ll see what she has to say. I get my thyroid labs at the beginning of April so we’ll see then how well the Levo is working.

Thyroid Update

I haven’t been posting as often lately because…well, because of a few reasons I guess. I think I’m ready to admit I’ve been burnt out. Not just diabetic burnout, but all my health problems burnout. I’m tired of it all. I know there is no end in sight for my health issues, there is no healthy me hiding inside this body. The diseases I have are not curable and I am stuck with this shit forever.

I am standing on the tightrope between giving up and continuing to fight. It’s tough because I am not the type who ever gives up…but I just don’t have any energy left in me.

I am depressed. I’m on a high dose of depression meds and going to therapy. But I am still depressed.

Very depressed.

Anyway, this post is supposed to be an update on my thyroid issues. I haven’t spoken much about it because I’ve been in limbo for the past few months regarding this issue.

And I still don’t have an official diagnosis (Grave’s? Hashimoto’s? Something else?)…

Let me start at what I believe is the beginning for all of you who don’t know the whole story.

November 2014: I suddenly lose a significant amount of weight even though I’ve changed nothing in my diet or activity. I also begin to have hot flashes and sweat a lot. I really don’t think anything of it, probably because I view the weight loss as a good thing.

January 2015: I notice I have gained all the weight back.

April 2015: I am concerned that I am still gaining weight even though I am doing everything right to be losing. I am beginning to notice other strange symptoms as well: My hair is falling out (only noticeable to me), I am tired all the time, I am cold all the time (although I still have hot flashes as well). I do not connect the symptoms at this time because I have never had thyroid issues and don’t know anything about the thyroid.  My thyroid labs (part of normal yearly labs) at this time come back normal.

June 2015: I still have all the symptoms. Other people have suggested thyroid issues so I talk to my endo about it. She runs a full thyroid panel and it comes back normal so she is not concerned…and neither am I.

February 2016: I have continued to have all the symptoms, although they have fluctuated between severities, and now have new insurance and a new endo. I tell her all about my ongoing issues with weight gain and not being able to lose even though I live healthy enough that I should be smaller. I also let her know about my constant fatigue. She reviews my labs and sees that my thyroid results are all normal so suggests my issues are being caused by something else.

April 2016: I am so depressed and unable to function adequately that my endo refers me to a psychologist.

August 2016: The past month I have been feeling good. I have lost some weight and have had energy up the wazoo. I am having overheating problems and sweating like mad, though, but I contribute that to the summer heat and my activity level. I have just had my labs drawn, though, and my endo sends me an e-mail saying my thyroid is hyperactive, how do I feel?, and let’s keep an eye on it. She orders a thyroid scan and uptake test.

September 2016: I am in severe pain from my hair roots down to my shoulders, I have a swollen lymph node on the left side of my neck. I am also weak, tired, sweating profusely, have a racing heartbeat and shortness of breath, continue to lose weight, have trouble swallowing, BG’s are stubbornly high, and am always physically hungry. I have several doctors trying to figure out what’s up and am put on antibiotics and given a CT scan of my neck which shows nothing significant. I finally do the thyroid scan and uptake and the results come back inconclusive because of the CT scan (with contrast) I had earlier in the month.

October 2016: The swelling and pain go away, but all of the other symptoms remain severe. Thyroid labs come back still hyper. I can not function and feel like I am going to die. At the end of the month I start to feel a goiter on my thyroid.

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November 2016: My endo is ready to put me on Methimazole for hyperthyroidism, but then spontaneously my symptoms all just disappear and I feel fine. At the end of the month my thyroid tests come back now hypo (low function). Endo wants to keep an eye on it, she thinks maybe (and hopefully) my issue is simply general thyroiditis and the problem will probably resolve itself.

February 2017: We have been keeping an eye on my thyroid function and it has stayed stubbornly low. I have many symptoms of hypothyroidism still : weight gain and inability to lose, thinning hair (not severe), acne, constant sleepiness, depression, sensitivity to cold, muscle and joint pain, stubborn high BG’s, memory issues. My endo has now decided my hypothyroidism is not going to go away on its own and has put in a prescription for thyroid replacement hormone pills.

I love my endo, she has been my doctor for my type 1 diabetes on and off for almost 27 years and has never let me down or caused me to question her competence. But I can’t shake the feeling that she has dropped the ball on this issue a bit. I know thyroid illnesses can be difficult to diagnose because they all have the same symptoms, etc. I intend to talk to her in a couple of weeks and remind her of all my issues going all the way back to 2014..especially that my thyroid labs kept coming back normal at first. Maybe this will help her to put things in better perspective and give me a definitive diagnosis?

I don’t know, I just need concrete answers.

 

Being Valued

It’s funny how you can be feeling one way for a while and even be convinced this bad feeling just might last forever. Then a perfect stranger comes into your path and changes everything with just one short conversation.

Today this happened to me.

I went in for my regular monthly B12 injection. When I was called in I made note that the regular nurse who does my shot was not there, a new nurse had taken her place.

This new nurse liked to talk.

“You are diabetic?”

“Yes, type I.”

She prepared the injection as we chatted.

“When were you diagnosed?”

“1987.”

“Oh, wow.” She responded while she injected the B12.

The injection was now done and I was ready to get up and go. I’m not much for chit-chat, and most nurses are very busy and rushed. But she kept talking.

“How is your diet? What do you eat and how do you prepare your food?”

I was a bit confused by her wanting to discuss my diabetes and diet, but I am always willing to talk to those who are truly curious and want to understand. I had a feeling she was one of these type and wasn’t being judgemental or anything negative.

“I try to stick to as low carb a diet as possible. I’m far from perfect, but I try.”

“What do you eat? Mostly vegetables?”

“A lot of veggies, and protein.”

“Protein, like meat? What kinds of meat?”

“A lot of chicken, and I like fish.”

“I ask because I was recently diagnosed with diabetes. I struggle so much with my diet.”

“It’s really tough. There’s a really good book called Dr. Bernstein’s Diabetes Solution. He teaches all about type 1 and type 2 diabetes and teaches how to eat low carb to control blood sugar.”

“Oh!” She seemed to take mental note of the book. “It’s really hard, I do good during the week, but when the weekend comes, gah!”

“Yeah, it’s difficult, but as long as you try and don’t give up, over time you’ll get used to it. It’s a lot of will power. Just keep trying.” I smiled.

The conversation came to an end and we went our separate ways. As I walked out of the building I thought of how good it feels to be valued for information and suggestions. I could have talked all day with her and given her a treasure trove of education and tips, but, alas, there’s never enough time.

 

🙂

Thoughts in a Day of a Diabetic

“When you think all is forsaken
Listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness can show you the light”

I often wonder if the way I physically feel throughout the day. Or just certain things I feel for whatever reason (if I even know the reason) are ever felt by non-diabetics.

Do I “feel” normal?…

I’m such a slave to diabetes. Never free to be me…

Other than physical, I also fluctuate in emotional and psychological thoughts and feelings.  There’s no question that many more people than will admit to it suffer the same way.

I’m not the only person who self-loathes, who feels broken.

Would I think differently of myself if I had not become a type 1 diabetic?

We all change in many ways as we grow older, some grow and become smarter, better, stronger.  Some get stuck in the past, dwell on the wrong things, and end up broken and beaten.

But the good thing is, we can keep changing. We can improve no matter what.

I may be “sick” but that doesn’t mean I have to hate it.

But how do I stop hating it? How can I be OK with something that’s trying to kill me?

Diabetes drives me insane…

It’s taken over my body. It’s killing me. I’m afraid. I’m pissed. I’m tired…

I don’t know how much longer I can keep mustering strength I used up years ago.

All of this has made my anxiety so bad that I have become agoraphobic. I rarely leave my house anymore.

Diabetes has beaten me. It hurts on so many levels. Diabetes is such a bitch!

Diabetes needs to die. Just go away. Fuck off! Leave me be!

I suppose I can keep trying. I’ll beat you one day, diabetes!

Disturbed – Down With The Sickness

 

And then there’s the other side of thought:

How would we know goodness without evil?

How would we know health without sickness?

How would we know love without hate?

How could we be grateful or happy if first we did not experience hardship and sadness?

How can we be strong if we don’t understand what it is to be weak?

How can we learn perseverance if we do not experience failure?

Do not let fear overtake you; do not let it make you turn away from the joy you could win with hard work.

“When you think all is forsaken
Listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness can show you the light”

Yes, diabetes is a horrible bastard. But don’t look at the evil it brings, but the lessons you can take from it. Only you can overcome your disease, only you can control it. Keep trying.

Be strong. It is within our darkest hours that we find our energy, our perseverance, our resolve.

Disturbed -The Light

Anxiety vs. Anxiety

I was settling into my chosen as- comfortably- far- away- from -the- world- as- I- can- get- in- public booth at a popular fast food restaurant. I had just begun to stuff my fries (I know, potatoes are the worst food on earth for a diabetic) into my face-hole when suddenly to my left the worst thing that could happen to a person with social anxiety happened.

“Can I sit with you?” The voice came strong and fast.

I was caught off guard. Was this stranger speaking to me? OMG, did she just say what I think she said? The restaurant had like ten quadrillion empty tables, why sit with me? I was confused and instantly flooded with anxiety. I didn’t have time to think, I just reacted.

I smiled politely and with a polite tone the word just came out of my mouth as if I just opened the gate and it fell out like the awkward dunce I feel like when I have to talk to anyone.

“Why?”

“I don’t like to sit alone. I feel weird eating alone.” She replied in that same fast, clipped tone.

Still stunned and profoundly uncomfortable, my childhood training and nature of compassion took over. I don’t even think I was in any control of my mouth and voice.

“Sure, go ahead.” I even nodded and motioned to the seat across from me! Gah!!!

…The once gloriously empty seat across from me was now sullied by the warm booty of a strange woman.

And she’s looking at me!!!!

OMG! Save me! I can’t do this, I can’t handle this thing!…this….socializing!

I smiled nervously. My eyes darted every which way but at her. I looked out the window…she looked out the window. I looked over to the service counter…she looked over to the service counter.

I couldn’t bring myself to look at her and she seemed to be a bit confused by this. Then…

WTF?! She’s taking her shoes off!

And then…

“I’m going to take some of your fries.” She said.

Again she spoke fast; and this time she kind of mumbled so I didn’t catch what she had said right away.

I smiled like an idiot.

“Just kidding, you know I don’t like fries.” She said with a slight giggle.

Is she talking to me?

Then she opened her food bag and pulled out a cheeseburger. Next, she went through her pockets carefully pulling out each item and laying it on the table in front of her.

A Raiders game ticket, old and kind of crumpled. She smoothed it out.

A credit card shaped card with the Raiders logo on the front and a game calendar printed on the back.

“Nice.” I said, not having the slightest idea of how to react or of what was going on.

Two one dollar bills and two quarters.

And lastly a small white piece of paper. I couldn’t tell exactly what it was.

Then she touched each item with her index finger, stacked them all carefully, and then put each item back exactly where it had come from in her pockets.

All the while she was mumbling, rocking back and forth a bit, and sometimes looking around and nodding her head.

Is this woman on drugs?!

Then she unwrapped her cheeseburger, flattened out the wrapper and then promptly shoved the entire burger in her mouth.

She smiled, now avoiding my eyes.

She looked like a squirrel with a mouthful of nuts.

I nervously looked around as if someone was going to magically come rescue me. Instead I said the first thing that came to my mind.

“It’s kind of busy in here today.” This, of course, couldn’t have been farther from the truth. But I suppose I thought it because my social anxiety was exploding through the roof at this moment.

GET ME OUT OF HERE!!!

She finished her burger and reached into her bag and pulled out another.

Oh, God…

Then she repeated the entire scenario from the top. Remove items from pockets, set on table, touch each one with finger, stack, put back in pockets.

Unwrap burger, flatten out wrapper, stuff entire burger in mouth.

I concentrated on finishing my fries…and sent my hubby a short text about the current happenings in my whereabouts.

“Change seats.” He responded.

Oh, if it were only that easy for an anxiety riddled person! The thoughts going through my mind as I thought of getting up and changing seats mostly consisted of this woman taking the action as some kind of betrayal and pulling out a shiv and promptly gutting me.

I stayed…profoundly uncomfortable…jumble-minded…feeling very awkward…and a bit scared.

As she finished chewing the last of her burger – somehow managing not to choke on it- she gathered up her things and nodded at me as she smiled and rolled her eyes.

She left.

As I watched her get on the bus just outside I felt a profound sense of relief.

What the heck was all that about?!

Then it hit me like a ton of bricks…and my relief transformed into guilt.

Thinking back over what just happened I realized that she wasn’t some psycho druggy, or crazy person who could attack me at any moment and is not in touch with reality.

The poor girl just wanted to sit with someone because she is fully aware that she has OCD, talks to herself…and has some…quirks…

“I don’t like to sit alone. I feel weird eating alone.”

She just wanted to look like she was talking to someone, hanging with a friend. Instead of being stared at and judged poorly for talking to herself and being a ‘weirdo’.

I felt so bad. My social awkwardness and anxiety probably made her think just what I felt.

Afraid, uncomfortable, awkward, confused…

I didn’t truly feel these things toward her…not most of them at least…I felt them because I just can’t function well in face-to-face social situations. The  social anxiety takes control of me, just like her OCD anxiety controls her.

I truly hope I didn’t ruin her day.

See, people?! This is exactly why I don’t leave my house!