Search

malinalove

PCP Refuses To Treat Me Because I Have Too Many Health Problems

image

I’m not sure what to call this. I’m not sure how to begin it. I’m in a new area, I was assigned a new PCP; I go to my new patient appointment today and the Dr tells me he refuses to treat me because I have too many health problems. He continued to judge and berate me for being so young with so many health concerns.

This was supposed to be my new found hope towards better health and longevity.  I was stoked. Getting health insurance in my area was the best thing since sliced bread for me! It meant that I could get all necessary referrals to endocrinologists and such.  Then on to… Wait for it… CGM, and pump; all the T1D cool kids tech that helps us live happier, longer lives.

But this Dr refused to even refill my insulin. He said I can’t handle it. You can’t handle it? How do you think I feel? The nurse had to talk him into it and he said ok, just this once.

I shed a tear or two in that Dr office while he’s flailing his arms up in the air. He then says oh great now you have depression on top of it all.

I have never felt more defeated in my life.  I have never felt more betrayed.  This man was supposed to take my life in his medical hands and carry me through.  Nope. No chance here. 

This moment demands me to turn deep inside and find a core strength from somewhere even if I don’t know where. It demands I can’t give up. It demands I can’t buy it.  It demands I know the truth.  I am not too much to handle.  I might be overwhelming to a new primary care provider but I’m not garbage to be thrown out with yesterday’s trash. I felt like I was in a 3rd world country today.  Then thought I probably would have gotten a lot better care in Mexico.  And a hug. 

On the other hand he did refer me out to a shit load of other Drs that he said could help me. But now I have to wait.

This office didn’t even stop to check my blood sugar.

The Cure Party

th

I never once in my life had any hope for a cure with the exception of the islet cell transplants they were doing back in my younger days. Those failed. I had one quick glimmer of hope and then none. Its not that I am pessimistic. Just a realist I guess.  Insulin was found 94 years ago, come on now. I am not trying to rain on anyone’s parade or anything, seriously.  And I am not trying to justify why I don’t believe or don’t have hope.  But with the advent of @verylightnosuga’s constant mention of it, I came to realize WHY NOT?!

Why not dream and hope and imagine and believe! – even if it will never happen in my lifetime or ever?  Why not throw those imaginary parties in my mind and join the fun wondering WHAT WOULD WE DO?  Can you imagine all of #DOC getting together in one place?  What country would we host it in?  On what island?  What cruise ship? Can you imagine all the cupcakes and champagne and streamers and music? Oh yes, Nick Jonas would sing for us for sure. Ryan Reed would give the toast. Get the picture?!

Then I wondered, what if it really does happen?!

cupcakes

Chasing The Beast & Never Winning

imagesEvery 2 hours I check my sugar. Every 2 hours its too high.

Every time I eat I count the carbs, calculatethe ratio, inject.

2 hours later. Too damn high. What did i do wrong?  Inject again.

Maybe my ratio is too low. Maybe I need to increaseit. So on my own I do. I inject an extra unit or 2 the next time. I check it 2 hours later. Too high. Inject again.  Oh I forgot the diet Gatorade that has a few carbs in it. 7 per serving. I only had a sip. Maybe that was it? Im not sure.

I do what I did at lunch for dinner. Sugar crash. Too damn low. What the hell?!

I take my Lantus for the night. Sugar crash at 4 am.

I wake up in the morning. Its a little too high but below 200. Ok but not good enough.

The roller-coaster all day every day all night every night.

Chasing the numbers.

Just for a decent A1C reading. Just so the Drs will be proud. Just so the Endo doesnt look at us sideways. Just so we dont have to hear that we are being non-compliant. Just so we dont get the bloody hell of complications. Just so we dont feel miserable. Just so we dont feel like a failure.

This isnt my fault. Yet every 2 hours I feel like it is. I didnt ask for this but I am in charge.

Right?! Arent I?!

I Dont Want Anyone To Know

My sister found me on Twitter. And I am scared. I dont want her know how hard the T1D life is.

As I get older I don’t want Anyone to know how hard T1D life is.

I don’t want anyone to see my large stash of juice boxes in the car. Sometimes they are afraid to ride with me because of a possible sugar crash.I don’t want anyone to see me check my sugar every 2 hours or know how it can jump because of my gastroparesis or know how it can crash at 4 am to 40 and Im shaking like a leaf, almost blacking out, drunk walking to the fridge. I don’t want a man to know my sugar can crash in the middle of sex thereby ruining the moment. I don’t want anyone to know I cant have kids because I’m too brittle and I have endometriosis. I don’t even want @verylightnosuga to know I second her on wanting to adopt but – at 35 – is that ever going to happen? I don’t want her to know I share her hopes and fears. I don’t want anyone to know how dry I am. I don’t want anyone to know how bad my legs burn, especially at night and I cant sleep. I don’t want anyone to know that I fear every germ or insect bite like a cancer patient.  I don’t want anyone to know how its hard for me to breathe once my sugar gets up over 250 and I have to then watch it like a hawk. I don’t want anyone to know how much I love my pens. I don’t want anyone to know I carry my insulin on ice so I stash it under the driver seat and leave it there. I don’t want anyone to know the nausea that accompanies me almost every single day for whatever reason. I don’t want anyone to know I vomit from the gastroparesis and its my lunch still in tact from 3 days ago. I don’t want anyone to know the terror of a blister on my foot because it could mean the loss of it. I don’t want anyone to know the diagnosis of the myopic shift in my eyes where all of a sudden my vision changes for better or worse depending on my blood sugar. My glasses are never right. I don’t want anyone to know my feet are freezing and its 113 degrees outside. I don’t want anyone to know I cant exercise at this moment because my sugar is too high. I dont want anyone to know how tired I am and how Im always tired. I don’t want the world to know HOW disappointed I am that @driverRyanReed still supports CrossFit.

I dont want ANYONE to know how much the #DOC means to me.

I look well.

I dont want my baby sister to know its never going to better. Its only going to get worse.

A few more things I learned from the #DOC that my DR never told me.

  1. Go to camp if you’re a kid. Wish I had. There you meet friends for life.
  2. Conferences and such. How cool. I cant wait. I had no clue.
  3. Frio packs. Google and buy if you haven’t done so already.
  4. Technology. Wow. Drs just don’t tell you whats out there and available to you RIGHT NOW! CGM could save your life.
  5. Vitamin deficiencies. D3 and B12 are Very Important. Now I ask that to be included in my blood work.
  6. Liver dumping. Now that’s interesting.
  7. Statins are bad. Just bad. Looking for an alternative.
  8. Meal planning can actually be fun.
  9. Low-carb doesn’t have to be gross.
  10. Adult coloring books. Yep. Thank you @MollySchreiber
  11. Theres tons of books out there.
  12. There are really cool famous people who are T1D
  13. Not everyone is going to support us, even our own.
  14. Advocacy! Just do it! For yourself, future generations and the elderly.
  15. Wear a medical ID.
  16. Take your T1D with you everywhere you go! Be prepared for everything everywhere.
  17. Own it! Own this disease. Because we can!

A few things I’ve learned from the #DOC that my Dr never told me.

I’ve joined the #DOC recently for the first time. And everyone mentions how great it is in passing. Mostly related to emotional support. But there are a few life saving things among other things I’ve learned. We take this for granted. My gratitude is unsurpassed. These are all things my Dr never told me! In 20 years! That’s perspective too! (Thank you Ally for perspective on perspective. :-D)

1. Insulin needs to stay at 35°-45° before opening.

2. Others my age are already going through kidney dialysis. WTF?! I need to get my shit together…

3. Test more often! 3X/day that I’ve always been prescribed all these years is going to kill me. It’s not going to keep me alive.

4. #T1D diabetes sucks. Nomatter how you look at it. We want a cure already.

5. Write things down. Keep a log. It just helps. Period.

6. Everyone else is struggling with the # psychosis just like me. I’m not a loser or a failure because my blood sugar has a mind of its own. Referring to: you do one thing one day, bs is fine. Do the very same freaking thing the next, they are out of this world and off traveling the freaking universe. I’m not alone. The guilt and shame I’ve carried around since a teenager is now going away.

7. The world, people at large, the masses – are completely and utterly UNAWARE of what #T1D REALLY IS.

8. Self Advocacy. We deserve good DRs that listen and if not we are allowed to shop for a new one.

9. Living alone is hard and dangerous. Need to be prepared and take extra precautions.

10. Chats. One chat in particular that talked about health insurance gave me the answers and new information in order for me to get health insurance where I live. No more traveling out of state every month for DRs appts which is Very dangerous for me. My feet go numb after a couple hours of driving. Now I hope to live longer. 😀

11.  Celebrate! What?! REALLY?! Yes! Anything. Everything! Good bs readings, your diaversary, better A1Cs, etc.

Thank you #DOC.

The Bionic Pancreas

This is a tough one for me.  I have spent the last 20 years living in a pipe dream for a cure it seems. The best they can up with is a back light for the bs monitors.  (Although I have to admit – thats pretty damn cool.)  I was accepted for the islet cell transplantation in 2000 with the John Hopkins University in Canada.  I turned it down.  The auto-immune drugs they gave you so your body doesnt reject the islet cells causes cancer.  I thought – well, I can live a little longer than that.

Diabetes might be bad but I wanted quantity over quality of life.   So I quit hoping.  I quit dreaming. And I burned out!

Until I finally got the survey from Glu reg: The Bionic Pancreas.

I never read about it.  I didnt get hyped.  No excitement here. Nothing but resentment and resentment towards the others who WERE stoked.  I mean, how could they be so dumb and lame to believe in much of anything?  By the time I can now buy health insurance with a pre-existing condition, I have been too sick and in too much pain to work to pay for it.  Or have someone else help me out.  Its a little late for me to be happy about that.  But finally!  Finally for all the youngsters starting out in life.

And now the Bionic Pancreas.  And its pretty damn freaking cool!  And it sparked a new hope in me.  It raised my desire to live well.  It gave me, maybe- just maybe – there might be  a light at the end of the tunnel.  All the technology is there. Its already been made. If you dont mind having the invasive tech on 3 sites in your body at times, you can smile again.  🙂

Hello world!

Hello world.  I am a T1D.  I was diagnosed at age 16.  I was misdiagnosed for 4 years beforehand.  Its been nearly 20 years now since diagnosis.  I have created this blog for the first time in my life in order to share with the world my daily thoughts, struggles and triumphs in hopes others can learn and understand.  I am an advocate for awareness and education.

I love kittens, photography, travel, anthropology and naturopathy.

Create a free website or blog at WordPress.com.

Up ↑