I was diagnosed with Type 1 Diabetes exactly two weeks ago today, on May 14, 2014. After a three year struggle with a ton of random symptoms and no answers, I finally got the phone call that would change my life, for the better I'd like to think.
Three years ago, I got really sick. Now when I say sick, I'm talking 103 fever for a week, unable to eat, couldn't keep food or anything at all in my system, plagued with shakes and shivers and sweats. I lost 20lbs and couldn't gain it back for a year. You can read more about it in a previous blog post here. The doctors just said it was a nasty virus, that I had parasites. After that, I began my three year battle with negative test results and being treated for things I didn't have. All of a sudden, I had skin rashes and welts, was being treated for stomach ulcers and undergoing an $1000+ endoscopy, and saw a GI specialist. All tests came back negative. Those symptoms started to go away about a year after they began.
Then last August, I noticed swelling in my left leg. I had been at the lake hiking and camping and wakeboarding and thought maybe I pulled or twisted something, or was bitten by a bug of some sorts. I came back to LA with the swelling and it never went down. I ended up seeing a podiatrist, an orthopedist and had an ultrasound for blood clots, an MRI and XRay to look for torn ligaments or broken bones. Nothing hurt, and all those tests came back negative as well. I then reached out to a vascular surgeon who suggested I see a lymph specialist. I probably would have spent more time in her office had they accepted my insurance- and thank God they didn't.
About six weeks ago, I started telling my trainer about my leg swelling and other symptoms that I was experiencing; waking up in the middle of the night drenched in sweat, sudden shakes and sweats and blacking out in the middle of the day, etc. It was then that she told me she was diagnosed with Type I Diabetes about six months ago and had been having a lot of similar symptoms. I still didn't believe that I had diabetes. One Sunday afternoon, I was walking in Venice with my sister and another friend and I had another episode where I started to get shaky and sweaty all of a sudden. Once again, the conversation led back to diabetes. I decided maybe I should go in.
I made an appointment with my primary doctor to get a blood test. When I went in and showed her the swelling in my leg, she prescribed me blood thinners and referred me to a bone and muscle tumor specialist and ignored my request for a blood test. It was time to take matters into my own hands.
I called the endocrinology department at UCLA the next day and made an appointment to get my blood drawn. My initial blood tests came back with higher than normal blood glucose levels and my doctor told me I had "prediabetes." WHAT?!
She ordered another round of blood tests to be done (which were horrible but I'll save that for another post). She was looking for certain hormones and antibodies that would indicate if it was Type 1 or Type 2. (More on the difference between Type 1 and Type 2 in a a later post.) To make a long story short, she called me the morning of May 14, 2014 to tell me that my tests came back very positive for Type 1. I went in to see her that day and was immediately sent to the pharmacist where I left with over $100 of insulin and insulin testing supplies, a blood glucose meter, and no direction on how to use any of this stuff.
To be clear, I had been praying for something to be positive so I could finally have an explanation for all the things I had experienced over the past couple years. When I got that phone call, I was actually really relieved. It's funny to think that relief was my first emotion but in a way, my trainer had prepared me for this sort of diagnosis. I felt like it would all be ok.
Then I had to start telling certain people- my family, friends and my work. Let me tell you something- the worst part about this diagnosis isn't that my pancreas doesn't produce insulin correctly, it isn't that I could gain weight from the artificial insulin I have to use now, it isn't that I have to prick my finger 6 times a day or inject myself with insulin every night or even the fact that I have a potentially life-threatening illness. The worst part of it all is that all of a sudden I'm in the spotlight and receiving more attention than ever before.
Let me clarify. I feel tremendously guilty and extremely ungrateful for saying that. I am so beyond grateful for the outpouring of love and support I have received. I guess what I mean to say is that everyone has their own struggles that they deal with and mine is no different. People assume I must be "devastated" with such a diagnosis and the thing is, I'm not. Life goes on and nothing has changed for me except for a few finger pricks and injections here and there.
The truth of the matter is, I don't want my peers (close family and friends) to begin to resent me for the attention this disease has garnered for me. I do need their support and understanding because there will be days where I absolutely don't feel well. But don't we all have days like that?
I didn't ask for this to be a part of my life, but it is. In fact, I begged people not to treat me any differently because I don't see this as an "uphill battle" that I now have to fight. I see this diagnosis as a part of my life that maybe one day, with any luck, will inspire others. A life that might grant insight and shed some light on the illness in adults. A life that perhaps one day could provide some kind of scientific research for doctors that could help save someone else's life. God has a plan and it's bigger and better than any plan I could have ever had for myself. I'm strong enough to handle this and brave enough to do it with a smile on my face, and it's all because my strength comes from the Lord. This disease, while potentially life-threatening, is no different than the many different kinds of struggles you all face everyday. This one just happens to be mine.
Life is so beautiful and even when it's ugly, there is still light. And until heaven meets earth, I am still going to live life the way He intended us to live it- full of love and rich with purpose.
The power of prayer is true and it's real. Don't waste another day unhappy- we've all got something we're dealing with and you never know when one phone call could change your life.
Hello Torrey-Leigh -
ReplyDeleteYou are most certainly not alone!
My name is Kelly & I've lived with t1 diabetes for over 3 decades & yes indeed, life is beautiful and challenging.
Hey, did you know that there is an amazing Diabetes Online Community (the DOC) that can help you navigate the diabetes waters?
And I have no doubt that your voice will be a wonderful addition to our community.
If you have any questions or need any help, please reach out and ask.
We, all of us living the diabetes life are in this together!
PS: My birthday is May 14th :)
PPS: I hit "enter" 2 quickly. I'd intended to write: PS: My birthday is May 14th :) , so I feel extra protective of you!
DeleteHi!
DeleteFirst of all, thank you so much for reading my post and taking the time to comment on it. Since my diagnosis, being open about it has led to so many people coming forward and sharing their own experiences and that is just so incredible to me! I hadn't heard of the DOC yet, but I will definitely check it out and look to be a part of that community. You are very sweet about feeling protective of me and Happy Belated Birthday! I'd love to hear more of your story at some point soon.
Best,
Torrey
Welcome to the club no one wanted to join! I'm sorry to hear the news, but you seem like you have a really good head on your shoulders. Please let me (or anyone else in the DOC) know if you need anything. Integrating something brand-new like diabetes into your life can be tricky, but there are plenty of people around ready to answer your questions or send you some love. :)
ReplyDeleteHi Allison!
DeleteThank you for taking the time to comment and welcome me to the club! :) I'm still very new to the whole thing and I'm sure I will have questions coming up as time goes on. I'd love to hear your story as well whenever you have some time to share! Thank you so much for reaching out to me (a complete stranger!) and sharing your love.
All the best,
Torrey
Welcome! My husband and son were diagnosed 4 months apart. (Husband had been previously misdiagnosed as type 2.) It does take time to adjust to this new life, but it sounds like you are off to a positive start. The DOC is an amazing place!
ReplyDeleteWow! I read your stories on your blog and that is just incredible. What a scary rollercoaster ride you must have been on. Thank you for welcoming me and looking forward to getting to know you :)
DeleteHi Torrey Leigh!
ReplyDeleteWelcome to the DOC! You are a blogger, so you're in our club! It's more support to help with dia-burnout or anything along the way. After a year of struggling and misdiagnosis, I was diagnosed correctly as Type 1.5 or LADA on July 23, 2011. I started pumping the following January and my life is forever changed.
We are all here any time you need anything!
-Charli (charli1point5 on twitter)
Totally confused about the whole 1.5 diagnosis thing...what exactly does that mean medically for you? And that's funny about the glasses! :) This DOC community is already amazing!
DeleteHi Torrey....your Mom shared your blog with me and I shared it with my good friend Kelly (the first one to send you love up there ^^). So I'm kinda responsible for all the attention you're getting from the most amazing group of peeps in the world, the DOC. As I mentioned to your Mom, They are totally the cool kids and will lend as little or as much support as you need or want. They've all been there. Please feel free to get in touch as needed - even if it's a simple thing like pumps and where to put them or how to do anything you want despite advice from well meaning peeps. You've got this!
ReplyDeleteHi Joanne!
DeleteYes my mom has been telling me all about you and your involvement with diabetes and I would love to chat soon. Maybe in a couple weeks when my work schedule has died down for the summer. Thank you for sharing my blog- the support is incredible. It's really nice to have people to talk to who experience similar things!!
Thanks again :)
T
Just popping in to say hi - T1D for 28 years, here. I'm sorry you had to go through all of that unnecessary nonsense to get a correct diagnosis. I'm wishing for good things for you, as you adjust to this new version of "normal"!
ReplyDeleteThank you so much for saying hi! Looking forward to sharing with everyone and getting to know you and navigating through this new world. I appreciate you reaching out!
DeleteBy the way, I have the same heart-shaped sunglasses. So when I posted your blog, my friends thought it was one I wrote!
ReplyDeletedefinitely don't want to say "welcome to the club" but you are, unfortunately, a part of our big club now.
ReplyDeleteI wish you weren't (??)
there is support out there and its way better than whatever your doc can give you. real life experiences! we are a welcoming bunch :)
I'm definitely beginning to see that experiences are a much better learning tool than the doctor's info. They don't seem to have a clue as to what is going on. Thank you for welcoming me :)
Delete(continued) Anyway, have you by chance seen a CDE and gotten "diabetes education?" I read your dx story--SO sorry you had to go through all that--how frustrating. One thing I didn't mention in my dx story on my blog is that I was actually misdiagnosed as a type 2! We didn't know anything about diabetes, but I have an aunt who is overweight and has type 2, so she referred us to her doctor. He specialized in working with geriatric patients who 99.9% of the time have type 2, so of course he told me I also had type 2 (despite the fact that I was 18 and 105 lbs). My point in mentioning this is a lot of doctors, believe it or not, don't know what they're doing when it comes to diabetes care. Usually endocrinologists will (if you live in an urban area--I've heard of some in rural areas who really dont know what they're talking about if they dont keep up on the literature), but unless they specialize in diabetes care I would not trust my care to any ol' doctor, and I would definitely look for someone with a proven track record in diabetes care specifically. My mom was smart enough to get a second opinion, and my new doctor set me up with insulin, showed me how to use it, and got me working with a CDE (certified diabetes educator). I took a several week long class (we met once a week for like 6 weeks) and learned about carb counting, basal rates and how to figure them out, how to treat a low, insulin pump options, what I should be eating, etc. My CDE told me her goal was to make sure I knew more about diabetes than most doctors do. You may have seen a CDE and gotten said education by now (so if you know all this I apologize for repeating), but if you haven't I would strongly encourage you to! Right now I am seeing doctors at Joslin Diabetes Center in Boston. Joslin is known as one of the best diabetes care centers in the world, and they have a location in Palm Springs, California!! (Joslin Diabetes Center Affiliate at Desert Regional Medical 1140 N. Indian Canyon Dr., Ste. 100 Palm Springs, CA 92262 760-323-6881). It's truly one-stop shopping for all things diabetes, and my experience with them has been great. My A1c went from a high of 8.4 (worst since diagnosis, due to some depression and lazy eating) to 6.5 in a little less than 6 months, and now it's down to 6.1 (I hope to be in the 5s next appointment! But I'm trying to get ready to maybe have a baby, otherwise I'd be perfectly happy in the low 6s).
ReplyDeleteAnyway, I hope that things are going well for you besides those terrible lows! I personally found my first 5 years with diabetes to be kind of an inconvenience but ultimately not a big deal. This last year though has really been a killer, and I've needed to heavily rely on my support groups and the help of a psychologist at Joslin who specializes in working with diabetic patients (she's a Godsend!).
If you're looking for some good online support groups, there is one on facebook that I am a part of that has been really helpful when I've had questions: https://www.facebook.com/groups/youngwomenwithdiabetes/. I love going to my FB support groups when I have a quick question and no time to sit on hold with my doctor (say, if I'm at work), or if I'm just curious about other people's experiences. Anyway, I've written a small novel now, possibly filled with things you already know!! lol Do feel free to reach out if I can be of help in any way, even if its just that you need a virtual hug and some validation from people who have been there!
Hugs!!!
Gabby