Growing up, I was a healthy kid, happy teen and well- adjusted adult. Married with 4 kids...living the dream.
Really my only issue was some anemia here and there for the first 35 years of life. That all changed quite literally over- night. But it’s not what you think...I began a medical mystery journey that would take 17 months and 5 doctors to find out that I had an orphan disease called Stiff-person Syndrome (SPS). 1 in a million, they told me. It is presumed to be autoimmune; it is a neuro-muscular movement disorder, causing spasms, falls and paralysis. During the mystery it was confirmed I had Hashimoto Thyroiditis, another autoimmune diagnosis. It however was a non-issue; my quality of life was just fine. Learning to live with SPS was a full time job, but with time and meds it was under control. 5 years later in a routine visit with my endocrinologist, it was discovered that I had Addison’s disease (adrenal insufficiency), again, autoimmune. I have been very blessed that it has been under control and nothing scary has happened. It requires more medications such as steroids for life. It is manageable. During this time I went back to school, finished my sociology degree and then got my 200 hr. certifications with Yoga Alliance to be a licensed yoga teacher. As crazy as my body was, life was good and I had all that I wanted.
In late September 2012 I got tired. I could do some things, and then I took a recovery nap. I was so thirsty; water is good for you...so I drank. With so much intake, of course I found my need for the restroom more frequent. I did this for a month, spent my day on the couch between a project and a recovery nap. October 12, 2012 at the age of 43, it was time to see a Dr. about this weird UTI (self-diagnosed). I jotted down on a piece of paper all the weird events, symptoms and concerns over the last month, because my brain just wasn’t working so well, and I was having trouble seeing. The only great thing was the loss of 10 lbs...nice! As I was waiting for my UA to come back and explaining to the Dr. about this month long “thing”, the results came in. She explained that my urine was quite different this time; she asked if she could take a finger prick. NO! NO! My heart ached as she took my blood, got another meter and took another prick. I thought here we go, really??? First prick was for BG, 582. Second prick was for A1c, 10.9. I was told to go straight to the hospital, straight...no stops, straight. I cried the whole way there. I got a fast track pass into a room, no waiting or paperwork (the Dr. had pre-checked me in with the ER). They diagnosed me with Diabetes...type 2. There the Dr. stood with my chart, I asked him, knowing my history, could this be autoimmune? He answered, “No, this is what we see in a sedimentary obese life-style.” OUCH! He just called me fat and lazy. For the next 5 hours I was given insulin, monitored and sent home with Metformin to treat my Type 2 and instructions to see my endo. I asked about education...he looked at me with the strangest look. NO, we don’t do that with adults.
The next few days were filled with tears, fear and anger. When I met with my endo, he really just treated it like a non-issue. When I went to leave, I was to make a follow-up apt. at the reception desk. I explained to them why I needed this appointment; a nurse over-heard me and expressed her empathy. This was the first time in days that I was not treated punitively. She asked if I understood my meter and such. I explained I didn’t have one, I didn’t even know what my BG was. She was appalled. Now, I have to tell you what happened next is really not suppose to happen, but I am so glad it did. She, through coded language suggested that my doctor might be the wrong endo in the office, that there were options...hint, hint. I took the hint and asked for a new apt. with the other endo. Immediately upon looking at my chart, it was clear it was Type 1 diabetes (test later confirmed the anti-body), I tell you this because the minute the diagnosis was changed so did the mood. All of a sudden, people were saying “I’m so sorry” and “how are you”, “lets get you some education”. I was no longer the bad girl who ate too much sugar, but the innocent victim of yet another autoimmune disease. That was 4 years ago, I have been through a few endo changes and love my current Dr. We have a good relationship, he is very open to letting me be a part of my care. Steroids and insulin are not friends...I am a very complicated case. Yet, my A1C is great, my TSH is perfect and my ACTH is awesome. When I see him, he feels accomplished; he gets a 3 for 1 visit.
Living with T1D is so frustrating. I am a happy, outgoing person, ready to be an A+ student at anything I do. There is no way to maintain A+ status with T1D. Just complaining about why my correction didn’t work, makes my BG go up and my A+ go down. I am learning to release my need for perfecting my health. Not being in control is hard. Believe me, I am doing everything I can right, but some days it just doesn’t matter how perfect I am, my numbers will be high.
What T1D has taught me is to see the positive, be grateful for the good days and give my self a break on the bad days; most likely it’s not my fault. It has taught me to have a doughnut with a correction from time to time, because I deserve to enjoy life too! It has taught me to be in tune with my body and to follow through with my intuition. I have a CGM to tell me when I am low; I don’t feel lows or highs. This seems like a good thing, but it isn’t. I have gratitude for the technology we have and hope for the technology we are working on. I am currently teaching yoga in 2 gyms here in the Salt Lake Valley, I have to silence my CGM, because I have false lows during exercise, and then I have real lows...it’s a crazy balance. I believe that my success to date has to do with attitude, gratitude, exercise and education. I am not “sedimentary and obese”, I am a victor!
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