With the tittle of this blog post, I am speaking both figuratively and literally. It has been a rough couple of weeks. Intially, I had some sort of virus that turned into a sinus infection, tonsilitis, and a double ear infection all at the same time. Talk about a triple threat and not in a good way. As I was starting to get better, I developed an abcess in my mouth. Yeah, how that happened, I will never know. This was a more extreme infection that required another round of antibiotics--this course far stronger than the last. The pain was so bad that it was virtually unbearable. And believe me when I say that I'm no stranger to pain and I have an unbelievably high tolerance for it--I will explain later. Finally once cortizone was added to the mix, I was able to get some relief as the inflamation started to subside. Now all I have is a tiny lump in my mouth, minus the pain--yay! I had a follow-up this week with my Ear Nose and Throat specialist who said it was healing very nicely so that was good news.
To the average person, my above explaination dosen't sound extreme, just a few uncomfortable maladies to deal with. Throw Type 1 Diabetes (Juvenile Diabetes) in that mix and I found myself in a situation that was virtually impossible to manage. Blood sugar is affected by hundreds of factors from hormones to stress. As a result of the infection and medication, my blood sugars were swinging like a pendulum. My lowest number was a dangerous 29 and my highest number was in the 500's. An average person's blood sugar without diabetes ranges from 70-120. When my sugar is high, I am miserable, cloudy headed, exhaused and unable to function as concentrating is impossible. It's hard to think much less focus when you're above 250. With a sugar reading of 29, I am unable to even place a straw in a juice box, nor can I open a vial of glucose to drink. I am shaking, sweating and my heart is beating faster than I ever thought possible. Recovering from a low takes hours as it is such a shock to the body. Well my husband (Earth Angel) has saved my life on numerous occasions. The past few weeks have been no exception and brutal on both of us...
This blog is kind of all over the place as I am still not feeling 100% and I am having trouble concentrating so please forgive the flight of ideas.
I should explain what Type 1 Diabetes is... Type 1 Diabetes is an autoimmune disease in which the immune system attacks the insulin-producing beta cells in the pancreas, killing them and rendering the patient insulin-dependant for life. Those with Type 1 must test their blood sugar upwards of 15 times per day and must rely on insulin therapy via pump or multiple daily injections as a means of life support. Also known as Juvenile Diabetes, it strikes suddenly, without cause and there is nothing that one who is afflicted with it could have done to prevent it or can do anything to cure it. Only 5-8% of those with diabetes have Type 1. It is typically diagnosed in childhood and adolescence but can strike at any age. Symptoms include sudden and dramatic weight loss, extreme hunger, extreme thirst, excessive urination and exhaustion. If undiagnosed for a couple of weeks one can find themselves in the hospital in Diabetic Ketoacidosis. That is an explaination for another post as I could literally write about Type 1 Diabetes for days and not be able to fully explain the complexity of the illness.
Illness affects sugars pretty dramtically and management has to be done differently so one doesn't wind up in the hospital like I did last summer. I had to be transported by ambulance and that was no fun at all.
Living with the illness is a challenge as the needle sticks and blood checks get pretty old but I am used to it. I had better be, I'm going to be living with this illness until a cure is found.
I was diagnosed six weeks before my wedding and at diagnosis I was about 90lbs. We cancelled our honeymoon to join a research study in Southern California where they dripped an experimental drug into my veins for 10 days. The idea behind the trial was to supress the portion of the immune system that is responsible for attacking the pancreas. The drug had to be administered within 8 weeks of diagnosis as it is said at that point, ones pancreas hasn't been fully destroyed and there are still some functioning beta cells. Scientists are working on a drug to preserve what little is left of of the beta cells in an effort to reduce complications down the road. After my initial dosing, I flew to L.A. once a week to have my blood drawn and be evaluated. The drug made me deathly ill. I had a rash all over my body from a cytokine release and my father and husband had to literally carry me to treatment some mornings. The drug didn't work, but I contributed to an advancement in medical science and I did everything I could to give myself the best option at an attempt of saving my pancreas.
Strangely, those two weeks in L.A. were tough but I had my parents and my husband by my side. We stayed in a Marriott Residence Inn with two bedrooms and living room and a kitchen. Perfect home away from home. It was January and 40 degress at that time and we even had a fireplace. It was very cosy. I had so much familial support and felt so lucky even through my struggles. Now, I truly know the meaning of the saying...It was the best of times, it was the worst of times. The fun part was I went to PINK at Victoria's Secret and bought myself comfy pajamas to wear through the entire ordeal. Shopping always makes me feel a little better...
This diagnosis has been a profound experience that has changed my life in unthinkable ways. While a virtually impossible daily challenge and a curse I wouldn't wish on my worst enemy, I am beginning to see the silver lining in a disgusting and unmerciful disease that virtually destroyed my life. It destroyed my life for a while, ripped me from a job in the news that I loved. Now there is nothing I can do without testing my blood and taking that into consideration. I haven't slept a full night in four years. I retreated from people and my friends for a long time because I didn't want to have to explain why I was so skinny--I have finally gained all of my weight back. I still cannot comfortably go out to dinner with anyone but the closest people to me and any type of function in which food is involved makes me want to crawl in a hole and disappear. With eating comes constant testing and it's still too new for me to pull out my glucometer and test my blood in front of people and it's also hard to give injections in front of people and it really sucks when people say hurtful things like, "I could never give myself shots. I hate needles." For which I retort back (when I'm not too exhausted), if you wanted to live, you could. Type 1 Diabetes has taught me that the world is a very cold place with ruthless people and it has also taught me that there are wonderful, kind and sensitive people as well. And I found out real fast who my true friends are. It has hardened me but I'm okay with that and I actually view my illness as a badge of honor. Unless one lives with the disease themselves or lives with someone who suffers from it, it is impossible to understand and grasp the varibles and unpredictibility of Type 1 Diabetes. I am afraid now to go to bed as I know I may not wake up but with that I don't take a single minute for granded. The illness is everchanging and I can go from fine one minute to on the verge of having a seizure the next. I am proud to say that I am slowly but surely getting my life back. While I have setbacks every day and will continue to for the rest of my life, I push forward not always because I want to, but because I have to.
Shortly after my diagnosis, I found great solace in the Juvenile Diabetes Research Foundation (JDRF). It was many of the people within the organization who provided me with a sense of comfort. I am an active volunteer and was contracted as an event planner for the JDRF 2011 Walk to Cure Type 1 Diabetes, which was a great success. I have served as a local emcee for the organization and have hosted gala's, organized walks, and golf tournaments for the past three years. I have worked with families and delivered bags of hope to newly diagnosed children in hospitals. I have had parents crying in my arms as I reassure them that everything will be okay. Hard, but okay. And most importantly, I have served as a role model to young girls who were afraid that their friends would no longer like them and who were scared to death of the diagnosis they received. I have fundraised and spoken at may local companies, schools, and organizations educating about the illness. That is my silver lining. Below is a picture of JDRF's Bag of Hope featuring Rufus the bear with Diabetes. This bear is a superstar and has his own glucometer and felt patches on his skin to show where to give shots and test blood. The original Rufus and his friend Ruby rode on the Space Shuttle Atlantis mission STS-112 in 2002.
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| JDRF Bag of Hope Photo Courtesy of the Juvenile Diabetes Research Foundation |
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I had to add my love of jewerly to this post! My ode to Rufus! Both pieces are vintage and purchased on E-bay. The ring is 20+ years old and was actually a custom made piece for a young girl who outgrew it. Her mother sold it to me and was so touched when I told her why I was purchasing him. You can't see from the photos but the bear is so detailed, he even has CHEEKS!!!! The bracelet is just a strand of six bears and vintage as well. Rufus is my hero and the hero of many others! |
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| Pink Swarovski crystal and rhodium collectable Dior necklace. I never loved bears before Rufus and had to throw his likeness into my jewerly collection. |
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| Rufus and Ruby in their space suits equipt with mission patches. Picture courtesy of Children with Diabetes. |
I did not write this post to gain sympathy. I'm just keeping it real and always looking for an opportunity to educate people about Type 1 Diabetes, as it is so rare. Most people think diabetes is diabetes and that is not the case at all. General public knowledge is about Type 2 Diabetes as it has reached epidemic proportions. The two illnesses are as different as chocolate and vanilla. They are diagnosed differently, onset symptoms are different and management is also different, as well as the cause being different as Type 1 is a disease of the immune system.
I talked about getting back in the saddle, which I did. Figuratively, I overcame infections and have finally managed to get my blood sugars back in normal range. For how long, I never know, but I am finally returing to life for the time being...
Literally I was back in the saddle, as I was finally able to horseback ride yesterday.
For more information about Type 1 Diabetes and the JDRF visit http://www.jdrf.org/.
