A Fight to Live: Addison's Crisis in America

                The summer is slowly fading in to fall. The mornings are cool and breezy and waking up with the windows open is so refreshing after record heat this past summer. Fall term in college is well underway. With these changes, unfortunately, cold and flu season has also arrived. For an Addison’s patient, this is a recipe for disaster. A daily dose of steroids to maintain health is intended to stop the immune system from attacking the adrenal glands and replace the cortisol that they no longer produce. When the flu creeps in, the normal body will naturally produce more cortisol to try to fight it off. Addison’s patients don’t have the same ability to fight off disease, so they have to be especially careful during cold and flu season.

                Yesterday, I got to experience this phenomenon first hand. I woke up coughing and sneezing with a sore throat. I had been fighting the sore throat for a couple of weeks already, but yesterday, it finally got the best of me. In addition to my daily dose of medications, I took a “stress dose” to give my body the extra defense it needs. By the time I finished an eight and a half hour school day, I was wiped out. The first Presidential debate was on television and I wouldn’t miss it for the world. I was like a little kid on Christmas waiting for Santa to come! By 8:00 at night, I had taken my bedtime dose of Hydrocortisone and Prednisone and I was in my comfy jammies (bottoms adorned with donkeys and my Obama 2012 t- shirt), nestled in bed, snuggling with my girl and my Pit Bull, Aiden. The lower back pains that had been bothering me all day were starting to get worse. By midnight, it was apparent that I would need emergency treatment so off to the hospital we went. On the way out the door, I grabbed my Phi Theta Kappa hooded sweatshirt to keep me warm. I also made sure to bring my information sheet for emergency medical personnel so the hospital staff would know how to treat me since Addison’s disease is so rare.

                Once at the Emergency Room, the pain was increasing to the point that I was in tears and things were getting a bit foggy. I got signed in and the greeter told us to have a seat. A little while went by and they finally checked my vitals: pulse, blood pressure, and temperature. They put me in a wheel chair and rolled me back out to the waiting room. I felt like I was going to die. The pain was so severe that I thought I would pass out. Then the chills and shivering took over. That’s when my partner went over to the greeter and said, “She’s freezing, which means her blood pressure is dropping. Please hurry!” The staff brought me a warm blanket and still, they left me in the waiting room.

                After waiting for over an hour, they finally had a room open up and put me in a bed. Nobody on staff had ever heard of Addison’s disease and several of them commented, “Oh, I’d like to do some research on that”. Yet, nobody would even look at the fact sheet I brought for them. The nurse came in and hooked me up to a monitor and said the doctor would be in soon. Thirty or so minutes later, the doctor came in and listened to my lungs, felt my stomach, and asked me, “Do you got blood in yer pee?” My girlfriend explained to him that I was having an Addison’s crisis and needed treatment. He blew her off and said he’d be back. The nurse came back in the room and explained that they need a urine sample, blood work, and x-rays. I explained to the nurse that I didn’t need lab work, I needed treatment. She stated that the doctor wanted to test me for drugs. He also needed to make sure I’m not pregnant so he can do x-rays. I pointed to my girlfriend and said, “I’m pretty sure SHE is not going to get me pregnant!” I also assured her I am not on any kind of street drugs. She then resorted to bargaining with me by promising that the doctor WAS going to give me pain medication, but he needed the lab work first. I told her to go check my records; that I had been to this ER many times, had tons of lab work, x-rays, and even have scar tissue from all the IVs I have had. I reiterated the fact that I do NOT have insurance and I refuse to pay for unnecessary testing – especially since they will not send the results to my regular doctor anyway, despite several requests. She said my only other option was to sign a waiver saying that I refused treatment and release me. 

It was at this point that I was fuming! I finally yelled at the nurse and insisted that I did not want or need pain pills – that what I need is for someone to look at the damn fact sheet and administer the treatment that is says I need. What part of life-threatening did these people not understand?! I was not there to “score” some pain pills. I was dressed in pajamas with Democrat donkeys all over them (on the night of the debate) and an Honor Society sweatshirt. I have a Medic Alert bracelet on with the corresponding ID numbers on a fact sheet which lists all the symptoms of an Addison’s crisis, along with the treatment necessary, all the medication I take daily, my doctor’s contact information, and my emergency contact information. This poor little sheet is in inside a plastic sleeve and is so worn that it looks like it has been around the world and back. I am obviously NOT a drug addict, but a total nerd, who is very knowledgeable about my disease. I understand that most medical personnel are not aware of this rare condition, but I have to live with it every single day.

                The nurse eventually understood where we were coming from and asked to see the fact sheet to show to the doctor. She promptly returned to my room and said she would order the Sulo-Cortef from the pharmacy and it wouldn’t take too long to get it down to the ER. Three hours after arriving at the ER, the nurse finally came in with a monster needle. She stood behind me and said, “Okay, you’re going to feel a big stick.” All I felt was her applying the band aid. The pain in my back was so bad that a huge needle didn’t even faze me.

                This is not meant to be a political post, but for my readers from the United Kingdom and Canada especially, this is the story of health care in America today. Living with Addison’s disease is no picnic, but it is manageable. Living with Addison’ disease with no health insurance is a little trickier. I am forced to be my own advocate because, sadly, nine out of ten doctors will not listen to me. Ego sometimes gets in the way of saving lives. When it comes to your own health, you must remain diligent. It’s YOUR health – not anyone else’s. What do you think of the current state of health care in America? Leave your comments below.

               

Budget-friendly Living

Being a poor college student and a mom of 10 fur-kids, I am always trying to come up with creative ways to save money. At my age, living in a studio apartment eating ramen noodles off of a table made of pallets, nestled on a couch made of FedEx boxes, is not exactly my idea of home. I live in a 2,000 square-foot house with a dream kitchen. My ideas of home décor and fine cuisine demand a little more than that. 

After posting a picture of my living room on Facebook, one of my friends commented that it looks like a picture out of a magazine. That got me thinking since I hadn’t really put much planning into the room. Decorating is definitely NOT one of my talents. As a result, I thought I’d share a super-easy, budget-friendly project with you. (See picture below.) I bought a collage picture frame set from Tuesday Morning a few years ago for under $30. You can easily find similar frames at any discount big-box retail store or at your local thrift stores and yard sales. Look for something simple that can go with any décor or style. The frame should not overpower what is in it. My frames have seven openings. Next, fill the frames with images that you love. When I first bought my frames, I put black and white pictures of my family in them. Once I moved in with my partner, we had a completely different décor than I had in my apartment. So, I changed out the pictures in the frames to match. I simply went online to Google Images and put “mint green” in the search bar. Up popped pages of images with mint green in them. I just picked out seven that I liked, even though they were completely unrelated. One was of a fire hydrant, another of a Vespa, yet another of a skirt made of men’s neck ties. What they all had in common was the color mint green. What the image is of doesn’t matter. Next, print them. I just printed mine on regular old paper, nothing fancy. When you put them all together, you get a piece of art that goes with your room, cost next to nothing, and is uniquely you! 

Today, I decided to change it up and update my art to coincide with my new living room décor. This time, I didn’t go for color, but for mood. I Googled images of hippie-type things that make me feel relaxed and open-minded like mandalas, patchouli, goddesses, incense, chakras, runes, and meditation. When you see the picture below, you will surely be able to smell the Nag Champa. 

All this creativity made me hungry. It’s a good thing I had some leftovers from last night, which was a kind of collage dinner that I thought I’d share as well. With the weather turning cooler and my classes getting increasingly demanding, I needed a quick, easy, cheap, comforting dish. Here’s what I did. I grabbed a can of Minestrone soup out of the cabinet. I make this often, by the way, especially in the colder months. Every time I make it, it is different, but always yummy! Next, I scour the cabinets for any of the ingredients that already come in Minestrone: beans, veggies, pasta, etc. It’s the kind of dish that is better with whatever you have on hand – a sort of “clean out the cabinets” kind of meal. The great thing is that you can make it to feed two people or you can make it to feed a crowd and anything in between.  You can also make it meatless or with meat. 

I usually make mine for two people by browning ½ pound of ground beef with some diced onion and pressed garlic cloves in a big pot. Once the meat is brown, I add a the can of soup, a can of broth (whatever kind I have on hand), a squeeze of tomato paste (from the tube), and throw in whatever can of veggies I have hanging around -- NOT drained since I need the liquid. Sometimes, I throw in a can of beans. I like a little kick in mine, so I add whatever hot stuff I have on hand, whether it is crushed red pepper or a few drops of tobasco sauce, it adds to the warmth of the dish. After I bring all of this to a boil, I add in some pasta. I like to use the smallest pasta I have in the cabinet, or you could break up some angel hair pasta or even broken up spaghetti will work. I look at the concoction, see if I need more liquid to cook the pasta, and add water as needed. When the pasta is al dente, it’s done! Garnish with Parmesan cheese and serve with bread. I like to eat my Minestrone with Jimmy John’s day old bread, which costs 50 cents and is better and fresher than any bread you can find in a store. If I happen to forget to grab some JJ’s day old, I will sometimes make cornbread, which is also great with this dish. Like anything Italian, the leftovers are always even more delicious than the fresh dish and is one of the FEW leftover dishes I will even eat! 

My love of divine food and desire for my home to be my sanctuary could prove to be expensive. As a student, I would be living above my means to afford me the lifestyle I enjoy. With a little creativity, I manage to live on shoestring budget with little sacrifice and still enjoy the finer things in life. 

What are some creative ways that you save money with little sacrifice? 

A Lucky Girl With a Life-Threatening Condition

Yesterday was a big day. I got diagnosed with Addison’s disease – a life-threatening condition. I have an array of feelings about my diagnosis including relief, victory, and hope. I’m not going to lie, I do have a dash of self-pity thrown in there, but it only creeps up once in a while. It’s been a long battle to get to this day. One filled with countless visits to the emergency room, getting brushed off by doctors, and skeptical friends who have said, “You don’t look sick”. It’s been exhausting and frustrating, but I kept at it. I believe that, when it comes to my health, I am my own best advocate. If I get a door slammed in my face, I just go knock on another one. I keep going until I get an answer. Yesterday, I finally got an answer. 

Throughout this ordeal, my partner has been my rock. She has believed me. She has supported me. She understands me. She knows I don’t feel good even before I do. She’s been my cheerleader, my caretaker, and my motivation to keep fighting. She’s had my back. She has taken me to the ER. She has talked to the doctors. She has remembered to tell them the things that I don’t necessarily forget, but symptoms that have become such a part of MY “normal” that I didn’t realize that everyone else doesn’t experience these things on a regular basis. I have been sick and increasingly getting worse, for so long that I don’t even remember what it feels like to be well. She has made certain that I have done what I need to do to feel better. Even when she’s been tired and stressed out, she has still taken care of me. I am blessed.

Another person who has been invaluable through all of this is my manager. Working in a restaurant, it is common practice and company policy to find someone to cover a scheduled shift if you cannot. Unfortunately, Addison’s disease rears its ugly head without notice. My manger has never been anything but accommodating and sympathetic. If I am having a “bad day” as I call them, all I’ve had to do is text him and tell him I’m sick. He has worked it out, been short-handed, or covered my shift himself every time. Mornings are often the worst time of day for me. Visiting the bathroom with nausea and upset stomach takes time. Getting ready in the mornings takes twice as long as it used to and, it seems, no matter how early I wake up, I can’t seem to get out of the house on time. I went from being a dependable employee, always 15 minutes early for my shift, to one who can’t remember the last time I actually arrived at work at my scheduled time. My manger has been completely supportive with his sense of humor and I have joked with him that my schedule should say “ish” after the time. I am truly grateful that he is my manager and I know, without a doubt, that if I worked for anyone else I would have been fired long ago. I am one lucky girl.

I have been fortunate to have a few people in my life who have not given up on me. They have encouraged me to keep fighting. Two years ago, a doctor told me that I probably have an autoimmune disease. He also said that testing to figure out precisely which autoimmune disease I have would take at least a year, would be expensive, and, without insurance, would be especially expensive. Even through the “bad days”, I have persisted. I have read and researched my unique combination of symptoms and brought that information to my doctors and loved ones. I searched for doctors who would work with me, an uninsured, low-income patient. I’ve been through a lot of doctors, but one of them finally sat down, looked in my eyes, listened, and wrote down everything I told him. He was humble enough to admit, “I don’t know, but give me a few minutes to do some research”. He did his research and returned to tell me that I have Addison’s disease. He wrote me a stack of prescriptions and then ordered lab work. He called me today (a day earlier than he said he would) with the results. He asked me how I am doing. He told me to keep checking in and keep him posted on how I’m doing.  He changed my mind about doctors. 

Finally having a name for why I am sick is so incredibly relieving. Having the proper medication gives me hope. The past few years have been a chapter in my life that has been full of “bad days”, stress, and unimaginable fear. My focus has been on advocating for my own well-being and health. Getting a diagnosis is truly a victory. Now that my health is going to improve, I can get back to the things that make life worth living.

Creativity Binges

A lot has changed in my life since I was a teenager, but one thing that has not changed is my late-night creativity binges. I can still remember, back when I was in high school, at the end of the day, after homework and dinner time, when I had gone to my room to settle into bed, I would get the itch to make something. I recall staying up until the wee hours of the morning, hand-sewing an outfit to wear to school the next day. Twenty years later, I still get bitten by that bug at the end of the evening, when I have settled into bed to unwind. Something about the still of the evening allows me to relax and have a quiet moment in which I am open to listening to that little voice of creativity that had probably been nagging at me all day. My favorite time of day is the evening. I look forward to hearing what my creative voice has to share with me. 

What is your favorite time of day to be creative? When do you get your best ideas?

Free Time

To do list:

Homework for four classes

Honors projects for three classes

Go to five classes

Go to work

Go to Phi Theta Kappa meeting

Take care of five dogs and five cats

Do volunteer work for CASA

Straighten up the house

Cook dinner

Take medicine for Addison’s disease

Gas up the car

Take a shower

Get some sleep

Do something creative

What? Do something creative? But I don’t have time! This is what my typical week looks like. My creative outlet is writing and I aspire to publish my first book within the next year. With all of the deadlines placed on me by others, why would I put an additional deadline on myself? Because everyone should make time to pursue their dreams and this is mine. This book is a story that needs to be told and I am inspired to tell it.

Some simple solutions I’ve found to this problem of having enough time for my writing involve some careful planning, preparing, and a little bit of luck. The cool thing about the art of writing is that you don’t need a lot of materials. In fact, the only thing I need is my little laptop. I take it to class anyway, so it’s with me when I’m on campus and when I’m at home. It’s inevitable that, at some point, a professor cancels class at the last minute, which, at a moment’s notice, frees up an hour and forty-five minutes until my next class starts. School is twenty minutes from my house and gas is nearly four dollars a gallon, so going home and then back to campus is not an option. But, since I have my laptop with me, I can find a quiet place on campus, get out my laptop, and visit my manuscript or my blog. 

I’ve made a habit of taking my laptop with me anywhere I go where I will probably have to wait, like my doctor’s office. With doctor’s appointments alone, I’m guaranteed at least an hour a month of free time. Free time…..everything’s better when it’s free, right? And free time to pursue my dream – fabulous!

So, what's your dream? I'd love to hear how you find time to pursue it! Leave your comments below...