Tuesday, February 8, 2011

#32 - Support Systems...

Support systems in all areas of life have tremendous value. I believe that sports demonstrate the powerful effect of a support system. Whether you are the football or volleyball player sweating and pushing yourself to the max or even if you are the armchair cheerleader or living room coach, you are a part of the system and supporting the cause. However, not all support systems are created for fun and recreation, others are out of a dire need to find others with whom you can relate or who can provide guidance through the shared cause.

I am finding, so often, that those who are confronted with Addison's/adrenal insufficiency are also dealing with other conditions that complicate their health. Our body is such a delicate, intricate, marvelous piece of work. One area goes out of whack and other areas soon start wobbling. That is why it is imperative to immediately tackle the first area of malfunction as quickly as possible...before the other parts start to follow suit. Heading off a negative chain reaction is the best option. But, for those of us who continue to be misdiagnosed or who get no answers at all, the postponement can be life-threatening indeed.

If you feel that your doctor is not listening and your instinct is telling you that something more is going on within your body, don't be afraid to ask about other tests. You can also bring in a concise hand-written list of symptoms with stated concerns and DEMAND that it be put into your medical records, as part of your records. Make sure to date and sign the list. Then, it is recorded, officially, and the discussions about your state of health and condition at the appointment, from your point of view, is completely included. You have the right to add your own notes about your symptoms. So often, a patient will be describing the symptoms of their condition and if someone looks at the chart and puts it together, they might get on the right track.

Before my Addison's diagnosis, I had written one of these notes in bullet-form. I added strange symptoms, such as my overwhelming and abnormal craving for V8 juice and the sensations of being very unwell as the V8 juice ran out of my system (my body's demand for salt to help balance plummeting blood pressure). I felt as though I were walking against resistance, as if I were moving through mud. My body remained very exhausted, yet I was not "sleepy." These symptoms and more were part of my list. Now, when doctors go back and see the list, they are practically appalled because all of the symptoms were a clear indication of Addison's disease. Too many were searching ONLY for the all-mighty pigmentation change, but I had it minimally, without much notice. Turns out, it is not a great marker, even for typical Primary Addison's patients.

I encourage you to keep noting all of your symptoms, regardless of your condition. Don't be made to feel selfish or ridiculous for doing the most basic task in life...taking care of your health. All other tasks depend on that one task. Your health IS the foundation of your existence. If you have a child with symptoms, it is a difficult job, but also note the foods that they absolutely crave and the things they shun, their activity schedule, agitation level and sleep habits may be good to note as well. Being a Medical Detective is not the easiest involuntary position to hold, but sometimes we do not have a choice.

If you are looking for support - not just with Addison's/adrenal insufficiency, but with any overwhelming medical condition, then reach out to others who have been down similar roads. Those who have suffered with major illnesses, regardless of the illness, can still forge a common bond. Having physical limitations and psychological effects from major illness can be understood by many. At this point in my life, in a crowd, I can spot the person who is seriously ill just by the look in their eyes. I've also been in that position of having someone nearly charge my direction because they were too in-tuned to my subtle outward signs of serious illness that I thought were well hidden. You learn to read people's eyes once you have repeatedly seen your own during times of great illness.

However, finding someone to understand your particular condition with its unique symptoms and challenges might be more difficult; it is harder to deal with a condition when there is no one with similarities to be found. That can be a lonely place. Sadly, the search for a support system can be hindered by the rarity of a disease. In those cases, the best route might be to take the second best option and connect with people who understand serious health issues and the suffering it entails. Connecting with someone who doesn't have compassion or is unable to relate to health battles might not be beneficial. Connections with people who can help open your mind to certain topics related to health issues and with those who acknowledge the dark side of suffering, but also provide hope and encouragement for a better day might provide a realistic touchstone. Others might be healthy, but connected to you on a higher level, such as a family member and they are a most valuable branch to your personal support system because they hurt when you hurt.

For those of you who aren't from Texas, who are not fond of football or who prefer a competing team/university - we are still connected because we ALL can understand the depth of the following: When writing this entry and with last Sunday's Super Bowl still on my mind, I began to think more deeply about our support systems. One place where a strong support system is clearly evident is at Kyle Field during an Aggie game, but it goes further than the eye can see. Texas A&M has a long-standing tradition of honoring its "TWELFTH MAN" which began in 1922 during a fierce football game. The Aggies were battle-worn during the game, so the coach called a basketball player and squad man (and former football player) down from the press box where he had been helping reporters identify players on the field. This young man was in his regular clothes, as a fan and supporter of his football team. The coach called young E. King Gill to get prepared to play ball, so he enthusiastically ran down the stands, through the crowd, he suited up and stood ready throughout the rest of the game on the sidelines for a chance to do his part on the field. In the end, A&M finally won, 22-14 while this young man who had been pulled from the crowd, remained the last man standing on the sidelines for the Aggies. His eagerness to be of service, his diligent readiness by standing the entire time will forever be memorable. Gill was quoted as saying, "I wish that I could say that I went in and ran for the winning touchdown, but I did not. I simply stood by in case my team needed me." The Aggie football team honored Gill's willingness to serve and from then on, Gill became known as the "Twelfth Man." Eventually, Gill and the 12th Man title began to represent the ideals of the entire student body.

Today, when you see the Aggies play, you'll fully understand the passion during an Aggie game. You do not have to be an Aggie fan to be respectful of and to be personally touched by this spirit of support. Each of us has a 12th Man residing within us. In fact, this ideal reaches well beyond football. Today, as the Aggies play a game at Kyle Field, you can see the that one side of the stadium is dedicated ONLY for Texas A&M students who STAND during the ENTIRE game. These students are devoted to standing; united as the "12th Man" and this dedication is so fierce that you will not find seats in the student section. No student would lightly betray the spirit of the 12th Man. Every time I see the student section at Texas A&M during a game, whether in person or by television, I am brought to tears as they take ready action, standing as one, just like Gill did in 1922.

This true story speaks to me on a profound level because you might be suffering, but even having one person by your side standing ready to help can be a powerful presence in your life. Who is your 12th Man? Maybe you're blessed enough to have an entire section rooting for you through the good and bad days, but it only takes one strong, determined person on the sidelines to make a significant difference. Maybe your 12th Man is an online support group, a neighbor or an old friend. Make sure you take time to honor the ones in your life who embrace the spirit of the 12th Man. Do your part to be that 12th Man when another person is in need, even if it means you are not called to action, but merely need to show support by standing ready and wanting to do good. I hope this 12th Man historical recollection will help you to see a support system in a different way and to fully realize the powerful potential of one person.

My girls at an Aggie game!


  1. Hi Lana!
    it is really amazing how much a support system can make you feel more in control and ready to deal with disease. Besides having a wonderful mom and sweet boyfriend who I know are going along with me every step, I also have other family members and friends and an online community to rely on.

    It's so wonderful to have people to connect with like you, and others on forums and boards to talk to about symptoms and experiences. The advice I've gotten has been life changing for me. I didn't know anything about the different replacement meds until several months after I was diagnosed. I would have probably still worried about managing illnesses if I hadn't read other people's suggestions on stress dosing.

    There is one aspect of connecting online with others facing addison's that I've had to come to terms with. That is that people who need help are going to seek it, and those that are currently struggling speak up more. At first everyone's stories of difficult times scared me. Then I realized that the people who are the most stable don't need internet boards and forums as much as those who are struggling.

    I've come to a place where I'm taking much less medicine than when I was diagnosed, my labs are stable and I feel pretty good. I still check in with my online community, but I try and remind myself that everyone's situation is different. It's fun now to offer advice to others who are struggling with just being diagnosed, and keep up with the latest news.

    What was it like for you when you were first diagnosed? Did you find people to connect with that also had Addison's? I don't know what I would have done without the internet. :) I hope you're doing well!

  2. Suzanna,

    Your comment held INCREDIBLE words of wisdom. I had a very similar experience; the blogging, etc., was initially very scary. I had many people contacting me and they had stories that could break a heart, but it was so important to soak in each one. Each story has been greatly informative and touching. Then, I also saw great stories of encouragement and hope along with many personal experiences with Addison's/Adrenal Insufficiency similar to mine, many miraculously overcoming tremendous odds. Still, I always knew that it is like a lottery, none of us can take the good days forgranted.

    But, after blogging the first couple of months, I realized that my own account of the medical diagnosis/maintenance treatment was so challenging, yet MANY COULD RELATE. You are so very right about the struggle correlating to the online connections --- when we struggle, we seem to reach other further. However, you are established, experienced with this disease and it is wonderful to also have accounts that show the medicine dosage being reduced and your own personal support system strongly in place. Helping those newly diagnosed is the highest honor...helping to link them to other real people with Addison's/Adrenal Insufficiency is so important.

    As for your questions about my diagnosis...I am going to write a blog to try to answer those for you. I'll mention you so you'll know it is in response to your particular questions. I'd love to know the same about you and your diagnosis.

    Your blog is so refreshing and always brings a smile to my face. I love your layout and the interesting things you post. Keep sharing!!! :-)

    The best to you ALWAYS! Lana C.

  3. Hi Lana, I found the link to your blog on the Addison Village website. Glad I found you, I have never found any Addisonian Bloggers. I will be back and read all your older posts.

  4. Hey Mo!! I find the Addison Village website to be very helpful. In fact, I just read a TON of old comments on the website that were a couple of years old because everything is so interesting. I wrote down a few things that people wrote --- some of the comments got me to thinking on a deep level. Some things resonate so deeply...

    I write mostly about my personal experience with Addison's/Adrenal Insufficiency because I had felt so alone for so long that I hoped that by sharing others would know that there are people out there who understand. Even if all of our experiences are not the same, so many of us with this condition have great struggles, it means a lot for me to reach out at this time because I was not emotionally able to do so for too long. At the time I had been diagnosed, Addison's/Adrenal Insufficiency was sorely left out of the internet forum. The little info that was out there at that time was very brief and dry. Thanks to sites like the Addison Village website, we are growing more comfortable and more knowledgeable with our medical status and the physical/emotional symptoms that go with it. I'll look for you when I'm at the Village and thanks for reading!!!!

    Lana :-)


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