Yeah! A Diagnosis. Now what?

Finally, a diagnosis. You may have heard the name of which autoimmune disease your rheumy (a sweet nickname for Rheumatologist) told you. Chances are you have never heard of it before! You probably grabbed a pen and asked for them to spell it for you, too. I know I did.  I still to this day have to double check my spelling for Ankylosing Spondylitis. For the first several months after that diagnosis was added to my smorgasbord of diagnoses, I couldn’t even SAY the auto immune disease name, let alone spell it!

There is a good chance your rheumy started you on a med, most likely the first line of defense medication that your insurance will allow. It’s the first med because it’s the least expensive; and honestly, it’s not the latest med on the market. Because of this, take notes each and every day as to how you feel on it. If you have migraines, notate it. If your stomach is cramping, sick, you can’t keep the med down, or have diarrhea, notate it. I found that a small inexpensive handheld calendar, one that you can find at a dollar store, is very helpful because you can notate on each day how you feel, if there were side effects. It’s easy to forget the specifics and frequency without writing it down.This way, if the side effect profile is too much for you, it’s all documented and your doctor can then request the next med that is allowed on your insurance.  (If you are uninsured or under-insured, I will address some things I’ve learned in a subsequent post.)

Whether or not a med was started, I highly encourage that you start a do-over as far as your diet is concerned. I know full well, first hand, how comforting food is when nothing else feels good in your body. However, the comfort food isn’t usually carrots, celery and kale. Usually it’s the ever decadent chocolate, or the crunch and saltiness of chips.  If you are like I was, you have date nights, with a guy named Ben and his best friend Jerry. We hung out on a regular basis for years!

This photo, taken by my friend Jeff Kirlin, was what motivated me to join Weight Watchers. I joined December 22, 2016. I’m in the middle of my two beautiful friends, Laura and Holly.

In the most basic of terms, autoimmune disease is many times the result of inflammation in your body that lends itself to attacking healthy parts of your body. There can absolutely be a genetic predisposition to that happening, and stress compounds that attack mode. One way to pull back the inflammatory response is to lower or completely cut out the inflammatory foods: refined sugars, white bread, and red meat are just a few examples. Rome wasn’t built in a day and trying to change your diet overnight will feel like punishment. For me, joining Weight Watchers started the process. Now, 7 months after joining, my body no longer craves junk, and I don’t wake up with my hands, legs, back and feet in extreme pain from the inflammation in my joints.  A few weeks ago I had a genius idea of buying a package of “snack pack” cookies. I thought they were a good option for me to have available for one of my meds that I must take with food. I didn’t want to be caught without something quick to eat when out and about and needed to take my medicine. Well, eat it quick I did. That entire box of snack packs was gone in a weekend; and I woke up in more pain than they had been in for months.  That was all of the scientific research that I needed to nix refined sugar, almost entirely.

July 2017, 7 months after joining Weight Watchers. I was finally finally proud to dress up with my girlfriends for a Rod Stewart Waterfront Concert in Bangor, Maine.

A great tool for researching your new diagnosis is finding Facebook groups of people who also have the same diagnosis. There are often many groups to choose from. Once in the groups, take your time in reading the posts to make sure the tone of the group is the right fit for you. I find most of the groups are positive and supportive. Some have more rules than others. Some groups don’t allow you to share your personal blogs, for example and I can never remember which one. So, I er on the side of caution and just drop out of the ones that don’t allow it. It seems that Facebook groups have taken over support groups in person, so it’s a good place to turn.

I have learned an immense amount of information about my autoimmune disease that is extremely rare, LEMS, through two Facebook groups. My Neurologist is happy that I find the information and some of what I have learned  led to me being on a trial med through Jacobus Pharmaceuticals. LEMS is so rare that the prevalence is only 3.4 people per million! 60% of those cases are caused by an underlying tumor; and less than half are caused by an autoimmune response. I had the full body CT scan to verify no tumor, which my providers were quite sure of beforehand with my autoimmune history. Thankfully, my LEMS was autoimmune. I’ve always been an over achiever, and my immune system is no different! I’m not sure how I would have processed everything. I can guarantee you I wouldn’t be doing as well as I am now without them educating me (and thus my neurologist) about the drug trial and the other treatments available. 

You may feel overwhelmed, nervous, or completely stressed over your new diagnosis. The relief that you felt when your rheumy told you why you have felt like crap for so long will alternate between concern over med side effects, finances, insurance concerns, job concerns and the challenge of helping your family and friends to understand what’s going on with you. Every day will be a new day. Some will bring challenges and some will bring relief. Find laughter in the little things and take in the beauty of nature around you. Always remember, no matter how tough things get, the sun will rise again tomorrow.

Dawn DeBois

About Dawn DeBois

Florida born and Maine grown, my life has been atypical. My childhood was full of loss and severe physical pain. Both emotional and physical stress during childhood has been found to contribute to autoimmune disease. My first autoimmune diagnosis was at the age of 28, which has led to juggling multiple autoimmune diseases (Hashimoto’s, Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis and most recently LEMS- Lambert Eaton Myasthenic Syndrome). I am officially now classified as having “Multiple Autoimmune Syndrome.” You know what they say, go big or go home!