Rare Disease Day

Rare Disease Day

Today, February 28th, is Rare Disease Day. It’s the day to recognize and increase the general public’s awareness for these diseases. Honestly, in the past, I would have given very little thought of this day. Of course, I would have felt awful for the people with these diseases and offered up a prayer for them. And then, I would have moved on with life.

Well, ironically, I have been recently diagnosed with one of those “rare” diseases. This past fall I was admitted into the hospital for stroke-like symptoms. The doctors diagnosed me with a complex migraine causing one-sided numbness and weakness. And that was that. It was about a month before I regained full feeling and could walk normally. Crazy, right?! I spent months (with very little improvement I might add) trying different medications, physical therapy, and seeking opinions from different doctors. This past week I met with a headache specialist, who confidently stated I met all the criteria for Hemiplegic Migraine. It is a rare and severe form of migraine disease. Side effects can include severe headache, one-sided numbness, one-sided weakness or paralysis, balance issues, visual aura, dizziness, nausea/vomiting, sensitivity to light & sound, slurred or stuttered speech, confusion, decreased consciousness, or even coma. It does act similarly to a stroke, but the symptoms are temporary and CT & MRI images are normal. However, HM has been confused with stroke and MS quite often. There are two types of HM: Familial and Sporadic. A person with familial HM meets all the criteria for HM and has a family member who also has been specifically diagnosed with HM. An interesting tidbit: Through research, doctors have discovered gene mutations linked to HM. The subtype of FHM depends on the type of gene mutation. Anyways, a person has sporadic HM when he/she meets all the criteria but does not have a family member with HM. There is no cure for HM. It is treated with both preventive medication (i.e. anti-convulsants, anti-depressants, etc.) and abortive medication (NSAIDs, narcotics, etc.) Please note: Due to contraindications, the migraine medication triptans should be avoided when treating HM. As with any other form of chronic pain, medication and procedures will only accomplish so much. One must learn to manage the pain through lifestyle changes, diet, exercise, yoga/meditation, pain psychology, etc. While these changes won’t take away the pain, they will most likely decrease the pain and the anxiety/stress levels. Life will become brighter as time goes on.

Thank you for taking the time to read this and for spreading the awareness of rare diseases!

Awareness for Hemiplegic Migraines

Enjoy the Moment

Recently I felt the best I had in several months. I had a smile on your face without forcing it and was laughing with ease. I could concentrate on others conversations without constantly monitoring my pain levels. Etc. etc. etc.

I started thinking about what do we do with those moments where you have decreased pain and less symptoms? A life with chronic pain can be an endless roller coaster with climbs, dives, loop-da-loops, and of course corkscrews. We rarely have breathers. Then, when they come, how do we respond? Fear the pain returning? Hurry up and do everything on our “to do” list? Or…

ENJOY THE MOMENT!!!

It’s not worth our time or effort to worry about the pain returning. We can’t know how long the reprieve will last: a few hours, a couple days, or maybe it’s a remission of weeks or even months. We can do our part by being active, changing unhealthy habits, figuring out triggers, etc. But there is still an element of the unknown. Somethings are just out of our control: emergencies, other people’s actions, weather, etc. So just relax and allow yourself to embrace the relief.

And please fight the urge to rush off to do all the errands and projects on you’ve been putting off. (Maybe it’s my A-type personality, but I tend to do this a lot.) Having less pain and more energy feels awesome, right?! But it’s not an invitation to do everything RIGHT NOW. Do what has to be done and then save the rest for a later time. If you push yourself, I guarantee that you’ll end up tired, frustrated, and sometimes in another flare. It’s not worth it!

So, I encourage you to treat those times of relief (no matter how short) as a gift. Appreciate and enjoy them. Don’t fear the future or overdo on tasks. Be in the present and appreciate the moment!

Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain… – Vivian Greene

A New Year

2013 didn’t turn out like anything I expected. It did have it’s wonderful, memorable events: beautiful weddings, cute babies, lots of laughter, exciting travels, new friendships, etc. But there were also many tears, one too many scary moments, angry words, and difficult questions to ask with not many answers. As with any passing year, what should we do with it? Part of me only wants to remember the happy moments and to shove the rest into the closet, never to think about them again. However, we all know that’s not a healthy response. I wrote a post last year about the stages of grief and I truly believe that for each year one should celebrate the happy moments, big & small, but also to grieve the losses. This includes addressing the fears, which might continue into the new year. 2014 has its own unknowns. We can either fear them or accept their existence. I’m not saying that we have to like them but we do have to come to terms these fears & unknowns in order to keep moving forward.

I am slowly learning that the life with chronic pain or with autoimmune diseases comes with many unknowns. We might receive conflicting diagnoses from doctors or just generic diagnoses that leave you in a state of what the heck am I supposed to do with that. I firmly believe that we need to learn how to enjoy the times of remissions, no matter how short, and how to have peace when symptoms worsen or new ones appear. One very important lesson I’ve learned in the past is that there are always new treatments, exercises, skills, etc. which we can try to see whether or not they will ease our symptoms or decrease the pain. I plan on continuing to seek them out this new year and encourage you to do the same.

I’ve never been big on New Year’s resolutions probably because I find them difficult to keep 😛 But I wanted to share a few of mine for 2014 with you (Warning! They are very simple and not at all grandiose.) :

  1. To take one day at a time
  2. To celebrate the small successes
  3. To be gracious and patient with myself on the good days but especially on the ones when symptoms increase or new ones appear
  4. To have an attitude of gratefulness, especially for life’s small gifts

I could wish for you less pain and decreased symptoms this new year. But I would rather hope you have the will to fight for your health each day, to be at peace during the confusing and difficult periods, and find joy in the small, beautiful moments of life.