An awesome blog post on how the interplay of hormones affects migraines! And don’t miss the last part on how relaxation response can benefit your health and overall well-being…
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!
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!
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.) :
- To take one day at a time
- To celebrate the small successes
- To be gracious and patient with myself on the good days but especially on the ones when symptoms increase or new ones appear
- 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.
When it is dark enough, you can see the stars. – Persian Proverb
In life one of the most incredible and beautiful feelings are the ones that we can see and that is smiling. In life I have learned to be positive and take things as it comes by. In the morning when I wake up, I look in the mirror and smile. When I smile I feel like my day is going to go well and it does. I know some people smile physically, but they are hurting on the inside and they try to hide their true feelings with smiling on the outside. I know sometimes smiling can be painful and nobody would know the hurt they are enduring. Trust me, it is normal and we all go through phases in life and things happen in our lives that we least expect, but nothing is as great as a smile. It is contagious and felt by many. It makes the public…
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A few weeks ago, I met with my pain management doctor. I already knew what she was going to say before she gave me the difficult news. Yes, my CRPS/RSD is back (i.e. no longer in remission). I had known it in my gut for a couple weeks. I thought I had the pain under control. I just needed to make some lifestyle adjustments and maybe it would quickly go away again. However, the pain and symptoms grew worse. It was now time to take more aggressive measures. For the rest of the appointment, I was in a state of both denial and acceptance if they can really co-exist. I had enjoyed a good 9-12 months with little to no CRPS/RSD pain. During that period, I made the naive assumption that CRPS/RSD was gone forever or at least wouldn’t return for a couple years. Yes, it is back. I knew it; I just didn’t want to fully admit. I still have flashbacks and nightmares of those couple years with CRPS/RSD pain; I never want to return to that state again. I knew already what the next several weeks would hold for me: multiple doctor visits, several procedures, and the dreaded drug trials.
These past few weeks have been what I expected and yet a few pleasant surprises have occurred. Ironically, I’ve been both in a state of grief and thanksgiving. I met with pain psychologist soon afterwards (Btw, if you don’t have a pain psychologist, I highly recommend you asking your doctor if there’s one in your area. I can’t tell you how much pain psychology has helped me over the past few years.) She was encouraging me and reminding me that I have the tools to work thru this CRPS/RSD flare. I already know what to do so trust myself. However, one thing I’m surprised she didn’t mention is to allow myself to grieve. Yes, I have pain management tools to overcome this flare, which I am very thankful for, but I still need to process the emotional effects of this setback.
I’m sure you are familiar with the 5 Stages of Grief (the Kubler-Ross model):
Until I had chronic pain, I assumed grief only came with the death of a loved one. However, grief comes in many forms: a miscarriage, divorce, loss of job, illness, etc. I remember when I first walked thru the 5 Stages of Grief after being diagnosed with CRPS/RSD. At first, I had a difficult admitting that I was, in fact, grieving. It’s not a pleasant process; however, it is quite healing. Now I’ve accepted that grief is a normal process of human nature to deal with change. I’ve realize now that I have walked thru this process several times over the past couple years. I have developed an interesting analogy of grief, which may or may not be helpful. I remember learning in my college music class “Form and Analysis” that a piece of music has an overall form (i.e. I-IV-V-I) but it also can have that same format occurring throughout the piece on smaller levels. I think this happens also with grief. I might process grief’s 5 stages as quickly as one day. However, I might be working through a larger grief pattern at the same time; one that takes a couple weeks or months. And it’s okay. I will most likely be better for it.
Over the past couple years, I’ve learned the importance of thanksgiving, especially for those living with chronic pain. It helps you fight depression and keep a positive outlook on life. However, during the past couple weeks, it has been a constant theme for me. Maybe I wasn’t at the time, but now I am so thankful for those months of remission. I wasn’t 100% healthy during that period; yet I enjoyed those days of lower pain levels and more energy/stamina. I was more active, more involved in things I love, and enjoying life each day. Those were happy months for me. Also, I appreciate what my pain psychologist said: I do have tools to overcome this flare. All those hours of working with my medical team and researching pain management techniques have and will continue to benefit me. I’m not sure how long this flare will last but I am well-equipped. I’ve learned to be thankful for the big and little things in life whether it’s the feeling of spring in the air, a few minutes of solitude, walking without assistance, dark chocolate, support of family and friends, etc.
So I will leave you with a few thoughts: How do you view grief? Have you found yourself in a better place (figuratively) after grieving a loss or difficult change in your life? Also, what are you thankful for today? It can be a small pleasure or a big success. Today I’m thankful for sunshine, coconut tea, and laser acupuncture (I’ll talk about that in a future post). I hope you all have a wonderful weekend; God bless!