I am proud to introduce you to Jackie, a lifelong friend who has supported me from a (now) long distance through losing Violet. Her regular messages to check up on us and send her love buoyed me through difficult days. The vintage candle holder with a violet on it that purchased for us sits on Violet's shelf. Now I'd like to allow Jackie the opportunity to explain in depth the struggles she's encountered with Hemiplegic Migraines. (Note: This link is for familial HMs, but Jackie's case is sporadic with no genetic link).
Thanks so much for being willing to share your story, Jackie. Can you start by explaining how we know each other?
We know each other from Kindergarten (Mrs. Staruch's class) and our Daisy troop. That's the earliest that I remember anyway.
You have won the award for the person I've known the longest who has been featured as a Show & Tell! Jamie Steele is a close second. Here is a picture of us together with our kindergarten class! I'm the first one on the left in the row with the chairs and you're the last one on the right in the same row!
What is the most important thing we should know about you?
I think the most important thing you should know about me is that I'm happy! Despite any dark clouds that I've faced, I can always get to that place where I find the silver lining. That's my choice, my process. It doesn't diminish the sadness, grief, emptiness, etc. that I've felt, but it helps pull me through. It's too easy to get lost in the darkness and if you're not looking for some light, you'll never get out. I'm happy, that's what you should know...despite everything, I AM HAPPY!!
I am so glad you clarified that, because you looked sad in kindergarten! Tell us who you share your life with, please.
The simple answer is, I share my life with my BFF Bryan (aka husband) and our 3 APBTs and 2 Treeing Walker Coonhounds. The longer answer also includes my momma, my bro and his family, and an awesomely close extended family.
Handling being "sick" with positivity is a combination of my own will, being surrounded with people who are unconditionally supportive, and the acknowledgment that this could've played out far worse. I struggled because I didn't want to be "sick." Going through every day feeling good and being capable are so ingrained in (most) of our lives that we really do take it for granted. When that starts to slip away, beyond your control, it's terrifying. The only thing I can control is how I handle it.
Admittedly, that's easier to do because I have some amazing people in my life- my momma, some amazing friends (esp. Chandra and Alicia) and my extended family who all help me and just take me as I am. More than anything though, I have Bryan. My heart explodes when I think of how supportive and devoted he is. From the first hospitalization (as a stroke patient) to this day he's never wavered, not once. I'll never forget, when I was laying there, unable to move my right side, face contorted, extremely slurred speech, tears running down my cheeks and he was holding my hand. I struggled to ask him, "what if this is me now, what if I don't get back to normal?" (at this point they weren't sure what my diagnosis/prognosis was) He answered simply, "I'll love you more." And he has. Even the nurses were impressed, asking if he had any brothers!!
Wow, you have an awesome guy there! It made me tear up to hear about how incredibly sweet he is to you, but you deserve it! I can relate to having a strong partner to help get you through a difficult life altering event. It makes a world of difference and it's scary to think where we might be without that support.
How is your HM different from when it first started? How have you gotten your health to where you are today?
Now that I have a diagnosis, I can tell you that my journey first started about 7 years ago when I began having regular migraines. Each year they just progressed until finally, I would become so violently ill that I would have to be hospitalized to prevent dehydration. I would also be given morphine or Demerol intravenously to deal with the pain. Then in March of last year, I had my first HM and it's just been ongoing ever since. In the midst of all of this, I got a few blood clots that led to another diagnosis of Factor V Leiden. Eventually I was also diagnosed with Interstitial Cystitis and chronic Gastritis as well. One thing that led me to where I am today is trusting my body and ditching my first PCP. I had been with him since I was 14 years old, but when my MRI came back negative (for MS) he cast me off as if I was crazy or an addict. It was infuriating, but I moved on and that's made all the difference.
How is your HM different from when it first started? How have you gotten your health to where you are today?
Now that I have a diagnosis, I can tell you that my journey first started about 7 years ago when I began having regular migraines. Each year they just progressed until finally, I would become so violently ill that I would have to be hospitalized to prevent dehydration. I would also be given morphine or Demerol intravenously to deal with the pain. Then in March of last year, I had my first HM and it's just been ongoing ever since. In the midst of all of this, I got a few blood clots that led to another diagnosis of Factor V Leiden. Eventually I was also diagnosed with Interstitial Cystitis and chronic Gastritis as well. One thing that led me to where I am today is trusting my body and ditching my first PCP. I had been with him since I was 14 years old, but when my MRI came back negative (for MS) he cast me off as if I was crazy or an addict. It was infuriating, but I moved on and that's made all the difference.
Ideally, how do you see your diagnosis in 5 years? 10 years? How do you and the doctors plan to accomplish this?
Unfortunately, Hemiplegic Migraines are not incredibly well understood. There is no definitive cause (not everyone has the gene), no definitive treatment, and no two cases are alike. I'm an extreme case, I have HM episodes nearly everyday. So far, nothing has slowed them down. It's basically trial and error with different meds, switching up my diet, paying attention to my triggers, and having my team of doctors (I see 5 regularly) work together to coordinate everything. It's something that really has to be taken one day at a time for me. So I'll be happy if in 5-10 years, all of my disorders have some semblance of control and I regain something of a "normal" life. That's all I can hope for.
What inspires you about outreach and educating others regarding HM?
I see education and outreach as being multi-dimensional - helping raise awareness that the disease exists, helping new sufferers understand what's happening to them, and to increase research prospects. From an awareness stand point, I've realized that most people have never even heard of Hemiplegic Migraines unless they know someone who is affected by them. Even I (someone who had suffered from excruciatingly painful and chronic "normal" migraines) never knew they could get worse until I had my first HM. This can be very frustrating because so many people associate the word "migraine" with a headache and that's just plain wrong. Migraines are emerging as their own neurological disease and cause so much more than head pain, which is especially evident in HMs. People who loosely and erroneously use the term "migraine" are devaluing the word and creating a certain stigma against true sufferers. By creating awareness, we're also helping new sufferers and their families come to grips with what is actually happening. The onset of this disease is incredibly frightening because it can very closely resemble a stroke. Even after all of the testing is done to rule out other causes, believing that what's happened is the result of a migraine can be incredibly difficult when you've never heard of it before. That was absolutely the case for me and my family. Heck, even some of my doctors (who were knowledgeable about HM) had a hard time resigning my illness to HM because the being wrong could have irreparable consequences.
What are your challenges ?
The biggest challenge that I've faced since my diagnosis is learning to accept that I've lost a great deal of my independence. I'm at the mercy of the disease. Will I have a good day? A bad day? A few good hours? Will I be mobile? Will my words make sense or will I spat out gibberish? It's not up to me and that's very frustrating. I've needed to rely on others so much more now than I ever have and if you know me, then you know I do NOT like to ask for help.
The biggest challenge that I've faced since my diagnosis is learning to accept that I've lost a great deal of my independence. I'm at the mercy of the disease. Will I have a good day? A bad day? A few good hours? Will I be mobile? Will my words make sense or will I spat out gibberish? It's not up to me and that's very frustrating. I've needed to rely on others so much more now than I ever have and if you know me, then you know I do NOT like to ask for help.
Something else that's been hard is being in public while I'm having my "episodes." My appearance is altered- my right arm curls up, my face "droops," my eye(s) close up, my speech slurs, and walking is sometimes difficult. How pronounced these features are is dependent upon the severity of each individual episode, as are people's reactions. It's been eye-opening to say the least, but I'm slowly adjusting!
 |
| The beginning of an HM |
The final challenge I would like to remark on is dealing with other people's perceptions. I've learned that some people can be incredibly negative and critical of a situation they know nothing about and that's such a sad realization. So really, I just wanted to remind everyone that we don't always know or understand another person's struggle, but compassion does go a long way!!
Oh, that's so true. After we got Violet's diagnosis, I had a particularly difficult day with an unpleasant stranger our in public. It was hard enough to be out and about, let alone dealing with someone's (totally unrelated) rudeness. I remember wishing everyone would walk around with what we were struggling with written on our shirts. So what knowledge and advice would you wish to give our readers about HM?
The best advice I can give regarding HM is to take a second and look it up and read about it for yourself, especially if you or a loved one have regular migraines! A great place to start is the Hemiplegic Migraine Foundation. They have a website and a Facebook page with information, associated links, and (most importantly) a community where you can talk to other members. I've found that the community aspect of this has been empowering in so many ways and I'm so grateful that this group of individuals found each other and decided to create this organization. Before them there was nothing to link us all together and they're really paving the way for the rest of us. It's a great resource for HM, but could also be beneficial to someone with any form of migraine, neurological disease, or auto-immune disease because some of these things do overlap. You never know what you might find, or who you might relate to!
Yes, community is so important when you are struggling! Who else inspires you and why?
Who inspires me? Well, truthfully, a lot of people do. I see people all of the time in the hospitals and doctors offices I visit that make me grateful for my condition and everything it's not. I'll often meet someone who's suffering from something that maybe doesn't have a very good outcome, or who's treatment is as equally painful as the disease they're battling. Then I feel guilty for ever being angry or upset with my situation. A good example is when I was visiting my Oncologist and needed some meds injected. He told me to go into the back room and have a seat until the nurse came. Walking back, I was completely freaking out at the idea of having needle after needle shoved into my stomach, leg and who knows where else! I started down the hall towards the back, feeling generally crappy that this was how I was spending my day, and then I turned the corner. The room he sent me back to was for Chemo treatment. I felt sheepish as I took the only open seat, almost like a fraud. All of the other patients, their company, and the nurses were talking, even laughing sometimes. Everyone was said hello to me with a smile and welcomed me into the conversation while I waited. They got a huge kick out of the doctor making me go into the bathroom to get some of the shots too (so I didn't have to lift my shirt in front of everyone!) and all bid me farewell when I was done. I think more than any, that visit and that group of people, changed my outlook for the better. I can live with this disease, I can LIVE with it!
What makes you so beautiful, Jackie, is HOW you are living with it. Thank you so much for sharing your story with our readers!
---
The best advice I can give regarding HM is to take a second and look it up and read about it for yourself, especially if you or a loved one have regular migraines! A great place to start is the Hemiplegic Migraine Foundation. They have a website and a Facebook page with information, associated links, and (most importantly) a community where you can talk to other members. I've found that the community aspect of this has been empowering in so many ways and I'm so grateful that this group of individuals found each other and decided to create this organization. Before them there was nothing to link us all together and they're really paving the way for the rest of us. It's a great resource for HM, but could also be beneficial to someone with any form of migraine, neurological disease, or auto-immune disease because some of these things do overlap. You never know what you might find, or who you might relate to!
Yes, community is so important when you are struggling! Who else inspires you and why?
Who inspires me? Well, truthfully, a lot of people do. I see people all of the time in the hospitals and doctors offices I visit that make me grateful for my condition and everything it's not. I'll often meet someone who's suffering from something that maybe doesn't have a very good outcome, or who's treatment is as equally painful as the disease they're battling. Then I feel guilty for ever being angry or upset with my situation. A good example is when I was visiting my Oncologist and needed some meds injected. He told me to go into the back room and have a seat until the nurse came. Walking back, I was completely freaking out at the idea of having needle after needle shoved into my stomach, leg and who knows where else! I started down the hall towards the back, feeling generally crappy that this was how I was spending my day, and then I turned the corner. The room he sent me back to was for Chemo treatment. I felt sheepish as I took the only open seat, almost like a fraud. All of the other patients, their company, and the nurses were talking, even laughing sometimes. Everyone was said hello to me with a smile and welcomed me into the conversation while I waited. They got a huge kick out of the doctor making me go into the bathroom to get some of the shots too (so I didn't have to lift my shirt in front of everyone!) and all bid me farewell when I was done. I think more than any, that visit and that group of people, changed my outlook for the better. I can live with this disease, I can LIVE with it!
What makes you so beautiful, Jackie, is HOW you are living with it. Thank you so much for sharing your story with our readers!
Read more about our Show & Tell feature.
Thank you Jackie! I think you are pretty inspiring yourself! Thank you from a fellow Hmer! ~Shannon
ReplyDeleteThank you Shannon! Knowing other HMer's is healing :)
ReplyDelete