Yesterday was an amazing day. I was out of the house, I cooked, I did a news interview for the hemiplegic migraine petition, and I had a very low pain level most of the day. Today is definitely a new day. I’m not so lucky today. BUT I’m not so bad either. I figure today can be considered a mild HM day. Woke up with mild versions of everything on my Top 15. Loaded up on my vitamins and will stay diligent with doing as little as possible today.
I have chronic HM (everyday for about 3 weeks a month) so to have good days is a treat. It’s what I look forward to after weeks of laying in bed, having mild to severe pain levels, and not feeling like myself. I always know, in the back of my mind, that it’s going to start all over again after the good days end. I have about 5 to 6 consecutive good days a month. That’s my life.
It’s a pattern that has formed over time. I’ve noticed this pattern take shape over the last few years, though, I can go months to a year with low pain and very mild symptoms. These are the years when I can work and go to school. I’m not in that timeframe right now, in fact, that time ended in June this year. I’ve relapsed and I just have to push through until the next remission. Have chronic HM? Notice a similar pattern? I’m curious to know if you have the same issue.
When I start to feel better I usually think to myself, “I forgot what it’s like to have no pain!” On the other side of that, when I start to feel bad again, I think to myself, “Ugh, I almost forgot what it feels like to feel so much pain.” It’s a daily roller coaster I didn’t choose to climb into, but I’m definitely strapped in for the ride. I have to take each incline and decline as they come and smile despite whether I’m up or down…or barreling to the bottom at 72 mph. I do have coaster partners, they’re awesome. My coaster partners consist of my husband and kids, my parents and siblings, my aunts and uncles, my grandparents, and my close friends. While all of these people are near and dear to my heart, the coaster partners I most relate to are my HM friends I’ve met online over the last 13 years. There’s just no group like them. Most have HM and some have other types of migraines and seizures. Within this amazing group of people are my friends at the International Hemiplegic Migraine Foundation (IHMF).
When the IHMF was first formed I was on the Board of Directors as the Technology Director (then called the Hemiplegic Migraine Foundation (HMF)). I wasn’t too involved as far as the structuring of the foundation goes, but I handled most of the graphics, registering the website, designing the website, managing emails, streamlining the Facebook page and handling Facebook messages. A few years later I would go on to become the interim President of HMF while we searched for someone with our same vision and values. This “interim” period lasted about a year. It was a great year, but I needed time away. Being President of a large support group is very demanding, even with the great support team we built. That year we grew the HMF through awareness campaigns and word-of-mouth across the world. It was awesome! But I was wearing down emotionally and physically. I was having more and more HMs as time went by. As with any large group, there’s moments of struggle and moments of strength. A roller coaster all its own. It was time for me to step down so I could concentrate on getting healthy again. I left the HMF in the very capable hands of a great, new President, Karen. She’s an amazing woman and is doing an outstanding job with the IHMF. She has a talented team of admins who run the page with class and understanding. I tip my imaginary hat off to you all! When Karen took the reigns, the name change occurred. We were no longer just a United States group, we had grown into several countries around the world – It’s amazing! I’m still a member of the IHMF and share their awareness information as much as possible. This is why you will see me write about this group often in my posts and see my shared posts on Facebook and Twitter. They put out great information and uplifting memes.
ANYWAY, I went off on a little history lesson there. Ha! Back to the story….This back and forth is frustrating and tiring and I’m working pretty hard to steady my path. I am eating 90% organic, eating off a food list tailored to lower inflammation (and sticking to that at about 90%), take supplements as needed according to blood tests, and drink all the healthy electrolyte drinks and greens. I know that if I can get my body in prime condition by loosing weight in a healthy way and rid my body of inflammation and toxins (I have lots) I will be able to fight off disease and infections so much easier to trigger less hemiplegic migraines and hopefully experience less seizures too.
I realize HM is a disease at the cellular, genetic level rather than from inflammation due to lifestyle choices, but if I can stop all my unhealthy choices and nourish my body, I can also keep the non-HM/seizure related pain levels down , thus cutting down on the number of HMs I experience. Pain and stress are big HM triggers for me, so a stomach bug, rapid heart rate, or overworking my muscles can bring them on. My current round of HM/seizures has been going on since June and it’s getting harder to stay positive as the months go by. I was hoping to see some results by now, but instead I’m feeling worse the closer to Christmas it becomes. I’m hoping 2017 will not be “rung-in” laying in my bed in the dark. I hope to be out in the living room with my family giving them their first kisses of the year 💋
You know the saying, “It has to get harder before it gets easier,” that’s exactly what is happening. I need to continue the healthy path I’ve set for myself. Tie up those laces, roll up my sleeves, and keep climbing. Ask me in a couple years if I stuck it out and if it’s working!! I was told that because I have a very difficult condition to treat, it may take my body a year or two to fully restore itself. I’m patiently waiting…well maybe not as patient as I’d like to be. I can’t stand green drinks, they’re so…YUCK! I’ll admit, I don’t drink them like I should.
Why should I, you’re wondering? With my HM I sometimes get symptoms that include shortness of breath, breathy speaking (basically a whisper), and my oxygen levels have dipped during the episode in the ER. These green drinks contain chlorella and spirulina, GREAT sources of oxygen for the blood. I realize I can take those in capsule form, BUT I take SO MANY supplements already, but I am still considering it. I’m not getting enough of these since I don’t drink the green drinks daily like I should and I have a tough time with green veggies, raw or cooked. I can tolerate the coconut water, but it’s definitely not my favorite. I cringe at taking Black Seed Oil (BS) and I HATE apple cider vinegar…but I still try to get them down as often as possible…which lately, hasn’t been so possible. I have a strong gag-reflex right now. These are things I do in addition to eating off the BALi Eating Plan. You can read all about what I take and what I follow on my About page. Because if I don’t give you that link I’ll continue to preach to you about healthy eating and supplements!
I don’t take prescription medication on a daily basis. I do have a prescription of Clonazepam to help with my myoclonic seizures when they cluster and don’t stop. Normally, if this doesn’t work, and I’ve already had Haleigh’s Hope, I get packed up and shipped to the ER where I will get IV Dilaudid. That and IV Lorazepam will do the trick…for a little bit. I stopped taking prescription drugs because, frankly, they didn’t work, stopped working, or landed me in the hospital for a week. What luck!
Well, I’ll let you get back to wrapping those Christmas presents! I know this was a longer post than most, but I had a lot to say 😉 Till next time!
Erica Nicole Carrasco is a blogger sharing stories of life with Hemiplegic Migraine and Non-Epileptic Seizures. She takes you on a journey through life’s ups and downs, smiles and frowns with chronic illness.
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