mybeautifulmigraine

#ChronicMigraine

#ChronicIllness

#SpeakYourMigraine

#PatientsNotAddicts

https://migraine.com/living-migraine/how-do-you-want-to-be-seen/?utm_source=weekly&utm_medium=email&utm_campaign=171122&uuid=214303ba652343e6198e917c6d821132

I just lay in this bed… Exhisting, breathing, hurting.

I want to be Normal. I want to be with and take care of my family. Clean, organize, do home projects. Instead I’m this Sick Thing in their lives. An imperfection, a blemish. The situation is not acceptable; it is beyond ridiculous.

If I didn’t wake up tomorrow… it would just be… okay.

But tomorrow I’ll be better. It must. I will it. The sun will come out and dry up all the rain.🌞 Every migraine ends. It just takes time. Always time. Time I’ll never get back.
“We have done the Impossible, and that’s what makes us Mighty.” (Capt Mal Reynolds)

Halloween has become an important affair for Marc and me. We have a wonderful and fun adult neighborhood party every year and I adore planning couples costumes for us. I spend all year with a plan. The emotional and physical prep is huge the week of. I don’t want my head getting in the way…it’s too important an event for us. It means lots of rest the days leading up to… low stress and lots of rest. 

I actually had a difficult, low level migraine the days before the party and the night of. *Sigh* When we got to the party, I thought I might have to send Marc back home for a triptan for me. But I was able to push the pain out and fill up on prosecco (that lovely drink that doesn’t give me migraines). 

We had a wonderful, wonderful time. We have such cool neighbors and are so grateful to be included in such fun – despite the fact we are old crones compared to 99% of them!!😂 Our kids help with babysitting their littles!

We danced, we drank, we mingled and had great conversations with neighbors new and old. Laughter, smiles, dancing, and costume…so fun.❤️ Makes me feel like a real person!😄 Of course I’m 30lbs overweight but heck. I love spending time at a costume party! Dressing up in costume makes dreams come true!

We didn’t stay really late. I think we were home and I was in bed by 12-12:30. Happy. Maxalt required. The next day, was lost to recovering. In this Chronic life, there is no pleasure without “payment.”

Our fun:

This is a story of an incident of a paradigm shift. This is a story of the shame I carry as a chronically ill person. I live in fear of judgment based on my experiences, both as a nurse and as a patient. This story is very important to me and it is 100% factual. But as I was about to publish, I found I couldn’t go through with it. Too much stigma associated with the labels, the words. And so I’ve retracted the names. I don’t know how I feel about my decision. So much shaming. So much stigma.
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…you’re Alone. Normal people around you don’t get it, have never experienced anything like it, have small minds & piss poor empathy skills. There’s really no one you can trust. 
“Just put your head down, eat your pizza, and keep walking.” (Advice from a New Yorker on walking through Manhattan)

Photo credit Kat Shaper Photography, Austin TX

Botox treatment, 31-36 injections in my forehead, sides of head, back of head, neck and jaw every 3 months, has been the most successful migraine preventative I have ever been on. It reduces my migraine’s legths and severity and makes them easier to treat with medication. I estimate it improves my quality of life by 40%. When Botox is “running out” in my head by week 8-10, I usually have a significant worsening of migraines. Some rounds of treatment are better than others. But I feel I would be lost without the therapy. It is performed by my neurologist (not ever a cosmetic procedure) and is not the first line of preventative treatment for Chronic Migraine. Usually one cannot get insuramce approval for Botox without first failing multiple oral preventative medications.

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