Living with pain haze, brain fog, mommy brain and Migraine

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Sometimes, things just look a bit hazy

 

Call it mommy brain. Call it pain haze. When I have a migraine I’m a bit fuzzy to say the least.

I got a migraine after the 4th of July (which was not a surprise, I get a migraine at every holiday) that lasted a few days and was severe. I spent the remainder of my week recovering. So when I woke up again with another migraine I was totally frustrated.

My husband had left for a trip before I woke up and I went directly into survival mode. I took my meds, iced and drank coffee before my kids got up. By the time they got up, I was able to put on a happy face and told myself I was going to make it through the day and to keep on fighting. I talk to myself and my migraines a lot!

So I decided to continue on with what I planned for the day and started addressing thank you notes that I had written for my daughter’s birthday. As I did this, I responded to a wedding invitation. The invitation already had a stamp on it and at this point I realized I had addressed my envelopes backwards. I had reversed the stamp and return address and would not have noticed had I not seen an example of the correct way to address an envelope. Uh, how frustrating.

Was it the end of the world, of course not. It was just an honest mistake but it frustrated me. When I was on preventatives I made mistakes like this a lot (See why I don’t take preventatives). Now that I’m not, I try to keep my head as clear as possible but controlling the pain is a priority. I have many friends who do not suffer and tell me they are the same way with “mommy brain”.

Call it what you will, it’s mommy brain, pain haze, migraine hangover, busy life and fogginess. The problem with suffering is that I never know what’s normal. What is normal anyways? Knowing how to address an envelope is normal, so maybe I’m a bit hazy. I guess I could be called worse.

What have you done in a pain haze?

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Disney World tragedy and lessons I learned

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This morning I awoke to read that a toddler had been dragged into the water by an alligator from a  Disney World hotel.  I am so sickened by this.  I am so sickened by so much in the news, in fact, that reading has been a daily painful experience.  This world is a scary, sick and unpredictable place.  Hold your loved ones close!  I pray for so many today for so many reasons.

When I went to Disney World last year, I had a profound experience having the good, the bad and a migraine.  Please read my 3 piece series on Disney World and all that I learned and came away with.

Disney World

Disney world: the good

Disney world: the bad

Disney World: my migraine

 

 

Invisible Illness Awareness

In honor of Invisible Illness Awareness week I have answered questions about myself to teach others about what they don’t see.   Please feel free to copy and paste the template to answer the questions yourself.  Pass along my post to help spread awareness.  A lot of people have a lot to learn and this is a quick list of things people may learn.  I think you’ll be surprised who responds and those who suffer in silence.  Please check out their website to see what you can do. Invisible illness

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine
2. I was not diagnosed until years after my first migraine.
3.  I had symptoms since: probably the day I was born or soon there after. I had my first migraine when I was 5 that I remember.
4. The biggest adjustment I’ve had to make is: being prepared for it to hit at any moment, anywhere.
5. Most people assume: that it’s just a headache
6. The hardest part about mornings are: waking up. I have a headache everyday when I wake up and the direction of my pain level dictates my day
7. My favorite medical TV show is: Gray’s Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: going to sleep. I love to sleep to escape the pain but my eyes flutter open from the pain and it takes me a while to fall asleep.
10. Each day I take the least amount of pills that I can & vitamins in order to survive.
11. Regarding alternative treatments I: do as many as possible to hopefully cut back on meds. They help minimally, but I do whatever I can to help myself naturally.
12. If I had to choose between an invisible illness or visible I would choose: no disease. It is actually helpful at times that I can hide my pain but also leaves me vulnerable to judgment. I don’t know how it feels to have a visible disease and I’m sure that just as many problems arise with it.
13. Regarding working and career: I used to be a special education teacher and the stress triggered me into missing many days and was criticized for having my own special needs. I now stay at home with my children which allows me flexibility but no breaks. I literally live, eat, sleep and breathe my children and even if I’m crazy sick, they are still my responsibility.
14. People would be surprised to know: that I am chronically ill. I hide it really well (the best that I can) so my children and friends don’t worry about me.
15. The hardest thing to accept about my new reality has been: it’s not a new reality. I’ve lived with it my entire life but have never gotten used to it. It has changed as often as I have since I was 5 and it is constantly a trial and error to give me some kind of normalcy.
16. Something I never thought I could do with my illness that I did was: go to college. I say this in hindsight because I was nieve in thinking that I would be fine when I left from my family and doctors. I have read how so many people have had to drop out of school and how it affects their education. From hearing others stories I am most greatful that I was able to be educated and enjoy college life at the level that I did.
17. The commercials about my illness: make me roll my eyes and give sarcastic comments.
18. Something I really miss doing since I was diagnosed is: being carefree. I don’t remember a time that I didn’t have migraines and I live each day thinking and dealing with them. To not have to think about my chronic condition would allow me to live much differently.
19. It was really hard to have to give up: drinking, foods, nights out, events etc. I miss out on a lot and even more if I’m not cautious
20. A new hobby I have taken up since my diagnosis is: blogging. I find it meaningful to help others and in return learn about myself and sort through what I’m dealing with.
21. If I could have one day of feeling normal again I would: (see) https://mymigrainelife.wordpress.com/2014/06/02/what-would-you-do-if-your-dream-of-a-pain-and-a-completely-symptom-free-life-came-true/
22. My illness has taught me: that I’m stronger than I think and that giving up is not an option
23. Want to know a secret? One thing people say that gets under my skin is: it can’t be that bad.
24. But I love it when people: say they enjoy my blog. I feel like I’m making a difference with positive feedback.
25. My favorite motto, scripture, quote that gets me through tough times is: live like  you are dying.  I never know when I’ll be locked in my cold dark room and I do not take low pain days for granted.
26. When someone is diagnosed I’d like to tell them: I’m sorry. I’m truly sorry.
27. Something that has surprised me about living with an illness is: how many aspects of my life that it effects.
28. The nicest thing someone did for me when I wasn’t feeling well was: a lot. I am surrounded by love and have an army of people who fight for me. I feel so sorry for people who are unsupported and alone with this already isolating disease.  Love won’t cure me, but it has healed me.
29. I’m involved with Invisible Illness Week because: bringing awareness is important.
30. The fact that you read this list makes me feel: special. There is a lot to read and do and the fact that you read about me is special. Thank you for reading.

Throwback Thursday “fear as a mother”

Fear as a mother & migraine sufferer

This week I got a call from my daughter’s school saying she had hit her head on her teacher’s desk. I immediately called the doctor while driving to pick her up. She turns 5 next month and I got my first migraine when I was 5. I am always fearful & observing her for signs of migraine. Thank God she was ok & playing like normal by the time we got home from the doctor.   This reminded me of my “fear as a mother and migraine sufferer” post.

So for throwback Thursday please read about my fears & tell me about yours.

https://mymigrainelife.wordpress.com/2014/06/10/fear-as-a-mother-and-migraine-sufferer/

Help Hannah get a service dog

Help Hannah Get a Service Dog http://www.gofundme.com/n5pjpo

When I first started blogging I wanted a creative outlet that allowed me to tell my story in order to better understand myself and hopefully teach, reach, and help others.  It’s always been easier for me to give help than receive it and when I ran across the Shelton’s story, I jumped at the chance to spread the word about this family.  I relate to this family a lot and know that I am not the only one who will feel this way.  I am a lifetime chronic migraine sufferer along with being a dog lover and a mother. If you’ve read my post  about my dog you know that she is part of my treatment.  She is not a trained therapy dog but she understands the cues I give when I’m in migraine mode and supports me emotionally.  Hannah and her family are raising money to get a service/medical alert dog.  Her dog will be trained to read her body chemistry so the dog can alert her that a migraine is going to spike.  When Hannah’s migraines spike she loses feeling from her waist down causing her to fall.  Her falling is obviously very dangerous and frightening for everyone.  Her episodes last anywhere between 10 and 20 minutes and happen somewhere between 8 and 10 times a week.  Along with this comes depression, anxiety, and panic attacks that her dog can also help her cope with.  An alert dog will drastically change her life.   Hannah has suffered from headaches most of her short life but since 2014 she has been hospitalized and in an infusion center for weeks at a time.  Her migraines last more than 72 hours at a time and cause her to vomit violently.  They have yet to find an effective medication to control her attacks.  She is 16 years old and on homebound schooling until the end of the school year.  When the doctor suggested that Hannah get a medical alert/service dog, Carol (her mother) set up a page to help pay for the dog, vet fees before getting the dog, and the travel and stay for the intense training.  Carol has a very close relationship with her daughter and naturally will do anything to stop her suffering and give her the better life that she deserves.   Please go to “Help Hannah Get a Service Dog”  to donate and read more about Hannah’s story.  Even if you are unable to donate, it will be helpful to share the page or my post to spread the word of the Shelton family.  Your donation will help change a girl and her family’s life!

Help Hannah Get a Service Dog

Medication doesn’t work every time in the same way

The thing about migraines is that there is no cure and there is no medicine that works for everyone.  The even crazier thing is, there is not a medicine that works every time even if you are lucky enough to find something that works for you.  It’s constantly a guess and check and experiment game.

When it comes to matters of the brain, it’s hard to keep on top of it.  My entire life I have been on dozens of medicines and sometimes they work, sometimes they don’t.  Or they work then all of a sudden my body changes and it doesn’t.  The game is never ending and I’ve been on the losing end most of the time.

Here’s the most frustrating part…..sometimes everything stops working.  I got home from vacation expecting a migraine from coming from the Caribbean to settle back into a polar vortex.  So I tried to be prepared.  I saw my neurologist the day before we left and got refills on my prescriptions so I could battle when I got home.

The day I got home I filled them and spent $670 dollars.  I almost fainted on the spot!  So I now have had a migraine for 8 days ranging from a 5-9 pain scale at all moments and everything has stopped working!!!!

I have taken everything I can without causing rebound headaches or overdosing and nothing has given me a second of relief. 670 dollars and nothing works! I’m doing everything naturally that I know of also and everything has stopped working.  I threw my son’s birthday party by staggering around with my Headache Hat and sunglasses on while we set up. The party was amazing and my son will never have any idea that his mom woke up with her right eye swollen shut from the pressure and pain.  I hope one day my kids will look back and not see me as weak but see how strong I am to fight.  By about day 4 or 5 the mental fight with my migraine began.

The sadness of missing out on life, the loneliness of laying in bed, the anxiousness of not knowing when it will increase or if it will ever decrease, the longing to do simple painless things, the nonstop pain of doing pretty much everything, and mostly the exhaustion.  I’m really good at faking it in front of other people, but the second I’m alone all I can do is collapse.  What do I do with my free time?  I curl up in a cold dark room.  So what do I do?  What do you do when everything stops working?

Goodbye 2014

As we say goodbye to 2014 I’d like to wish you all a happy, safe and healthy New Year!!!  I encourage you to find something positive about 2014 and motivating about 2015.  My thankfuls are endless for 2014 and prior.  Thanksgiving and everyday I’m thankful.  I started my blog this summer and can’t believe where it’s taken me since.  I’m so grateful for those of you that read my posts and share with others.  Together we are making a difference and I am honored that you take the time to read it.  I had no idea where it would take me and look forward to where it will go in the next year.  2015 motivates me to take more ownership in my health.  I’d like to investigate the foods I’m eating and how they are making me feel.  I’d like to be a more vocal and knowledgeable patient for my doctors.  No one knows me better than myself and I can’t expect them to help without my feedback.  I’d like to advocate and raise awareness however I can.  I don’t make resolutions but I do want to look back, this time next year, and be able to say I’m healthier in some way, no matter how big or small!  I can’t control my pain but I can control what I’m doing about it.