Wednesday, September 30, 2015

September is Pain Awareness Month

September is Pain Awareness Month


My 30 Things - Better late than never!




30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine, fibromyalgia, lupus, and more.
2. I was not diagnosed until after I sustained a TBI.
3.  I had symptoms since: my menstrual cycle began.
4. The biggest adjustment I’ve had to make is: letting go of the old me.
5. Most people assume: I look OK, so I must feel OK.
6. The hardest part about mornings is: waking up. I wake each day with head pain.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: iPad
9. The hardest part about nights is: falling and staying asleep.
10. Each day I take more pills than my 83 year old mother.
11. Regarding alternative treatments: I've tried almost everything except acupuncture. None have helped with pain, but have helped with stress.
12. If I had to choose between an invisible illness or visible I would choose: Neither.
13. Regarding working and career: chronic daily pain prevents me from having a full time career.
14. People would be surprised to know: I am in pain every day and hide it very well.
15. The hardest thing to accept about my new reality has been: not being able to do want I feel I should be doing.
16. Something I never thought I could do with my illness that I did was: have the honor to help others who experience chronic pain.
17. The commercials about my illness: make me laugh out loud.

18. Something I really miss doing since I was diagnosed is: doing whatever I want, whenever I want without any pain.
19. It was really hard to have to give up: sleeping in on the weekends. Doing so makes my head pain much worse.
20. A new hobby I have taken up since my diagnosis is: making card.
21. If I could have one day of feeling normal again I would: I have to think about that one.
22. My illness has taught me: I'm resilient.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, it's just a headache."
24. But I love it when people: how can I help?
25. My favorite motto, scripture, quote that gets me through tough times is: this too shall pass.
26. When someone is diagnosed I’d like to tell them: Hang in there, and get support.

27. Something that has surprised me about living with an illness is: how many different people I've met.
28. The nicest thing someone did for me when I wasn’t feeling well was: put me to bed and covered me with blankets.

29. I’m involved with Invisible Illness Week because: education.
30. The fact that you read this list makes me feel: inspired. Thank you for reading.

Thank you to MyMigraineLife for the reminder!

Tuesday, June 2, 2015



Migraine and Headache Awareness Month Blog Challenge Day 2


Today's Prompt: Who Helps You Hope?
Which person in your life has helped you most to hold on to hope, despite your Migraines or Headaches and how?


It's not just one, but two very special people who help me hope, Sarah and Samuel, my children. Now 25 and 20-years-old respectively, they've grown up into spectacular adults. When things seem especially bleak, and my pain is at its highest, I try to think of my children.

My pain doesn't evaporate when I think of them, but it does help with my perspective. The thing is, when I'm in extended chronic, debilitating pain, I see problems everywhere; my house isn't clean, the laundry is piled high, the weeds are overtaking the garden, the oil in the car needs to be changed, the water damage from this winter is still not fixed, and on and on. It's not that these issues don't exist when my pain is reduced, they do, but chronic pain can distort our emotions. In essence, I make mountains out of mole hills.

Sarah and Sam tend to notice when I get out of whack and rescue ME. They reaffirm that everything is not as horrible as it seems, assure me things WILL be OK and give me mountains of hope. Without them, I'm not sure where I would be on this journey.

The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association; http://www.ahmablog.com/2015/06/migraine-headache-blog-challenge-2.html#.VW5Mg9Viko

Thanks for reading,
Happy Migraine and Headache Awareness Month
Nancy

Friday, September 5, 2014

September 2014 Headache Disorders and Migraine Blog Carnival

September 2014 Headache Disorders and Migraine Blog Carnival

The theme for the September Headache Disorders & Migraine Blog Carnival is to share our thoughts on having invisible illness."Invisible Illness Awareness Week 2014" has suggested we participate by   writing a 30 Things meme or simply sharing our thoughts.  Kerrie Smyres at The Daily Headache will be hosting the carnival this month and it would be great if you would hop over there and check them out.     

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: post-traumatic headache, migraine, Sjogren's Intracranial Hypertension, Raynaud's, hypothyroid, Glaucoma, mixed connective tissue disease/lupus anxiety and depression.
2. I was diagnosed with it in the year: around 1999 and every year after!
3. But I had symptoms since: I think before I fell in 1996, but who can remember? 
4. The biggest adjustment I've had to make is: accepting my life as it is, not what I thought it would be. 
5. Most people assume: because I look "good" I feel good.    
6. The hardest part about mornings are: getting out of bed.
7. My favorite medical TV show is: Mystery Diagnosis.
8. A gadget I couldn't live without is: my kitchen tongs, they help me reach everything from my medications to pitchers on the top shelf in my kitchen cabinets
9. The hardest part about nights are: staying asleep and shutting down my mind.
10. Each day I take 13 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried almost everything but acupuncture.If they work for you great!
12. If I had to choose between an invisible illness or visible I would choose: neither, but if push came to shove, an illness that is visible would be better, I guess.
13. Regarding working and career: not the career I planned on and working is nearly impossible. 14. People would be surprised to know: how much daily pain I live with and have adapted to.
15. The hardest thing to accept about my new reality has been: I can't do everything I want to. 
16. Something I never thought I could do with my illness that I did was: help others.
17. The commercials about my illness: Suck!
18. Something I really miss doing since I was diagnosed is: multitasking.
19. It was really hard to have to give up: caffeine.
20. A new hobby I have taken up since my diagnosis is: I haven't started one. 
21. If I could have one day of feeling normal again I would: for started I would sleep late, drink coffee and go to bed way past my bedtime!!
22. My illness has taught me: a new way to live and to be a bit more patient.
23. Want to know a secret? One thing that gets under my skin is when people say: "oh you have a headache, I had one yesterday too."
24. But I love it when people: take the time to ask how I really feel and mean it.
25. My favorite motto, scripture, quote that gets me through tough times is: "That which does not kill us makes us stronger" Friedrich Nietzsche.

26. When someone is diagnosed I'd like to tell them: hang in there,you'll find lots of support 27. Something that has surprised me about living with an illness is: how many people live with invisible illness too.
28. The nicest thing someone did for me when I wasn't feeling well was: my wonderful children continually help me with everything! 
29. I'm involved with Invisible Illness Week
 because: raising invisible illness awareness

30. The fact that you read this list makes me feel: thankful and honored!!
October's theme for the Headache Disorder & Migraine Blog Carnival is "Share your tips for creating a Migraineur-friendly living environment." If you have questions about the carnival, contact Diana at the Headache Disorders and Migraine Blog Carnival.      

As always thanks for reading,

Nancy

Tuesday, September 2, 2014

September is Pain Awareness Month 


As a U.S. Pain Foundation Pain Ambassador, I'd like to share with you the U.S. Pain Foundation Pain Awareness Month activities. Some include online challenges while others take place in the "real" world. I hope you'll participate in the ones you can.

You can start off by taking the US Pain Pledge to raise awareness, educate, empower and support those in chronic pain.  The U.S. Pain Foundation's 30 Day Challenge is a fun and easy way to help the cause. For example yesterday's challenge involved changing your social media pages to the U.S. Pain Foundation logo, which you can still do! Today was to wear blue and white to show support for pain awareness. Tomorrow, day 3 is to write about how living pain free would impact your life. To follow and participate in the rest of the challenge, click on the above link.

Being supportive and raising awareness will help more than 100 million (yes that's the number) people who live in chronic pain. How will you help?

As always thanks for reading,





Thursday, March 20, 2014

March 2014 Western New York Migraine and Headache Disorder Support Group Meeting

Announcing the March 2014 Western New York Migraine and Headache Disorder Support Group Meeting

The next meeting of the Western New York Migraine and Headache Disorders Support Group is being held on Monday, March 24, 2014. Our meeting starts at 7 p.m. in the conference room of the Dent Tower, 3980 Sheridan Ave., Amherst, N.Y. 14226.

We will be having an "open topic" night, so feel free to bring any questions and/or concerns you'd like to discuss about migraine and headache disorders. This confidential, caring support group provides accurate information and education about migraine and headache disorders.


We do ask that you abstain from wearing perfume, cologne, scented aftershave, scented lotions and/or hair products as these are strong migraine triggers for some people. The lights are kept low to help anyone who has light sensitivity issues and feel free to bring your eye wear if you feel the lighting may be problematic.

If you have questions or concerns, please fee free to contact me at nhb@wnymigrainesupport.com. I look forward to seeing you Monday, March 24, 2014 at 7 p.m.


Thanks for reading,
Nancy

Wednesday, March 19, 2014

It's time to enjoy the March 2014 Headache Disorders & Migraine Blog Carnival!

 

Diana Lee at Somebodyhealme.com is hosting the March 2014 Headache Disorders and Migraine Blog Carnival. The theme this month is "Head Above Water: What Keeps you going when you're struggling to cope with living with Migraine and another Headache Disorder"?
 
I didn't write anything this month as I planned to because I've had a hard time keeping my head about water this month like many of you have. This winter has been very harsh on  us which has not helped those struggling with depression. It's been difficult to get out of bed some days, so I would say I've not been coping all that well - hence, no post.

But reading these wonderful blogs has shown me that once again, I am not alone in this struggle and that, this too shall pass. I'd like to share them with you, "Head Above Water".

Looking forward, April's theme for the Headache Disorder & Migraine Blog Carnival is "Your favorite Headache Disorders-related blog post since the last carnival". Your blog entry is due to Diana at Somebodyhealme.com  by Friday, April 11, 2014 at midnight and will be posted on Monday April 14, 2014. If you have questions about the carnival, contact Diana at the Headache Disorders and Migraine Blog Carnival.      
 




Thank you for reading, it means more to me then you know,



Nancy


Monday, March 3, 2014

Migraine, Perfectionism and the Cold

It's been a long time since I've updated my blog because my desire to write evaporated and I've been feeling plagued by others perfectionism. But no more. See, the thing is I'm not a linguistic genius or ever claimed to be a "writer"so if you came here looking for perfection without grammatical errors, and/or to be critical of my 'writing' please stop reading and move along to a grammatically correct blog. If you want to read an honest account about the ups and downs of my life with migraine and other chronic conditions - make yourself comfortable.

Yes, the number in the photo is correct - 41 degrees F - which happened to coincide with one of the coldest nights of the year here in Buffalo, N.Y. Here's what happened.

My furnace has been acting funny for a while, leaking water from the humidifier, not clicking on when it's really cold and other irritating things. I've been able to deal with these "little" nuisances by making quick fixes like putting a bucket under the drip (needing to be emptied every few hours) manually turning on the furnace and using a fan to dry the never ending soaking wet carpet.

Last Thursday around 5:30 p.m. my furnace decided it wasn't going to play nice any longer and thought it would be a good idea for water to pour (not drip) out and make odd buzzing sounds. When the buzzing grew louder I knew it was time to shut it down and call Tom, my heating and cooling man. His quick response set me at ease saying he would be over in about a half hour. A half hour turned into an hour and a half and then the dreaded call came - "Any chance you have a fireplace or space heater so you can make it  through the night?  I can be at your house at 8:30 tomorrow morning."

UGH!! Yes, I do have a fireplace but it hasn't been used in five years and my family room has a separate heater. I begrudgingly told Tom I could wait until tomorrow morning to have my furnace fixed. Of course I didn't know my house would get down to 41 degrees F! 

I gathered flannel sheets, two comforters, one of the quilts a dear friend of mine made, a thermal blanket, and slept on the couch in the family room. I was bundled up past my nose (which gets incredibly cold due to Raynaud's) and had a pillow at the head of the couch to block the breeze coming from the rest of the house. To say the least it was not a very restful night.

Tom arrived closer to 9:00 a.m. but fixed my furnace in short order.  Yes, HEAT! It only took three quarters of the day to warm my house back up.


Now if this had happened a year ago I would have broken down becoming overwhelmed and anxious. But I am getting used to this kind of 'stuff' all while waiting for the other shoe to drop - it always does.  

Thanks for reading,

Nancy