30 Things About My Invisible Illness You May Not Know

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I originally did this two years ago and some things have changed.  I updated my answers for this years Invisible Illness Awareness week, which is September 9-15th.


1. The illness I live with is Chronic Migraine.
2. I was diagnosed with it in the year 1986.
3. But I had symptoms since I was between one and two years old.
4. The biggest adjustment I’ve had to make is being a mom despite being in pain.
5. Most people assume that an Excedrin Migraine will take my pain away.
6. The hardest part about mornings are getting out of bed in pain to get the kids ready for school.
7. My favorite medical TV show is Grey's Anatomy.
8. A gadget I couldn’t live without is my iPhone.
9. The hardest part about nights is waking up in pain often.
10. Each day I take 6 vitamins/supplements.  I no longer take prescription medications. (No comments, please)
11. Regarding alternative treatments I have tried acupuncture, massage therapy, hydro colon therapy (HCT), acupressure, meditation, chiropractic care, and naturopath/homeopathic treatments.
12. If I had to choose between an invisible illness or visible I would choose neither.

13. Regarding working and career, it's an impossibility right now.
14. People would be surprised to know that I suffer from depression, anxiety, fibromyalgia, RLS (restless leg syndrome), carpal tunnel syndrome, and arthritis too.
15. The hardest thing to accept about my new reality has been not being able to have a "normal" life.
16. Something I never thought I could do with my illness that I did was raise money for research.
17. The commercials about my illness make treating migraine look as simple as taking an OTC medication.
18. Something I really miss doing since I was diagnosed is taking ballet class.
19. It was really hard to have to give up control of what my day would be like.
20. A new hobby I have taken up since my diagnosis is blogging.
21. If I could have one day of feeling normal again I would dance.
22. My illness has taught me resilience and humility.
23. Want to know a secret? One thing people say that gets under my skin is how they had a migraine once and took an Excedrin Migraine or Advil Migraine and it went away and never came back and asking if I tried that.
24. But I love it when people show genuine care and compassion.
25. My favorite motto, scripture, quote that gets me through tough times is, "God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference."
26. When someone is diagnosed I’d like to tell them I know it's hard but never give up.
27. Something that has surprised me about living with an illness is my strength.
28. The nicest thing someone did for me when I wasn’t feeling well was drive me to urgent care.
29. I’m involved with Invisible Illness Week because I want people to know my illness exists.
30. The fact that you read this list makes me feel seen and validated.



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Penne and Turkey Kielbasa

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When I'm not really in the mood to cook and need something quick and easy, I make this go-to recipe I put together one day with stuff I had in the pantry and fridge.  It's also super delicious and always goes fast in my house!  Finding recipes that are easy to make are a necessity in a chronic illness household.  Since this one is such a hit with my family (and really inexpensive to make), I wanted to share it with you.  This recipe makes enough to feed 8-10 people.


Penne and Turkey Kielbasa

2 packages turkey kielbasa, cut into half moon slices
1 green pepper, sliced*
1 medium onion, sliced*
1 jar pasta sauce (Prego lends the most flavor)
1 8 oz. package fresh or frozen broccoli or spinach (or any other vegetable you like)
1 box penne
1-2 tbsp olive oil

*You can easily substitute frozen peppers and onions for the fresh.  No chopping required!

Bring a large pot of water to a boil and cook penne according to directions on the package.  Add in vegetable during last 5 minutes of cooking time.  Drain pasta and vegetables, reserving 1/2 cup of the pasta water.

Heat a large skillet over medium high heat and add oil.  Saute peppers and onions until peppers are soft and onions are translucent, about 8 minutes.  Add in kielbasa and cook another 5-6 minutes.  Stir in pasta, vegetables, reserved pasta water, and jar of pasta sauce.  Cover and cook on low for 10 minutes.  Add salt and pepper to taste, if needed (I usually don't need to add any).  Serve with a side salad or some crusty bread.  A hearty and healthy meal the whole family will enjoy!

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The Natural Way

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Back in December, as I was transitioning into a new health care regime that did not involve prescription medication, I decided to extend that into hair and beauty care.  As Black woman, I have had my hair relaxed since I was 11.  That is, my hair has been chemically processed to straighten my natural curls.  For years now, I have noticed that after every re-touch, I would get a severe migraine.  I have been wanting to cut my hair down super short and go natural for years but didn't have the courage to.  It's a big commitment and a huge decision.  After my hospitalization it was a no-brainer to do the big chop.

I have learned to love my natural hair and wished I ditched the relaxer a whole lot sooner.  The empowerment in cutting off my hair was amazing to me.  I was not expecting for the act of it to be so powerful or to have so much meaning.  I feel so much closer to my roots and have learned to accept myself in my natural state.  It's a bit challenging trying to find the right products for my type of hair and curl pattern, but I'm loving the journey!  From color and coils to a weave to protect my growing curly 'fro... Here's a look at my hair evolution!





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Migraine Research Opportunity - Participation Limited!

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Your opinion counts (and here's $10 to prove it).

We have been asked to conduct a market research study regarding a migraine treatment product. Participants that meet the criteria will be given a $10 Amazon Gift Card for their time, but participation is limited to a first-come, first-served basis.
The survey should take less than five to ten minutes and participation is optional.



We take your privacy seriously. Your e-mail address has not been, and will not be, provided to the sponsor of this research.

About Migraine.com Market Research
In addition to our own surveys which we conduct from time to time, like Migraine In America and Chronic Migraine In America, Migraine.com also occasionally conducts paid research studies for companies interested in learning more about how patients and/or consumers feel about their products or services.
Please know that:
  • We will always let you know when a survey is for a market research sponsor.
  • Participation in market research is completely optional.
  • Those who participate in the surveys will be paid an honorarium for their time. What the honorarium is will be clearly stated up front.
  • Participants may need to meet certain criteria to participate in a survey and receive the honorarium. These criteria will be included as the first few questions of the survey, so it is possible that one might start the survey and not meet the criteria.
  • Participant’s personal information will never be shared with the sponsor. I.e. they will not see or be given access to your e-mail address, and we will never tell the sponsor “Susan Smith said...” but rather results are presented in aggregated form like “63% of respondents said...”
  • Research opportunities are limited to a set number of participants, and participation is on a first-come, first-served basis. If you try to participate and you are too late, we’re sorry about that, but we need to limit the number of respondents.


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CBT and Negative Thinking

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What is Cognitive Behavioral Therapy and what is it used for?  CBT is a form of psychotherapy that emphasizes the important role of thinking in how we feel and what we do.  Cognitive-behavioral therapists seek to learn what their clients want out of life (their goals) and then help their clients achieve those goals.  The therapist's role is to listen, teach, and encourage, while the client's roles is to express concerns, learn, and implement that learning.  CBT is used in a wide variety of mental illnesses including mood disorders, anxiety disorders, eating disorders, personality disorders, eating disorders, substance abuse disorders, sleep disorders and psychotic disorders.  It has also been shown to be useful to patients suffering from chronic pain disorders.

One aspect of CBT is addressing negative thinking patterns and changing those behaviors into more positive and productive ways of thinking and living.  The first step in letting go of negative thinking is identifying it.  There are several types of negative thinking.  The following list can help you pinpoint which types of negative thinking you tend to partake in and is also an easy way of remembering them.

1.  All-or-nothing thinking:  Looking at things in absolute, black-and-white categories, instead of on a continuum.  For example, if something is less than perfect, one sees it as a total failure.


2.  Overgeneralization:  Viewing a negative event as a part of a never-ending pattern of negativity while ignoring evidence to the contrary.  You can often tell if you’re overgeneralizing if you use words such as never, always, all, every, none, no one, nobody, or everyone.


3.  Mental filter:  Focusing on a single negative detail and dwelling it on it exclusively until one’s vision of reality becomes darkened. 


4.  Magnification or minimization (e.g., magnifying the negative and minimizing the positive):  Exaggerating the importance of one’s problems and shortcomings.  A form of this is called “catastrophizing” in which one tells oneself that an undesirable situation is unbearable, when it is really just uncomfortable or inconvenient.


5.  Discounting the positive:  Telling oneself that one’s positive experiences, deeds, or personal qualities don’t count in order to maintain a negative belief about oneself.  Or doing this to someone else.


6.  Mind reading:  Concluding what someone is thinking without any evidence, not considering other possibilities, and making no effort to check it out.


7.  Fortune telling:  Anticipating that things will turn out badly, and feeling convinced that the prediction is an already established fact.  It often involves:  (A) overestimating the probability of danger, (B) exaggerating the severity of the consequences should the feared event occur, and (C) underestimating one’s ability to cope should the event occur.  B and C are also examples of catastrophizing.


8.  Emotional reasoning:  Assuming that one’s negative emotions necessarily reflect the way things really are (e.g., “Because I feel it, it must be true.” “I feel stupid, therefore I am stupid”). 


9.  Rigid rules (perfectionism).  Having a precise, fixed idea of how oneself or others should behave, and overestimating how bad it is when these expectations are not met.  Often phrased as "should" or “must” statements.  


10.  Unfair judgments:  Holding oneself personally responsible for events that aren't (or aren’t entirely) under one’s control, or blaming other people and overlooking ways in which one might have also contributed to the problem.


11.  Name-calling:  Putting an extremely negative and emotionally-loaded label on oneself or others.  It is an extreme form of magnification and minimization, and also represents a gross overgeneralization.  

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Finding Reasons to Smile

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Everybody needs a reason to smile.  Especially those who struggle daily with daily chronic pain and frequent bouts of depression and anxiety.  For the past nine months, finding reasons to smile or to be happy have been really difficult.  The struggle with trying to find relief for my pain combined with emotional stress has impaired my ability to believe that I ever will genuinely smile again.  I do have moments of happiness but they tend to be few and far in between.  

In the morning, I should wake up happy that I am alive and breathing.  Instead, I wake up in a fit of anxiety after a night of anxiety-filled dreams.  All of my worries manifest themselves in my dreams.  They continue to haunt me throughout the day and resume after I close my eyes at night.  This has lead to a very long bout of depression because I can not seem to find my way out of the anxiety.  I so would have preferred that depression and anxiety were never an issue for me.  I can handle the physical pain.  That is a piece of cake compared to the emotional anguish and paralysis that mental illness can bring.

Slowly I have been crawling out of the darkness.  I know that it's only temporary but this has been the longest I've been stuck in it.  I'm trying not to let things or circumstances fuel my anxiety.  Since many things are out of my control, I can control to not let it rule me.  That is a choice I can smile about.  That is my silver lining for today and I will continue to find them in the days to follow.  I expect them to keep me motivated and more positive in my outlook on life.  I'm sure there will be times when finding them will be little harder, but in the end, I'm optimistic that I will find peace within myself.



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Think Before You Donate

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THINK BEFORE YOU DONATE
SOMETHING TO THINK ABOUT BEFORE YOU MAKE CONTRIBUTIONS:

As you open your pockets to do a good thing and make yourself feel good, please keep the following facts in mind: 
The American Red Cross
President and CEO Marsha J. Evans'
salary for the year was $651,957 plus expenses
MARCH OF DIMES
It is now called the March of Dimes because
only a dime for every 1 dollar is given to the needy.
The United Way
President Brian Gallagher
receives a $375,000 base salary along with numerous expense benefits.
UNICEF
CEO Caryl M. Stern receives
$1,200,000 per year (100k permonth) plus all expenses including a ROLLS ROYCE.
Less than 5 cents of your donated dollar goes to the cause.
GOODWILL
CEO and owner Mark Curran profits $2.3 million a year.
Goodwill is a very catchy name for his business.
You donate to his business and then he sells the items for PROFIT. 
He pays nothing for his products and pays his workers minimum wage! Nice Guy. 
$0.00 goes to lp anyone! 
Stop ing to this man.









Instead, give it to ANY OF THE FOLLOWING GO "GREEN" AND PUT YOUR MONEY WHERE IT WILL DO SOME GOOD. (Some of these are U.S. only but not all.)
The Salvation Army
Commissioner, Todd Bassett receives a small salary of only
$13,000 per year (plus housing) for managing this $2 billion dollar organization.
96 percent of donated dollars go to the cause.
The American Legion
National Commander receives a $0.00zero salary.
Your donations go to help Veterans and their families and youth!
The Veterans of Foreign Wars
National Commander receives a$0.00 zero salary.
Your donations go to help Veterans and their families and youth!
The Disabled American Veterans
National Commander receives a$0.00 zero salary. Your donations go to help Veterans and their families and youth!
The Military Order of Purple Hearts
National Commander receives a $0.00 zero salary.
Your donations go to help Veterans and their families and youth!
The Vietnam Veterans AssociationNational Commander receives a $0.00 zero salary.
Your donations go to help Veterans and their families and youth!
Make a Wish:For children's last wishes.
100% goes to funding trips or special wishes for a dying child.
St. Jude Research Hospital
100% goes towards funding and helping Children with Cancer who have no insurance and can
not afford to pay.
Ronald McDonald Houses
All monies go to running the houses for parents who have critical Children in the hospital.
100% goes to housing, and feeding the families.
Lions Club International
100% OF DONATIONS GO TO HELP THE BLIND,BUY HEARING AIDES, SUPPORT MEDICAL MISSIONS AROUND THE WORLD. THEIR LATEST UNDERTAKING
IS MEASLES VACCINATIONS (ONLY $1.00 PER SHOT).


Please share this with everyone you can!
Thank you Barbara Mills for this information!


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