30 Things About My Invisible Illness You May Not Know

http://invisibleillnessweek.com/

1. The illness I live with is: Chronic post-traumatic headache/migraine
2. I was diagnosed with it in the year: 2008 - after a car accident
3. But I had symptoms since: some headaches throughout teenage years
4. The biggest adjustment I've had to make is: not always being able to take care of myself / depending on other people so much. Also, accepting that my relationships and plans for my life would be very different from now on. And, giving up my perfectionist tendencies and accept "good enough" because that's all I am often able to do.
5. Most people assume: that nothing is wrong with me / that I'm fine
6. The hardest part about mornings are: getting up
7. My favorite medical TV show is: House, CSI (Miami, New York)
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights are: getting to and staying asleep. I often wake up because of the pain
10. Each day I take __ pills & vitamins: I plead the fifth
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic
12. If I had to choose between an invisible illness or visible I would choose: this is a really tough one. My instinct is to say a visible illness, but I know that there is a whole stigma attached with that too. However, at least people wouldn't question that I even have an illness... which is very difficult to hear as someone dealing with chronic pain. At least with an invisible illness, I don't always have people looking at me strangely or asking me what's wrong/what happened.
13. Regarding working and career: I have been unable to work since the accident in 2008. I am currently taking a leave of absence from graduate school.
14. People would be surprised to know: I am in pain (often severe) every single day
15. The hardest thing to accept about my new reality has been: that I have changed and that I have limitations - I can't "do it all" anymore.
16. Something I never thought I could do with my illness that I did was: plan the wedding of my dreams
17. The commercials about my illness: well, the only ones I've seen are for Excedrin Migraine, which are very misleading as to what migraine really is and how debilitating it can be.
18. Something I really miss doing since I was diagnosed is: Well, this could be a very long list... I miss reading. The visual disturbances, migraine pain, cognitive difficulties, memory troubles, limitations on doing any task... make it difficult to read
19. It was really hard to have to give up: who I was before the accident... I still haven't completely let go of that yet
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: have no idea what to do with myself (assuming "normal" is feeling "good," not what my "normal" has become)! It's been so long since I've felt good...
22. My illness has taught me: to recognize the strength that I DO have, but to bring me to the end of my own resources... to bring me closer to God. It is teaching me to TRUST God more... but it is definitely a process.
23. Want to know a secret? One thing people say that gets under my skin is: Migraines are just bad headaches; take some pills and keep going / move on, it can't be that bad
24. But I love it when people: Show that they care. Even just little things like: being aware of how bright a room is, asking if the TV/radio is too loud, rubbing my neck/shoulders/head, treating me like a person rather than the disease/illness
25. My favorite motto, scripture, quote that gets me through tough times is:

• "Be still, and know that I am God" (Psalm 46:10)
• "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4)
• "You will seek me and find me when you seek me with your whole heart" (Jeremiah 29:13)
• "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6)

26. When someone is diagnosed I'd like to tell them: keep yourself informed - research things online, ask your doctor questions, do your best to understand and articulate your disease/illness. Don't feel like you're alone - join blogging, church, or other support group(s) to help you through the difficult times that you will go through.
27. Something that has surprised me about living with an illness is: how strong I can be, and how many people misunderstand invisible illnesses so much that even their well-intentioned words and actions can be hurtful.
28. The nicest thing someone did for me when I wasn't feeling well was: take care of me... When I have a bad migraine, my husband does everything he can to take care of me (feeds me, makes sure I take my medicine, massage my head/neck/shoulders/back/feet, make sure I'm in a dark room and am as comfortable as I can be, and anything else that I need).
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out and get more awareness and understanding out into the public view about invisible illnesses - they are real and often difficult to bear.
30. The fact that you read this list make me feel: heard/validated, and hopefully a bit better understood. It gives me hope that invisible illnesses can be better understood, if only people will listen.

Pursuing a Degree with Migraine Agony

September 2010 Headache Blog Carnival:  "Students and headache disorders - How have migraines & headaches affected your schooling? How has a headache disorder affected your school age child? How did you cope with balancing school and headaches or migraines?" - There are some great posts for students with headache disorders (of all ages). Take a look at the above link.

During my late teen years, I had some problems with headaches; but none really interfered with my life. If I had headache/migraine problems in college (undergraduate), they didn't prevent me from going to classes, completing assignments, etc.

I felt that my health had improved enough to begin graduate school in the Fall 2009 (about 10.5 months after the car accident that spun me into a whirlwind of pain).

I didn't seek out assistance because I didn't want to be viewed differently. I tried to keep my chronic migraine disease to myself. I tried to pace myself, especially with long-term assignments, so it wouldn't be a dire situation if I had a migraine attack at the last minute. This was a huge step for me. I was the one in school that planned ahead, but typically procrastinated (you know, writing papers the night before they were due). Keeping up with the reading was difficult - sometimes I could concentrate/focus and read, and sometimes I couldn't... my memory worked only part of the time, and it was impossible to predict.

When I continued to fall behind in my classes, I finally decided that I needed to reach out for help. I talked with my professors and with a couple of my peers. It got to a point where I needed more assistance than I wanted to accept.

I set up a meeting with the director for the Center for Student Academic Support. But, it was too late in the semester to really help. I remember filling out the form to get academic support/assistance... it tore me apart. How could all of this be happening?! I went to a great liberal arts university and did well during my undergraduate years (i.e., before the accident), taking 15-17 credits per semester and working 20-25 hours per week. And, now, here I am... unable to keep up with school work (even with accommodations), unable to fulfill the 20 hours of work required for my graduate assistantship... unable to live my life in any sense of the word "normal." It ached me to be filling out paperwork asking me about whether I had ever been tested for learning disabilities, been in special education or remedial classes, and then rating my skills (reading  rate and comprehension, test-taking skills, etc...). What a horrible blow to my self-confidence (which was already pretty low). We discussed accommodations - extended time in a secluded room for taking exams - which helped a little.

Unfortunately, my migraines worsened as the semester(s) progressed. I struggled through my first semester, which resulted in me being placed on academic probation. I was able to improve my grades during the spring semester, which resulted in me being taken off of academic probation. It definitely took a toll on my health, though. But, I was missing out on so much of the graduate school experience - doing research, spending time with other students, etc...

I took the summer off from school, and I am taking a leave of absence for at least this semester. I'm still trying to figure out how to successfully continue pursuing my master's degree, while I continually suffer with chronic migraine pain.

My Advice:
- Seek help early on (professors, school disability office, peers)
- Communication is key (be direct, consistent, forward)
- Be realistic of your limitations (and stay within them) - only you can know what your limitations are and what you need

Changed Relationships

Changed Relationships

One moment in time has drastically changed
every aspect of my life.

Dealing with these changes
has been much more difficult
to deal with than I ever imagined.

I have changed.
My relationships have changed.
And it is hard.

My relationship with God has been rocky.
I have felt angry, disappointed, and abandoned.
I'm in the process of mending this most important relationship.

My relationship with my family has been one of love and support.
But, my family and I are still trying to
grieve the old me and accept the new me.

My relationships with friends have all but disappeared.
Perhaps they don't know what to say or do,
perhaps they can't accept the changed me.

I already feel so alone,
facing the monsters of chronic pain,
while trying to accept my limitations.

But, feeling separated from those I was once close with
is a burden I never could have anticipated.
It's a loss I didn't expect, when the pain began.

Finding the support of the blogging community
has come at just the right time.
I thank all those that I've come into contact with -
your support and understanding is much appreciated.

© 2010 Jamie Valendy.

September: Pain Awareness Month

September is Pain Awareness Month, "Uniting Our Voices, Conquering Pain Together." The American Pain Foundation works hard all year long to improve policies that impact pain patients and improve awareness about the obstacles pain patients encounter. There are many easy, fast ways for you to get involved and help increase public awareness. Visit  American Pain Foundation.

5 Things You Can Do to Make a Difference this September

1. Sign up to participate in the Virtual March. Organizations and groups are invited to endorse the march!
2. Contribute your voice by submitting your story to the 10,000 Voices Campaign.
3. Spread the word! If you’re on Facebook or use another social networking platform, use your status to update people on Pain Awareness Month and the Virtual March. Encourage them to do the same!
4. Think of five organizations or community partners in your area. Tell them about Pain Awareness Month and ask them to visit this website to endorse the march and share it with their members.
5. Support our efforts by donating to the cause. Donate Now.

Dusting Off My Bible: 1 & 2 Peter

Well, my Bible has been gathering dust for much of the past year or two. Since the accident, I've stuck with a few key Scripture verses, and read a few books of the Bible (Job, Habakkuk, and perhaps bits and pieces of others). My faith has been on a roller coaster through the trials and suffering that my car accident has lead to.

A dear friend of mine recommended that I read 1 and 2 Peter. I had my Bible open to 1 Peter for several weeks. A few nights ago, I felt compelled to sit down and read. I read 1 and 2 Peter, and they really touched me.

In 1 Peter, we are told that our faith in God will lead to a glorious inheritance and salvation. But, Peter continues...

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith -- of greater worth than gold, which perishes even though refined by fire -- may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed" (1:6-7)

God allows his followers' faith to be tested, so that we might discover our own weaknesses and His infinite strength. It is to increase/deepen our faith in Him.

Further in 1 Peter, we are told that "since Christ suffered in his body, arm yourselves also with the same attitude, because he who has suffered in his body is done with sin" (4:1). Based on my study Bible and my own meditation on this passage, I think it is saying that physical suffering can equip us with a new outlook on life. Priorities may shift:  things that were once insignificant take on new meaning, while other things lose their value. Sinful desires become less alluring because we have learned (through suffering) to depend on Christ to help us through.

God gives us trials in a way to break us... but let me explain. Trials and suffering can bring us to the end of our own resources, and hopefully back to God. There is a shifting point during times of trial and suffering. When we reach that point, realize, and accept that ONLY with God can we get through this, things take on new meaning (even the suffering looks different). God wants us to place our complete trust and faith in Him. When we no longer have the strength and the resources to pick ourselves back up, we turn to God to lift us up.

Now, don't get me wrong, I still struggle with completely trusting in God to give me the strength to keep going with all of this pain. But, in my heart, I know that God will never leave me and that this experience is to bring me closer to Him. I don't understand why this happened to me, why I must be in so much pain every single day, why my life has been completely flipped upside-down, etc... (and I go through stages of denial and anger about it) but I long to honor my Lord. At my core, my deepest desire is to serve, honor, and glorify Him who gives me the strength and courage to go on. I don't know how, in the midst of all of this, I am supposed to praise, honor, and serve Him; but I can't give up. He has never given up on me, and I will not give up on trying to be His faithful servant.

Kerrie Roberts - No Matter What


© 2010 Jamie Valendy.

One Lovely Blog Award

Thank You WinnyNinny PooPoo at No Extended Warranty

This was such a surprise for being nominated for this the One Lovely Blog Award. Thank you so much for the encouragement and the award.

Here are the rules:

- Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.

- Pass the award to 15 other blogs that you’ve newly discovered. (if possible)

- Remember to contact the bloggers to let them know they have been chosen for this award.

Please visit the blogs that I've chosen to pass the award on to. They are all great!

1) Abi's Migrainous Wanderings by Abigail Addison
2) Adventures in Occipital Nerve Stimulation by Banner
3) A Rewoven Life by Susan
4) Chronic Warrior by admin
5) Final Trick by dyspatient
6) Free My Brain From Migraine Pain by admin
7) God Whispers by God Whispers
8) How to Cope with Pain by How to Cope with Pain
9) jasmine's cove by jasminepw
10) Migraine 365 by Jen
11) MigrainePuppet by Migraine Puppet
12) Migrainista by Migrainista
13) Mom Migraine by Mindy
14) Painfully Speaking by Jessica
15) Through the Words of Chronic Pain by A FIGHTER