Sunday, December 28, 2008

From Hell to Hope

Well, it has been quite a difficult four months. These months have been nothing short of Hell on earth. But, I survived them. And, I am here.

In August, I decided to stop taking Lyrica (an anti-convulsant) because we were unable to increase the dose to a helpful level without also increasing undesirable side effects. As I stopped the Lyrica, I started Zonegran, another anti-convulsant. This medication gave me severe anxiety and panic attacks. It took three weeks to realize the anxiety and panic were medication-induced.

I decided to take a medication holiday because of the awful fear Zonegran gave me of trying a new medication. Even though I was still taking Verapamil (which helps my NDPH), the Migraines came back with greater intensity and greater frequency: daily. In late September, I started a very low-dose of Keppra, an anti-convulsant with a low-side effect profile. For other conditions, I have found that very low doses of medications can help resolve my condition, whereas higher dose make it worse or create other unwanted horrid side effects.

However, it seems that my medication holiday was too long, and I ended up hosptialized in mid October for seven days due to the intensity of my Migraines. (More to come on my hospitalization.) Both the Verapamil and Keppra doses were increased. Rescue medciations were changed.

Another month went by, I still had daily Migraines, so the Keppra dose was again increased. Meanwhile, at the beginning of December, I had another round of Cervical Facet Blocks, Occipital Nerve Blocks and C2 root nerve block mainly for my neck, but also a hope they might affect my Migraines as well. (More to come on these blocks.)

Finally, two weeks before Christmas, the intensity started to decrease enough so I can leave my bed and start gradually increasing my stamina. I forced myself to start walking on the treadmill despite my level of pain. If I could get out of bed, I would walk.

My husband and I spent five days over Christmas in Iowa visiting his parents. For a few days, my daily NDPH pain was down to 1 out of 10! Hurrah! And Migraine frequency has significantly decreased from daily to a third of that.

Today, December 28th, 2008, I look back at the last four months and wonder how I got through. Many days, I wanted to end the pain by any means possible. I was done. I was past done. I was burnt to a crisp. I had no will. I had no endurance.

But, I can now look back and say, if it gets that bad again, I got through it before and I can do it again. During the severe parts, I thought I didn't care to live until when it got better. Now, I am so glad I was sustained.

I will enjoy every moment that is a pain-decreased day. And when the pain-filled ones come back, I will remember today.

Thursday, December 4, 2008

Six Tips For Maximizing Holiday Enjoyment

With all the holidays that fall at this time of year, I feel a little overwhelmed with plans and activities. Right now, I take things on a day-by-day basis and sometimes a moment-by-moment basis.

I am constantly learning about how to deal with everyday situations and Migraine disease. This month's blog carnival topic at Somebody Heal Me is "Maximizing Your Enjoyment of the Holiday Season." I am going to share with you some tips that I find helpful when trying to enjoy the holidays.

I had an enlightening Thanksgiving holiday. It has been a rough few months for me. I've been Migraining more than I ever have before. Therefore, making concrete plans is quite difficult. 99% of the time I cancel plans. Making holiday plans can be quite a leap of faith.

This year, my husband and I spent Thanksgiving with my side of the family: my parents from out of town, my brother, his wife and my uncle. They all came to my house. To take the load off of myself, I planned to have an easy frozen Italian meal that my husband could execute if a Migraine decided to rear its head that day. I was briefly concerned that my family might be disappointed with a non-traditional Thanksgiving feast. But, I knew they would be equally disappointed with nothing on the table if I couldn't make anything at all!
Sometimes I don't realize that I set expectations for myself that are way too high. On a day-to-day basis, my body, my Migraines, my NDPH, and my anxiety put limitations on me. So, when the often stress-filled holidays arrive, I need to give myself even more leniency. So, I made a plan on which I could follow through.

Holiday Tip #1: Make it easy on yourself. Be Flexible. Only plan for what you think you can reasonably do.

Upon hearing of my Thanksgiving meal plans, my parents graciously offered to make a simple and easy traditional Thanksgiving meal. I made sure they understood that I would not be able to help out, especially if I was having a pain-filled day. This brings me to my Holiday Tips #2 and #3.

Holiday Tip #2:
Let others help you out, especially when they offer it. :)

Holiday Tip #3:
Keep good communication lines open with those who you will be interacting with during the holidays.

When I get together with family members and friends, I have found it extremely helpful to let everyone know what limitations I have. Often I tell my family/friends what they might expect from me. I let them know, in advance, that if I have a Migraine or an elevated NDPH, I may or may not be able to participate in activities as planned. I am honest about the fact that I may need frequent breaks. By doing this, when I come upon a situation where I need to leave early, or go to a back room for a break, others already understand why. If I am going to someone else's house and find myself in a situation where it is necessary for me to retreat to a quiet bedroom because of a Migraine, I feel comfortable doing so.

Holiday Tip #4: Enjoy the moment.

This is a very simple one, but a tip I am still trying to master. My parents arrived on Tuesday before Thanksgiving. Tuesday and Wednesday, I had a low-grade NDPH, but I was able to enjoy my parents' company and conversation. A Migraine was not interfereing and it was lovely. As I was sitting on the floor, playing with the dogs and laughing with my mom, I realized how wonderful it was. I wasn't alone. I was enjoying myself. I had people to talk to and to listen to. It was great.

Thanksgiving Day arrived and so did menstrually related Migraines and severe cramps. I attempted joining my parents to watch the Macy's Thanksgiving Day Parade (one of my favorite family traditions). But I had to make a hasty retreat to my bedroom for darkness and quiet as all the symptoms of a Migraine settled in. I ended up spending the whole day in bed away from all of our guests. I ate my mom's beautifully cooked meal in bed and spent most of the day in a medication/pain haze. I did venture out to watch part of a movie with family, but soon retreated to my quiet cave.

Although, this was not the Thanksgiving day I envisioned or hoped for, having my family together at my house brought me so much joy. I could hear their muffled laughter and pleasant conversation. I could hear them cheering or groaning while playing a board game. In the past, I had the reaction of being jealous that I was not present. But, this time, I was so happy that they were even there. I usually spend my days alone. And to have a house full of family was a huge blessing.

Holiday Tip #6: If the holidays do not go as you'd hoped or planned, try to find something to be glad about.

Best wishes this holiday season for finding enjoyment despite Migraine disease.

Thursday, November 27, 2008

Upcoming Posts and Thanksgiving

I've been MIA for a while because of health issues. I hope to back in the swing of posting soon.

Look for Upcoming Posts on These Topics:
A Migrainuer's Inpatient Hospital Stay: What to Remember
Cervical Facet Blocks: Redux

Because today is Thanksgiving, I want to say to my Migraine friends, that I am extremely thankful for you. Your support, advice, information and input is invaluable. Today, I am celebrating that we are in this together.

Happy Thanksgiving!

Sunday, October 26, 2008

My Hospital Migraine Art

From October 17 to October 24, 2008, I was an inpatient at Diamond Headache Clinic Unit at St. Jospeph's Hospital in Chicago. One of the sessions I attended was art expression. I had the chance to express what my Migraine looks like. My picture along with others, were hung in a common area and shown to staff to help them get a better understanding of what Migraine feels like to different individuals.

The writing reads "DO NOT LEAVE ME ALONE. I am in here. Somewhere."

Thursday, October 16, 2008

Update: Cervical Facet Blocks

***Please note, I have put together an updated overview of my cervical facet block experience. You can see that post HERE.***

I wrote about my experience with cervical facet blocks about a month ago, entitled Cervical Facet Blocks: Undercover Investigative Report. I am now almost five weeks post-procedure, and would like to give my readers an update.
The soreness/pain from the actual block itself lasted a full seven days. After that, I had relief for about three weeks. At the three week mark, the moderate neck/back of the head pain returned. The moderate pain only lasted a couple days and then became milder.

I saw my physiatrist at the Chicago Institute of Neurosurgery and Neuroresearch on Oct. 7th for a follow-up appointment. A physiatrist is a
doctor that specializes in diagnosing and treating pain with the end goal of returning function by using non-operative means.

My physiatrist's reaction to my level of pain relief was mixed. I asked him if he thought my procedure was successful. He pointed out that "successful" is subjective. Just because my pain only subsided for a few weeks does not mean the injections were not successful. In fact, it sounded as though the injections are just as much an investigative tool as a tool to provide pain relief. He found out that the location was good, but perhaps I needed another set of injections to provide longer relief.

The cervical facet blocks did not affect my Migraines at all. He seemed disappointed with this, but I had not expected it. According to this doctor, some people get relief if the neck is the location of origin. My Migraines definitely have not decreased in frequency, but increased because of other reasons. He said that I may have a continual battle with my neck because my neck is holding up my head, the source of my Migraines. Supporting a hurting head can cause neck tension and pain. That makes sense.

My physiatrist has been wanting me to utilize my beloved physical therapist. But, the last few months I have been home bound because of my frequent Migraines. (That is another story for another post.) But, at his urging, I must find a way to PT twice a week. I made it to my first session this week although I was using my abortive and rescue medications to make it possible. The PT said he could visibly see the tension in my neck. I left the session with my neck more sore than when I went in. But it felt good to have my neck massaged and stretched.

Aside from physical therapy, the plan is to do another round of Cervical Facet Blocks in the same locations, and to add an Occipital Nerve block and a C2 root block. These will be done at the beginning of December.

In reading the information given to me by the physiatrist, these blocks are not meant as a "cure". They are meant to enable the me, the patient, to participate in therapy or an exercise regimen that pain would otherwise prevent me from attempting. Again, it seems like these blocks are a tool to discover from where the pain is originating. Said doctor mentioned there are lots of other paths to take if these do not pan out.

CINN's website gives more detailed information into the different types of treatment for neck pain. Click HERE if you are interested.

I'll keep you updated on my progress.

Monday, October 13, 2008

October Headache & Migraine Disease Blog Carnival

The October edition of the Headache & Migraine Disease Blog Carnival is up at Somebody Heal Me. The topic is Migraines and Depression.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on the complicated relationship between depression and migraines and other entries on topics related to headaches and migraines.

Sunday, September 28, 2008

taking ME out of MigrainE

Richard M. Cohen, who is the husband of Meridith Viera (co-host of Today show), has had MS for the last 30 years and endured 2 bouts of colon cancer. He is the author of a memoior, Blindsided, about his experiences with his illnesses and is also the author of Strong at the Broken Places, a book about the lives of five people with chronic illness. He first came on my radar when I was watching The View last year as he was interviewed by the five co-hosts. I cried through Mr. Cohen's entire interview. The questions they asked about suffering with a chronic illness were insightful. His answers were inspirational. Mr. Cohen said he is not his disease. Out of everything he said, that was what stuck with me. You are not your disease.

I may not be my disease, but I certainly struggle a lot with my disease not intruding on how I view myself. My husband reminds me frequently that my Migraine, my NDPH (New Daily Persistent Headache) and I are not one in the same, but it is difficult to make that a regular thought process.

Since my Migraines and NDPH abruptly started October 26, 2005, my life has significantly changed. I frequently liken it to the death of the old ME. My Migraines and NDPH became the new ME. The old ME loved her job as a speech language pathologist serving three to five year old children with mild to severe disabilities. She worked long hours with dedication and loved to make those kids feel special. The old ME volunteered at a food pantry where I was an apprentice leader. Part of my job was to give food to those people who came in, but my favorite part was sitting down and listening to what was going on in the lives of these people who were hurting. I enjoyed praying with them and giving them hope. The old ME hung out with friends after volunteering, at church, after church and throughout the week. The old ME was a girlfriend and a fiance who gave as much to the relationship as she got.

All of us at one point and time has thought, when I die, I will really be missed. But, when someone passes away, life still has to go on. Eventually life returns back to a new normal. When my life was interrupted abruptly by Migraine disease and NDPH, my old life stopped, but everything proceeded without ME. My job was filled by a new speech pathologist. A new apprentice leader took my position as a volunteer at the food pantry. Friends who I saw at work, church and the food pantry slowly fell away. Acquaintances became non-existent. I lost friends. I was out of sight and out of mind. In my relationship with my then fiance and now husband, he became the caregiver and I became dependent. Everything changed.

My old self died. Some of that is good. I used to be a perfectionist. I used to have to be in control. I was extremely scheduled and had an unending list of things to do. I was actually a little obsessive compulsive. But, dealing with a chronic disabling illness, I could not be in control of most things and had to come to terms with that. I stopped having a schedule and became more flexible. Instead of a calandar of things to do, I would write down what I was able to accomplish after the fact. I had to change and grow. This part of the new ME that I like.

But, since my life has changed so drastically, it feels as though I have slowly morphed into my disease. Am I my Migraines? Am I my NDPH? Where as my life used to feel unlimited, now I am defined my my limits. My friends have stopped calling because they do not want to bother me if I am not feeling well. When I do communicate with them, their emails consist virtually solely of asking me how I am. I have to encourage them to share with me about themselves and actually answer my questions about what is going on in their lives. My husband freqently has to take care of the basic household chores I am responsible for because I am not able to accomplish them. We've even taken advantage of online grocery shopping, Peapod, because I have been unable to make it out of the house to run errands.

It is a very difficult task for me not to see myself as my Migraines. Whether or not I am able do the chores around the house such as laundry or cleaning is iffy. Whether or not I make the gamble and schedule an appointment is risky. Whether or not I dare to make plans to see friends is rare and if I actually make the date is even rarer. Everything is dependent on if I have a Migraine or my NDPH pain is elevated.

Who am I now? I know who I used to be. I liked that girl. I used to have the ability to serve others, to love on kids, to listen to those who were hurting and to pray with those who needed it. But, since the onset of my Migraines and NDPH, the focus became on ME. I could not give to others anymore. Others have to take care of ME.

I am still trying to figure it out. But, I know I do not want to be my Migraine. I do not want to be my New Daily Persistent Headache. I want to know who the new ME is.

I am left pondering Ecclesiastes 3:1-7
"There is a time for everything and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace."

Wednesday, September 17, 2008

Cervical Facet Blocks: Undercover Investigative Report

***Please note, I have put together an updated overview of my cervical facet block experience. You can see that post HERE.***
Well, I was not undercover. The purpose was not investigative. But, I will report. Actually, the cervical facet blocks I received on Friday, September 12th were so that hopefully, I would receive some relief from the neck and back of the head pain I've been having. But, since I was nervous and a touch scared of the procedure, in order to get through it, I told myself I was an undercover investigative reporter. And here is my faithful report of everything I have learned about the procedure along with my personal experience.

A cervical facet block is also known as a facet joint injection and is similar to an occipital nerve block, but the injection is in a different location. The cervical facet block breaks down to this: cervical= neck, first 7 vertebrae of the spine; facet= paired joints in the spine that provide support and contain tiny nerve fibers; Block= block pain.

Basically a cervical facet block is where the physician injects lidocaine and a steriod (in my case, Decadron) into neck joints in attempt to decrease pain. The physici
an typically uses an X-ray to see where to put the injection.

A great illustration of bilateral cervical facet blocks is found HERE.

I have been having neck pain and back of the head pain since March of this year. My headache/Migraine specialist referred me to a physiatrist that specializes in neck pain. He sent me to a physical therapist. Physical therapy brought me minimal if any pain relief. So, my physiatrist scheduled bilateral cervical facet blocks at the first joint in my spine called occipito-atlanto joint which connects the base of the skull to the spine, between C1 and C2 (first and second vertebrae of the sp
ine) and between C2 and C3 (second and third vertebrae of the spine).

I arrived at the neurological hospital on Friday with sunglasses on. Not just arriving in style, but anticipating the migraine trigger-happy fluorescent lights of the hospital. I checked in at the registration desk, was directed to another floor and eventually my room. The nurse told me I would be taking a pregnancy test because they use a fluoroscope (x-ray) to find the joints during the procedure. I was also asked to change into a very fashionable hospital gown. The surprise came when I was allowed to wear only the hospital-issued socks under my gown! I
asked the nurse why nothing was to come between me and my hospital gown for a neck procedure. She said it was for anesthetic purposes. Germs are carried in on clothes.

An IV was started and I was given IV fluids for the 6 hours I was there. They did a bleed test where they pricked my skin to make it bleed and timed how fast it clotted. They also drew my blood for other tests. I was brought to the pre-op room and the wait continued. 40 minutes later, the anesthesiologist, the nurse and my physician all came to talk to me.

Every time I have talked with this physician, I feel like we are his back porch at a BBQ. He's very laid back, propping his ankle up on his knee. Yet, he explains everything very professionally and is an exceptional listener. He turned off the lights in the whole pre-op area because he recognized they might be bothering me. His calming nature diffused my nerves.

I was wheeled into the operating room and the nurse told me to lay on my stomach with my face in a sponge-like thing with cut out for my eyes and nose. They gave me oxygen via a nasal canula. My arms were at my side, I was wrapped up like a burrito and finally strapped to the table. I wasn't going anywhere. I felt like my IV was pulling and when I mentioned it to the nurse, the anesthesiologist said the medication might be stinging. That was the last thing I consciously remember.

My biggest fear about the procedure is that I would wake up during it. The nurse told me that I would be sedated enough so I would not know what was going on, but would wake if shaken.
The anesthesiologist said I would be taking a good snooze.

I do remember three things that happened during the procedure. But, it was not as though I fully woke up and two of the three remembrances probably happened as I was falling asleep or partially waking up. The first I remember was someone slathering my neck with
something. The second thing I remember was my physician doing something at my neck. The third thing was when I clearly heard people discussing an allergic reaction I was having after I was rolled from the operating table onto the stretcher. But, I did not wake up. I am assuming that is because they gave me IV Benadryl which probably made me sleep more.

I woke up in the recovery room. I was itchy and that is when the nurse explained about my reaction. But, she was not sure what it was to. I still felt very out of it, so when the nurse asked if I was ready to go back to my room, I responded with "I'm cold." I was actually shivering
and my teeth were chattering. She wrapped my head and put a heater on my lap. Later, when I woke up more, they wheeled me up to my room. I was shaky and not stable. But after eating a turkey sandwich, my first meal since the night before, I was feeling a bit better.

Oh, but did I mention, I was SORE! My neck and back of my head felt as though it had been ripped off. I knew I was getting needles in my neck, but oh my. We had to drive home in rush hour traffic, but thankfully the sedating medications were still having some effect. The next two days, I laid in bed all day and was kept up due to pain at night. I could only lay in one position because my back of the head and neck were hurting so much.

So, now, I'm 5 days post-procedure. My neck still hurts. I was told that the steroid could take up to a week to kick in. I'm still waiting. I will see my physiatrist on October 7th to debrief. Treating pain is quite an adventure. I'm definitely learning a lot in the process and I hope to continue to pass that along to you.

(In the picture of my neck, there are only 4 band-aids but I actually got 6 injections, the other two are higher up and towards the outside of my head.)

Wednesday, September 10, 2008


I joined the blogging world not knowing what it would mean for me. I have found the posts of fellow-bloggers helpful and insightful. I have learned so much and opened my eyes to many ideas I never would have thought of before. I also did not realize that there were people out there who could not RESPECT that people do differ in opinion.

In our struggle to understand our diseases, all people with invisible chronic illnesses, including those of us with Migraine, are trying to find out what works best for us. Whether it be medications, relaxation, biofeedback, acupuncture, chiropractic, counseling, crystals, meditation, prayer, physical therapy, exercise or diet, we all are searching how to best manage our illness.

When I joined the internet world, and specifically MMC forums, I found a host of people who are caring, loving and supportive, but who would also light a fire under my behind when I need it. I am so thankful for having these people in my life. The way I handle my migraine treatment has significantly changed for the better now that I know them.

However, these people, my internet family/friends, first earned my RESPECT, not by pushing their view on me and not by condemning me for mine. None of us has the answer to how to treat migraine the best way. So, we realize that we can discuss ideas, inform each other of new techniques, share suggestions and even agree to disagree. If your opinion differs than mine, I most gladly would like to hear it. I welcome suggestions from everyone because I certainly do not "know it all" about Migraine disease. However, neither do you. And once we both realize that and have mutual RESPECT for one another, we can collaborate ideas and find better treatment for ourselves accordingly.

Medications: A Love-Hate Relationship

I look forward to the day where medications do not rule the roost as much as my Migraines and NDPH do. Months of trial and error, dealing with side effects, and waiting months to even see if the new preventative I'm taking is effective makes this whole medication ordeal quite exhausting.

Medications and I have a love-hate relationship. If I have found the right medication to treat what is ailing me, it is like someone has flipped a switch in my body. I'm not "normal" by any means, but I am able to start to experience my life. For example, when taking Frova (an acute migraine medication called a triptan), my menstrual migraines are extremely decreased in severity. Finally, I do not have to experience weeks of unending pain surrounding my menstruation that keeps me bed bound any more.

However, the flip side is that I am extremely sensitive to medications. While Frova is a godsend, my body is very sensitive. It does not seem to like any medication that messes with my serotonin levels. So, at the end of 4 days of taking the medication, I experience mild-moderate anxiety.

Through trial and error, I have found that tricyclic antidepressants, SSRIs, SNRIs and most recently Zonegran induce severe anxiety and panic in my body. These medications are supposed to be helping my body, but my sensitive body revolts at ingestion.

Other medications such as Zofran (for my nausea) let me be. They treat my symptoms without raising any difficulties with unwanted side effects. Oh, I wish it were so easy with all medications.

I feel as though I am stuck between a rock and a hard place. How do I find the right medicaiton for my head if my body continues to revolt? It is a frustrating question for me to face myself, much less the parade of questions I get from those who love me and only want me to feel better.

I feel helpless being at the mercy of the medications. I have a rescue medication I vowed I would never take again because of the awful side effects it gives me. But, increased severity and frequency of my migraines this week (most likely because I stopped the Zonegran, a migraine preventative), it was my only option that I knew would halt the pain. I suffered tremendously from the side effects. But in those moments of severe pain, I will tolerate almost anything to make the migraine halt. It is basically survival mode. I have stopped living and I am only surviving.

I am currently in a holding pattern now. I have a cervical nerve block for the pain in my neck on Friday. And I see my headache/Migraine specialist on Tuesday. But, getting through each moment is a struggle.

And when I see my specialist and start my new preventative, it is hard to be optimistic. It is hard not to be scared of the possible side effects. Usually, I get them! This will be another trial in a list of unending trials. I wish I had hope enough to know that this next medication is the one. After suffering so long, it is difficult to muster up the hope. But, I will. Any change is progress. I tell myself that if this next preventative does not help or the side effects are too awful, it will be one step closer to discovering the medication that will help me.

I know this is only one part of my journey toward better management of my migraines. And, I tell you, I am ready to be done with this part.

September 2008 Headache and Migraine Disease Blog Carnival is up!

The September 2008 edition of the Headache and Migraine Disease Blog Carnival is up at Somebody Heal Me!

Generally speaking, a blog carnival is a collection of links to a variety of blogs on a central topic. The Headache and Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us.

This month's edition focuses on Doctor Patient Communication. Click HERE to link to the carnival.

Monday, September 8, 2008

Invisible Illness: Advice For Caregivers From a Caregiver

I asked my husband if he wouldn't mind sharing his experience what it is like sharing life with someone with an invisible illness and sharing some advice for others in his same position.

-How does having a wife with an invisible illness affect you?
"It affects me in how it affects you (Kelly) or frustrates you (Kelly) that people do not see."

-What is your advice for caregivers of people with invisible illnesses?
"Have patience and endurance and take care of yourself."

-What do you mean by "take care of yourself"?
"You need to realize that you do need time for yourself. You need to do whatever it is for you that rejuvenates you. Recharge, de-stress and do what you can to make time for those activities. There are sometimes when you aren't able to take time for yourself. But, you have to try to find a way to fit it in.
If you let yourself get to a point where you are running on empty, you don't have reserves for when it gets tougher. You need to be prepared for the times when it takes endurance."

-What are some examples of things that rejuvinate you?
"Volunteering at food pantry. Going to church. Lying on the couch and watching tv. Getting into my interests and having fun with that."

-What is your advice for other caregivers who come in contact with those who do not understand invisible illness?
"Especially for invisible illness, just remember that people probably are not going to understand, at least not right away. Patiently explain when they don't. They may care, but don't understand. It is easy to recognize when someone is in a wheelchair that a person is suffering because it is visible. Sometimes, I will tell people you (Kelly) are doing bad again and they will say "But she looked so good when I saw her." I tell them "she looked good, but she was toughing it out." Say things that let them know they may not be able to see the pain. Just be honest that yeah, you often can't see when she is suffering. Explain it plain and simply."

Special thanks to my husband, George, for this interview.

Invisible Illness: You Can't Judge a Book by its Cover

Those of us who have invisible illnesses know what it is like not to feel validated in our illness. The old adage, "You can't judge a book by its cover" certainly applies. One of the biggest lessons I learned since my migraines and New Daily Persistent Headache (NDPH) started is that you cannot really know what is going on in people's lives just by looking at them. If I had a built in band-aid on my head that showed up when I was migraining or having head pain, possibly people would see I am hurting more often then they think. I do not want attention for my pain, but understanding. Sometimes the pain that others do not see affects my decisions.

"But you look so good" does not apply. Why not? Despite how I am feeling, I want to enjoy my life. My pain is always present, but that does not mean I always want to focus on it. So, I smile and I am "up" despite how I feel or the effort it takes. A smile on my face does not mean that I am feeling okay. But it does mean that I want to attempt to enjoy my life. People with invisible illnesses want to live too, despite the pain. So what you see, may not be the whole story.

When people do not understand that we are hurting despite our invisible illness, when they judge our book by the cover, it is important to remind ourselves that it is an opportunity and take it as such. Often people do not understand the facts of our disease and that it may not be or is not visible. If I had a friend with an invisible illness, I think I would want to know about her pain so that I could understand more of what she is going through.

In conclusion, others may judge our book (our illness), by our covers (how we appear). But, it is ultimately up to us to educate our family, friends, peers, co-workers, neighbors and strangers by letting them know what is really happening.

Friday, September 5, 2008

Reading "YOU: The Smart Patient" as a Migrainuer

If you have ever read any of the YOU books by Michael Roizen, M.D and Mehmet Oz, M.D., you are familiar with their desire to present essential information that is not diluted straight to their readers. Their approach is humorous in a way that helps you remember what you are reading. I am especially fond of YOU: The Owner's Manuel. If I had only had this book in college biology, I think I might've gotten an A.

Another fantastic book by the same authors, YOU: The Smart Patient, is an insightful read particularly because it is written by doctors for patients. While keeping an intellecutal yet humorous manner, they let their hair down and share insights on health care from their perspective. As a Migraineur, I found this book particularly helpful because although it is directed toward the general population, it contained nuggets of information that specifically informed my experience as a Migraineur. YOU: The Smart Patient also educated me on important topics such as alternative treatments and getting a second opinion.

Dr. Roizen and Dr. Oz emphasize the importance of "finding Dr. Right." They have a section on questions to ask a doctor's office when choosing a doctor and examples of answers they judge as "good" or "shaky". The following question they proposed may be helpful for migraineurs to ask of neurologist offices: "Which types of patients does the doctor usually see?" Using the author's example answers in context of Migraine, a "good" answer would be people who have similar health issues to you such as Migraines/headaches. A "shaky" answer would be people who have health issues that are not similar to you such as stroke or degenerative diseases.

Another question they proposed that would be helpful for Migraineurs is "Is the doctor especially qualified to treat patients with your condition?" Their suggestion is that a "good" answer would be affirmative with examples of how s/he is qualified by training or special certification. A shaky answer may be if they do not give any reason why they are qualified. For Migraineurs, it is important to know that the neurologists that we see are indeed specialists in Migraine/headache. For more information on what makes a neurologist a Migraine/headache specialist, check out this article: Migraine and Headache Specialists - What's So Special? by Teri Robert.

In YOU: The Smart Patient, the authors include a checklist on what to bring to an appointment. One item I thought particularly helpful was a tape recorder with a blank tape and fresh batteries. Even when taking notes, I still forget some of what my specialist says. A tape recording of my appointment would enable me to review my Dr.'s reactions to my symptoms & side effects, his
answers to my questions, his prescribing directions, and his reasoning for new medications. Of course they suggest writing down specific questions that you want to discuss ahead of time.

Dr. Roizen and Dr. Oz suggest asking questions every time your Dr. recommends performing a test (i.e. MRI or CT scan) and when s/he prescribes a new prescription. Though their suggested list of questions is long, some, key questions stick out, such as: "What is this for?" "Why do I need it?" "What can go wrong?" "What are common side effects?" and "How should I take this?"
An informed patient is a smart patient.

Making friends with your pharmacist is also recommended because they are a very readily available and knowledgeable source of information regarding prescriptions. And this book, in fact, is very informational about medications in general. Medications are listed with potential interactions. This is essential knowledge for Migraineurs because often we take more than one medication, which could potentially result in unwanted side effects.

On the sometimes delicate topic of getting a second opinion, Dr. Rozien and Dr. Oz say "Never think twice about getting a second opinion." "We can be wrong and we can be wrong a lot." Hearing a doctor admit they can be wrong is refreshing, but also gives more importance to the caution we need to take when thinking about the treatment we are receiving from our specialist. Perhaps it is time to push our doctor about considering other treatment options. Or perhaps it is time to get another opinion on treatment options. Sometimes more heads bring more and better ideas.

However, the authors did warn the reader that scam artists often swarm to and target those who have chronic health conditions, such as Migraine. If something sounds too good to be true, it probably is. They say to watch for "claims supported by unidentified studies or testimonials from people using phrases like 'it saved my life, improved my sexual performance, and buttered my bread, too." They also warn about treatments that boast curing unrelated problems such as dandruff and boosting short term memory. Getting a second, third and fourteenth opinion is sometimes necessary and helpful, but make sure to bring your thinking cap along.

According to these doctor authors, being a smart patient is being a smart detective, and as the anology holds, "no smart detective would hang his whole investigation on a single witenss's story without making sure it checked out." Investigate. Read. Question. Educate. This is how we can further our chances for finding the best Migraine treatment out there.

Another great chapter for Migraineurs to check out is the one on alternative treatments. The importance of sharing with your doctors all alternative treatments you are receiving is highlighted. Additionally, the authors expound on the differences between the alternative treatments in which Americans reportedly spend fifty billion dollars a year. The treatments discussed include the following: chiropractic, acupuncture, naturopathy, homeopathy, massage, hypnosis, supplements, vitamins and herbal remedies.

YOU: The Smart Patient has so much helpful information on these topics and others including surgery, hospitals and hospital stays, patients bill of rights and health insurance. The book is a must-read for all people who are patients (and who isn't?), especially Migraineurs.

Sunday, August 31, 2008

Sunday, August 3, 2008

July 29, 2008 Headache Specialist Visit

I saw my migraine/headache specialist on Tuesday, July 29th. I had a list of items I wanted to change in our management plan of my migraines. Overall it was a very quick visit, but extremely helpful visit.

I heart my migraine/headache specialist!

As a preventative medication for my migraines, I have been on Lyrica since January. While Lyrica seemed to decrease the number of migraines for a couple of months, in the last couple months, it did not sustain the decrease. In addition, I was having side effects of memory loss, word finding difficulties, increased appetite (insatiable) and weight gain. The memory loss has been affecting my daily life in that I could not remember what I do from day to day or sometimes what happened a few hours ago. Since going on the Lyrica I had gained 10 lbs and despite being on Weight Watchers (around 1000 calorie/day diet) and exercising 5 days/week, I was only able to maintain that weight not lose it.

So, a change was called for and Dr. Headache Specialist agreed. Now I am tapering off the Lyrica while tapering onto Zonegran. Zonegran is in the same class of medications as Lyrica, an anti-convulsant, so I am hoping to find some success with this.

As an abortive, I was trying Treximet, a combination of Imitrex (sumatriptan) and Aleve (naproxen). I was having mixed results with the Treximet with some uncomfortable side effects. So, the doc changed me to Zomig.

Overall, I am very optimistic about these changes. I am really glad I am stopping the Lyrica. And I am hopeful this new regimen will give me even more migraine-free days.

Although, so far, I have had a migraine every day since my specialist visit! Go figure!

Not Words, But Presence

There is probably a lot of psychology behind why we say what we say to people. Moreover, I am sure there is a lot of psychology behind why people say what they do when they hear we are suffering from migraines. I'm sure compassion often has something to do with it mixed in with wanting to say something helpful. But, alas, I am not a psychologist. I am just a migraineur who is given the pleasure of hearing these phrases, mottos, axioms, adages and proverbs whenever she ventures out into the world of the 'temporarily-abled'.

Some common ones I hear are as follows:

1. But, you look so good. (If I had a nickel for every time I heard this, I'd be a millionaire.)
2. Let go and let God.
3. This too shall pass.

Each of these make me cringe for a different reason. Although I am known for my wordiness, I will keep my rebuttal short for now.

1. I have an invisible disease.
2. I keep trying to let go, but they keep returning.
3. Yes, and then it shall come again.

When I have heard these sayings, I have trained myself to become glazed over and thank the person for their slap in the um I mean kind words.

I do, however, want to address the following phrases.
Everything happens for a reason.
5. God won't give you more than you can handle.

Not being the psychologist that I am not, I believe that people often find these sayings to be helpful in their own difficult times. Therefore, they relay their consolation to others hoping to share the reassurance they have found themselves.

As a migraineur, it is quite obvious why hearing "everything happens for a reason" is not top on my comfort list. The severe pain I frequently experience is quite unforgiving and each migraine can be hell; not to mention, I suffer from daily pain as well. With that, I would not find solace nor could I ever believe that my pain is for a reason. Through my journey through migraines and New Daily Persistent Headache, I have learned much, gained much, and drawn closer to my husband in direct result of having the pain. (See my previous entry Gift of Pain for expansion on this.) However, I do not believe that the migraine disease or NDPH were the only possible means to that end. Nor were my gained knowledge, spiritual growth and closeness to my husband reasons for my pain. God could have and would have brought me to this place through whatever happened in my life. I do not believe it was part of God's plans for my life to give me migraines or NDPH. The knowledge, growth and closeness were happy occurrences that happened as I lived through the pain. But, shall I also list what I have lost because of my pain? My job, my independence, my ability to serve in a way that brings me joy, my friendships and other nameless things that can only be understood by someone in my shoes. The list is some days not comprehendible to me. Do I believe that God can take bad circumstances and turn them for good? Yes. (Romans 8:28) Do I believe that God has a plan for my life? Yes. (Jeremiah 29:11-13) There are many things I do not understand about God and how He works and my pain and why He does not take it away. But what I do know for sure is that there is no reason for my pain. It just is.

The other phrase that I actually hear quite often is "God won't give you more than you can handle." As a disclaimer, I am not a bible scholar. I am just a Christ-follower trying to find her way. So, please take my words for what they are, just my opinion. I believe people take this phrase from the following verse in the Bible: 1 Corinthians 10:13 which says, "The only temptation that has come to you is that which everyone has. But, you can trust God who will not permit you to be tempted more than you can stand. But when you are tempted, he will also give you a way to escape so you will be able to stand it ". Often, we Christians take verses out of the context in which they were written, paying sole attention to what we want the verse to mean and forgetting what the verse was written about. Plain and simple, this verse was written in the context of temptation, not suffering. In addition to debunking this saying via scripture, my experience has proven this statement false. I have gone through more than I can handle physically and emotionally and God has allowed it. My pain and suffering has been beyond words, beyond tears, beyond screams, and beyond understanding how a loving God could allow me to suffer so much. And, yet, I have.

I do not find comfort in sayings. I find comfort in presence. Sometimes presence is in words that are meant well. But most often it is in the silent presence of a loved one who is simply with me in the pain.

I do not understand, nor will I ever pretend to understand why a loving God allows such suffering. But, I do know for certain that God has promised to be with me even when I am not aware of his presence.

"Where can I go from your Spirit? Where can I run from you? If I go up to the heavens, you are there. If I lie down in the grave, you are there. If I rise with the sun in the east and settle in the west beyond the sea, even there you would guide me. With your right hand you would hold me." Psalm 139: 7-10

In that, I find comfort.

Thursday, July 24, 2008

I choose to be a Survivor.

Anyone who has experienced chronic migraines or headaches has surely felt sadness or anxiety about them. They can be overwhelming and make one feel very helpless. Chronic migraines and headaches sometimes seem as though they are driving the bus.

When I experience migraines and of course my daily headache (NDPH), I often lose heart. I can feel as though I am at the mercy of my disease. And rightfully so, since my life revolves around whether my head is "good enough" or not.

I do not work because my head is not able to handle it. I rarely go to church because my head cannot handle it. I rarely get together with friends because my head cannot handle it.

"It is not fair."

Ah, this has been a frequent phrase in my conversation with myself, with God, with my husband. And, it very well may be that it is not fair. So many things have happened outside of my choosing as a result of this disease. But, how does this help me walk through the pain?

"It is not fair" may help me momentarily cope with what seems like unimaginable circumstances, but the long term damage is that I become a victim to the disease. And, in result, I turn deeper in my despair.

I do not want to be a victim. I want to be a survivor.
This disease means that there will be many battles ahead. I want to focus on what will bring me through each migraine and back to my life. I want to carry close to my heart thoughts that will daily encourage me to walk through my NDPH. I want thoughts I can hold onto that will bring me through the battles that wear me out and pull me down. I want thoughts that will hold me up when I am horrified by what I am having to face.

One of the things that has bothered me the most about having disabling migraines and NDPH is this loss of control in my life. Since there are an abundance of things out of my control, I decided to come up with a list of things that are in my control. It is not very long, but it is extremely helpful.

My list:

1. My Diet- This means I have a choice what I put in my mouth.

2. My Exercise- This means when I am able to, I have a choice to keep my body active.

3. My Head Game- This means I have a choice in how I think about my migraines and NDPH. And, I can choose
how I react to them.

May it be written on the back of my eyelids that even when everything else is taken away, I still have control in regards to how I react to the situation I am facing. I still have a choice.

I choose to be a survivor. Onward into battle.

Article - Why Migraines Strike

Some of my fellow bloggers have brought to my attention this wonderful article by Scientific American. I had to post it as well. My dear readers, please check this out.

Why Migraines Strike

For a great synopsis, check out From the Lake to You - Great Migraine Reading on Megan Oltman's blog.

Monday, July 14, 2008

July Headache Blog Carnival

The July edition of the Headache & Migraine Disease Blog carnival is up at Somebody Heal Me.

July Headache Blog Carnival -- How Spirituality Helps Us Cope With Migraine Disease

Generally speaking, a blog carnival is a collection of links to a variety of blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.

Friday, July 11, 2008

From Despair to Hope

The onset of my migraine disease and New Daily Persistent Headache was sudden. One day, I was functioning, the next day, I thought I was dying. And I was not being dramatic. Before my migraines, I had a naïve way of thinking. I thought that when you got to a certain level of severity of pain, you died. And when I did not die from this incredibly horrific migraine pain, I certainly wondered what the heck God was thinking. How could he allow this? And all at once, I had compassion for so many who had suffered from pain so great.

As migraine disease and NDPH disabled me, my life took a drastic switch from busy and fulfilling, to slow and empty. I was angry at God. I felt alone. I did not understand. My faith in God had been unshakable up until that point. And, as my days with constant pain continued, I saw that I had a choice: To love God, the one I believed could relieve my pain, or not. God was not choosing to relieve my pain. And I struggled with that.

As I have had constant pain since the onset of my disease, waking up to a new day has sometimes been very difficult. I could not see any hope for my future because the pain was not relenting. Especially when I hit the one year mark and then the two year mark of daily intense pain, I realized my new normal was pain. I could not remember what it felt like to not have pain.

I got to a point where I doubted my faith and had given up on hope for anything to improve. I read something by Henri Nouwen, a catholic priest and author. In the book, Inner Voice of Love, Nouwen’s diary from when he experienced severe bouts with depression, he wrote the following: “Your main question should always be whether something is lived with or without God.”

God had let me down. He had not protected me from pain and suffering. So how was I to trust, love and believe in him? My faith had been shaken. But, Nouwen changed my mind. I decided I wanted to live my “something,” my migraines and NDPH with God. Regardless of if I had hope or faith or what, I want to live it with God. Logically, I decided that having God in my life is much better than without Him, even if my pain remained the same.

But what about hope? I wanted hope that my migraine disease and NDPH would be significantly better if not cured. But, as I discovered, that is circumstantial hope, hope that is dependent on those circumstances. If I became soley dependent on the hope that my circumstances would change for the better, I would feel very let down when they did not change how I thought they would. When I did not improve or when the pain racked my body again, I felt scared and alone. I questioned how I could continue when I was repeatedly disappointed. I often times would despair.

I could not ride the roller coaster of circumstantial hope. I had to find something more secure that I could depend on. I needed something to keep me walking forward despite my circumstances and that was Jesus. He died for me, for all of us. He gives me hope for a new life in Him. In Him, there is hope that someday there will be no more pain and suffering.

As I walk through my life, Jesus is walking beside me. He cries with me when the pain is unbearable. He holds me when I am weak. He is my strength to continue when I just don’t think I can stand another minute. Knowing that he cares about me and loves me so much, gives me hope.

And hope is intregral in continuing to fight the battle of my migraine disease and NDPH.

Faith is being sure of what you hope for and certain of what you do not see. Hebrews 1:11

Friday, June 13, 2008

The Gift of Pain

So, I was reading a book that I kept flinging against the nearest wall. I would pick up the book off the floor and read some more until the book would go airborne once again.

As I made my way through the book, The Gift of Pain, I was more than a little bothered at what I was reading. The book asked me to believe in the impossible: that pain is a gift.

Eventually, I came to understand the premise of why the authors viewed pain as a gift. One of the authors, Dr. Paul Brand, worked with people with leprosy (in India and in the U.S.) for most of his life. He discovered that a big reason people who have leprosy have deformities are because they lack one important thing: the ability to feel pain.

A person who has leprosy may put her hand on a stove and not retract it because she does not feel it to be painful with an obvious result of possible severe burns. Dr. Brand discovered that people with leprosy often did not tend to wounds because they were not painful and infection would develop. The examples go on and on where pain would normally protect the body, and its absence caused injury/disease/amputation/death.

After working for five decades with people with leprosy, it is an understatement to say that Dr. Brand developed an appreciation for pain. For him, pain is good, a gift even.

I understand Dr. Brand's perspective. However, one of the main reasons my copy of his book kept hitting the wall with force was because my migraine pain, my New Daily Persistent Headache pain did not seem to fit into his understanding of pain. My pain does not tell me that something is wrong. It just exists.

How could I ever see my pain as a gift? I have many reasons why my migraine pain, my NDPH pain is a burden. I have not been able to work for the last two and a half years. My friendships have suffered. I am homebound much of the time. I miss out on activities I used to do. The list goes on.

But, I could not dismiss the book. I felt the challenge to discover reasons why my pain is a gift. And, I did, but perhaps not in the sense Dr. Brand or his coauthor were suggesting.

Through things I have lost, there are things I have gained. It is hard to put into so many words all the things I have gained as a result of my pain. A lot of what I have gained are moments of enlightenment. I learned things about myself, such as I needed more of a balance in my life instead of pushing myself to the limit. I learned to stop caring what others thought of me. If I had to go to a store with side effects of medications making me incoherent, I had to let go of what people might think when they saw me and/or talked to me. These experiences brought me freedom.

I found how I could be there for others in a different way than I had in the past. I could participate in my support network in the forums at MyMigraineConnection. I discovered my new "job" of praying for others. I used to pray for people, but never had the time to truly devote to everyone in my life. My compassion for others has greatly increased. Having to "detox" off of pain medications that had induced Medication Overuse Headache gave me compassion for others in similar situations. Having to drive cautiously and slowly because my preventatives have slowed my brain down gave me patience for the car in front of me who is driving slow.

Most importantly, this disease has solidified my relationship with my DH. We were engaged just ten days when my migraines and NDPH started. We have had to walk through the fire, but it has refined us. I believe that we have a closer relationship now then we ever would have had if we had not had to deal with all these obstacles so early in our engagement and in our marriage.

Dr. Brand and his coauthor, Phillip Yancey wrote in The Gift of Pain, "Gratitude is the single response most nourishing to health." The reality of how the pain has affected and changed my life is sometimes difficult to swallow. But, I feel challenged to continue to find how to be thankful through and despite my pain.

Here I am

Hello blogging world.

I am not exactly sure what I am going to share or how I'm going to share it. But, I am excited, none-the-less, to send my thoughts out there and see where they go.

My blogs will probably hover around the topic of how Migraine disease and New Daily Persistent Headache affect my life as well as how my faith in Jesus affects my perspective on those.

I am looking forward to sharing, learning and discovering.