Lion and Lambs

I got an email from the migraine forum I belong to that announced a migraine poetry contest. Apparently in the middle of the night my brain was inspired and I wrote a poem on a page of the magazine laying by my bed. That was at least a few days ago because I have been staying at a friend’s house. I mentioned it to someone once since then, and then forgot about it until I saw the magazine a few minutes ago. My sis has been guilting nudging me to post so I figured what better way to start than with something I wrote in my sleep. (grin)

The Wolfmen

The wolfmen sit in a wild pack,
perched and ready to attack.
You sit innocently idly by,
Not one beast will catch your eye.
You go on with your daily life,
Unaware of the impending strife.
You catch a glimpse and turn to see,
The wolfman pouncing down on thee.

I remember there was more, and I was too tired and too slow to get it all down. Maybe I will sleep write again another night and finish it!

I spent about two weeks one step above dead with my migraines and chronic pain. Each day I watched the clock waiting for it to be a reasonable time to go to bed, knowing I had survived another day and it was over. I was missing a lot of work, got sent home from two classes because I looked so awful, and was barely up for taking care of and entertaining my dog as I knew I should, etc. Finally one morning I realized that this was not living, and it was barely even surviving.

I had been toying with the idea of uping my pain medication and yet I was having many fears. Tolerance, dependence, am I giving up, would it negate all the other medicine and procedures I had gone through, if I become tolerant and they need to increase the dose and then I have surgery or something and need stronger pain meds would they be effective???? and on and on and on….

Then I convinced myself of the realization that the future is too unknown and I cannot make all my decisions based on ‘what if’ in the future. If I continue to suffer with the pain, and compromise my quality of life for fear of what could happen, and then I die in a car accident next year, or they come out with new medication or better procedures, or hey, a cure, then all the suffering, the unintentional martyrdom, will have been in vain. Why can’t I ‘what if’ toward the positive?

So I decided to apply the pain patch that had been offered to me and see what would happen. Let me just say, in reference to my life as it has been, this ranks right up there with the magic bullet that Botox has been. I sleep less, function more, think clearly, connect, laugh, play, make decisions, etc. My head is soooo clear, it is shocking. So much so that I have had conversations with my pain psychologist, my docotor, to see if there is anything in it that would be like speed; something that would make me hyper or falsely engergized. The answer was no, it is just that the pain is relieved and the pain was causing so much fatigue, nausea, malaise, etc. that relieving the pain relieves all the secondary effects of pain. I was feeling so good that I was still in disbelief. Could the pain really be causing me to feel not only the severe pain, but generalized yuch (mild flu, hit by truck)? I went and questioned two different pharmacists and got the same answer. No, it is just that your pain is being relieved. I couldn’t find anything about it on the web. In more than five years of dealing with this, no doctor has ever conveyed this information to me, including my pain specialists??

So now I am of a mind that life is WAY too short to suffer needlessly!! Yay pain patch. And I think to myself, “This must be what most people feel like.” May my doctors never restrict me!

Let me translate that from algebra…Five migraines plus one knee replacement plus two schools equals zero blogging.

Monsoon season is a huge challenge for those of us with migraine, even if my doc had done the Botox right, so I have been having almost daily migraines. These are interspersed with daily moderate to severe headaches. I was going nuts and becoming more down and more frustrated each day that I woke up with one. Then, by the mercy of God, Friday afternoon the streak broke and I have been forty-eight hours without a headache. It is sooo wonderful to feel good! (though it is kind of scary to mention it out loud!)

A friend of mine just had total knee replacement so I have been helping him out. If I say “TED hose” will I receive any sympathy??

As, I mentioned before, I started classes at two schools. By signing up for an online algebra class, I thought I was getting into an open-entry/open-exit situation. The school shock continues. My instructor called and asked me if I wanted him to drop me from the class. I asked him, “why,” and he said, “because I had not started the class yet.” When I got the misunderstanding straightened out, I had several hours of getting the school math site loaded, registered, yes paid more money to be able to access it, and figured out where the work was hidden. It was then that I found out I was already past due on two assignments. AARRGHH! I got that worked out with the teacher and spent the next few days catching up on the five assignments I then had due. Yes, I can figure out why the equation above is incorrect, but don’t ask me much beyond that. My weakness is that I like to do things as simply as possible and whoever developed the laws in algebra must have been terribly bored, but that is another story!!

Fortunately my other class has very little homework because I was starting to think I needed my head examined….again!

My patient is much better now, so I return home tomorrow, AND I get my pathetic puppy back. I sure do miss her. My friend that is puppysitting her, just purchased one of her half siblings so I hear they are adorable together. (more pathetic puppy pictures!)

It is not a tragedy. It is not a tragedy. It is not a tragedy. It is not a tragedy. It is not a tragedy. It is not a tragedy.

Okay, almost convinced.

The first two times I received Botox injections for my migraines, I had stretches close to 30 days migraine-free. This time however, I have not been doing as well. Monday I had a two day migraine that still has some leftovers. It had been 9 days since the last one. In the battle with the monster I kept saying, it has ONLY been 9 days, along with a lot of other negative self talk that all migraineurs have experienced. It was a tragedy. (I, like most, just want the next treatment to kill the beast)

When the logical thinker is able to kick in though, doctors consider a success, any treatment that reduces migraine frequency and/or severity by 50%. Well, prior to treatment I was having migraines 3-5 times a week. Therefore, doing the math… This is NOT a tragedy!! This is NOT a tragedy!!

I will just keep repeating (and repeating) this and be thankful for the good days.

In the recent past, as I have been feeling more and more like I am going crazy, I believe God has been trying to comfort me by showing me that I am not alone. He has given me the repeated message that the things I feel are very universal amongst chronic pain sufferers. It is always so encouraging and uplifting to know that I am not so strange, that maybe I am not sinking like I thought I was. I love how He cares for us In our suffering. I love that I am important enough to Him that He will lead me to the things I need to see to be able to continue on.

Today’s blog post by Paula Kamen once again shares the experience of a pain patient who has been to the edge. Paula explains how Hazel has to “disconnect” in order to function in the world. I was talking to my new counselor about that only yesterday, asking her if it was normal or even healthy. Paula writes:

Hazel Reese didn’t realize she was suicidal until the day she was filling out the intake form at her first appointment at Chicago’s Diamond Headache Clinic in 1982. That was when she read the question asking if she had ever tried to take her own life.

She then remembered that just recently, “I purposely had walked in front of a bus one day down at Washington and Wells. … But I never had the thought consciously of doing something to myself, like cut my wrists or something like that. I never had those kinds of thoughts,” recalled the 63-year old, in an interview over herbal tea and her homemade bran muffins at her North Side home, while a blizzard raged outside.

This mental disconnection makes sense because, like so many people with chronic pain who have to keep a full-time job, it was Hazel’s main way of coping. For her 24 years at the phone company, she put all of her energy every day into just getting through work “like a robot” — a comparison she makes often -– while keeping the pain a secret from most others. When she got home, she could do nothing but collapse.

I am thankful to Paula again for sharing this look into life with challenges.

I had another . I found a new and fascinating cause as to why I keep having migraines and why the Botox is not working as well as in the past, but that is another story. So after being humiliated in the bank by my unique form of migraine, I sit in my car for thirty minutes waiting for my medication to take affect so I can drive home, bypassing the hospital!

I finally get to my recliner and I am thinking just make it stop!!! I am so that it is happening again.

So I and . What can I do. Then, .

I decide to take a military approach, an all out war.

Hit it with all I’ve got. One of everything in my migraine rescue kit. Not that I would recommend this as a smart approach, I was at a desperate place. I am however, to say it worked!!

By last night I was feeling so bad that I was sure it was the flu and called several friends I had been around to warn them. Fortunately however, I woke up feeling much better this morning. That means it had to be a migraine…or a miracle healing. The good and the bad about preventive medications working is that they can change or eliminate the aura and the course of the migraine as a whole, making it not as recognizable. Less painful yes, but also harder to identify, thus harder to know how to treat symptoms.

So, on that note, my migraine search for this morning yielded a blog post by Paula Kamen, entitled Leaving the Rabbit Hole. She writes for, among other publications, New York Times new migraine blog. She also wrote All in my Head,An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache Her blog post peaked my interest because it speaks of how I, and I am sure many people with chronic pain, feel…in frustration, but are afraid to say out loud.

The worst thing, to me, about having a non-stop multi-year headache isn’t necessarily the pain. Or the way it tends to disrupt intimate relationships, empty all financial reserves, and sabotage the best-laid career plans. It’s not even the endless barrage of (albeit well-meaning) suggestions for “cures” from everyone you meet, most of which you’ve already tried anyway (except for the colon cleansing and the Jews for Jesus conversion).

No, it’s the emotional suffering – from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads.

The article has much more to it and is well worth the time to read it. Leaving the Rabbit Hole

When you try just about everything anybody suggests, you try many medications and supplements, you go through painful procedures, and eventually find your way back where you started, the frustration does lead you to start questioning yourself. It just doesn’t make sense. Doctors can do heart transplants and brain surgeries, yet they can’t effectively eliminate migraines or chronic pain. So if it doesn’t make sense…?

I am thankful that someone prominent was willing to say it out loud, in such an out loud place. Perhaps her voice will help bring attention to this devastating problem, and help us let go of the shame that accompanies it in the process.

I have been tossing around with the decision of when to repeat the Botox procedure which has been a life changing treatment for my Hemiplegic Migraine. Going from having 3-5 migraines a week, to only having one every 3-5 weeks, it was a no brainer for me…DO IT NOW!! However, my pain specialist begged me to wait so he could see if the Radio Frequency Ablation procedure would take care of them.

The nerve burning did take care of my Occiptal Neuralgia, which caused daily pain and pressure in my head that became more intense as the day went on. I am thrilled with the results and would do it again in a heartbeat, but hopefully won’t have to for 12 months.

However, as the last Botox has worn off, the migraines were starting to trigger daily, and even multiple times a day. I would rather not live like that. (as I mentioned before, that is not living) I made a call to an excellent migraine patient advocate, Teri Robert, to seek her advice. She was extremely knowledgable and helpful, and I was able to make a non-emotional decision. Yesterday at 3pm, Dr Eric Eross, did the injections. I lost count at 20 but just kept repeating, “It’s a small price to pay.” (and my friend would reply, “to get your life back.”) I must say that now that I have done it, I am at peace with my decision and am anxious for the Botox to kick in.

note: the link for Dr Eross is to his bio on The Pain Center website, though he has now opened The Scottsdale Headache Center at The Arizona Neurological Institute. That website is not operational yet, but I do highly recommend him.

In an effort to gain control of my migraine disease, I scan the internet daily for new research and information on the subject. On September 4, 2007, the American Academy of Neurology published a study in their medical journal Neurology, regarding the link between Migraine, depression, and childhood abuse. I discovered the information in an article written by Teri Robert for Health Central on MyMigraineConnection.com. As I was beginning to believe depression was becoming a bigger issue, though never wanting to admit it, it got me to thinking.

I decided after much personal debate and reflection, to mention this to my neurologist. He suggested that I talk to someone about it, that chronic pain is closely linked to depression and anxiety, and left untreated they can take on a mind of their own. That was enough to scare me into action, I certainly didn’t need a new difficult to treat problem.

I prayed about the situation because I really wanted a Christian counselor if I was going to open myself up to anyone. Through God’s guidance, I found a woman with whom I am very comfortable and my insurance covers it. Double Praise! So now, I truly am happy to say, I have a new team member as part of my total treatment program for migraine and it’s comorbid buddies.

My dear friend always tells me that though we wish we could tunnel around painful issues, we really have to walk through them to get to the other side. It is time to walk through this pain, rather than keeping it locked away, so I can heal that part of me and hopefully it will have an effect on my migraines as well.

I have never wanted to be too personal on such a public place, but it is through openness that we can help and encourage others, and in the process perhaps, inspire hope. That is my desire.

Update: Just reviewing my old posts under brokenness and came across this one, where I resolved almost two years ago, not to hide my pain. Perhaps that is why I was directed to look back tonight.

My sister was very kind in sharing her page of images with me so that I could post them on my blog also. As our personalities are different, there are emoticons there that I will probably never use. One that I thought gross, and was sure I would never use, I was going to delete until I found out that we are sharing the list. So now I have figured out a way to kill two birds with one stone. I can use the emoticon and cure migraine disease:

Update: This morning I found this blog that had an astounding description of life with migraine. Here is one quote:

Every migraineur understands exactly why decapitation would be a relief.