The Losses

I’m sad. Seems like an emotion that surfaces more and more of my life. It started late 2011. I lost a classmate. Now that may not seem like much, but there were only 21 one of us that graduated together. A few months later, I lost another. Both died from an apparent drug overdose. Don’t do drugs. They are bad. No, they’re more than bad. They absolutely destroy.

Then, in 2012, my sister was murdered by a crazy neighbor. In the two years since she died, I’ve lost my sister’s mother-in-law and one Aunt to cancer. I lost a cousin who was hit by a drunk driver. He was 18. I’ve lost an Uncle to heart disease, and one Uncle died when a car fall on him. Three sweet friends in my theater family died. My Pastor for 19 years, who was also my boss for 15 of those years, committed suicide. Today, I received the news I lost another cousin because of a drug overdose. Some circle huh?

It’s hard. But I find myself consoled in some weird way by the thought that it’s not as hard as it could be. Some people are suffering at a deeper level. I haven’t lost my spouse. I think that would be really hard. I haven’t lost a child. That has to be harder. Do we grieve at different levels? I was sad with some of the losses, but I was in total shock with others.

I guess I’m wondering if it matters at all how deep or difficult the hurt is. In the moment, it’s pain. Plain and simple. Recovery from the pain and hurt is never the same. Some losses have stayed and stayed; others came and went in just a matter of hours. What I could not have predicted was which ones lingered and which ones didn’t.

I hadn’t had much contact with my old classmates as an adult, but I was sad for a long time when they died. Today, when I received the news of my cousin, I was really sad. I didn’t know where she was living, how many kids she had, or if she was even married. I didn’t know her much at all. But it hurt. I think I’m a little scared too.

Her mother (well, grandmother really, but she was the woman who raised her), died only last year. Was she still grieving? Was it the pain of the loss that caused her death? When is it just too much? When is it too hard?

For me, I know there is joy in life if I choose to stay the course focused on the light of Jesus. I’ve no doubt His light shines brightly. But what if the fog from the storms of life never lifts, and no matter how bright the light is, the fog is too dense? What if I can’t see the light? In the end, I know the light is always there, drawing me. Even when I can’t see, I know the light will always be shining.

The Holiday Tradition

The holiday season has, for my family at least, always been a time of tradition. The gathering of family at my parents’ home, the feasting on turkey and dressing, and the opening of presents at Christmas – one on Christmas Eve and the rest on Christmas morning. No matter the status of our relationship with each other, and oh how those relationships have ebbed and flowed over the years, my parents’ home has always been a place of welcome for me. Traditions always comforting. Laughter, warmth, thankfulness, and the story of Christ’s birth ever present. It hasn’t always been easy though. 

In October of 2012, my younger sister was murdered about a mile from my parents’ home. Her daughter, 15 at the time, survived three gunshot wounds during the incident. You cannot imagine how cripplingly painful the holidays were that year. We gathered and feasted and gave thanks for each other – the living – and even shared a few gifts, but the warmth of being with family just wasn’t the same. We saw in each other the pain and heartache of what was so glaringly missing. No one wearing fuzzy slippers and Grinch pajamas. No one sneaking a piece of mom’s cherry cream pie. No one just chilling with dad. But the days went on and life continued.

A year later, in the middle of the holiday season, I am reminded of the importance of documenting life’s moments. It’s easy when the moments are joyous and beautiful. Not so easy when life takes such a sharp unexpected turn. Losing my sister is the hardest thing I’ve ever gone through. Here one day and gone the next. How can life change so fast?

The holidays are one part of that change I suspect will never be quite the same.  Grief and sadness show up when I least expect it. “Let’s watch the Charlie Brown Christmas special!” I said with giddiness. Five minutes in I had to leave the room, overcome with grief. Who knew that would be the catalyst this time? Oh, I know a few obvious things to avoid – all things Grinchy, that show about the mice and the clock caroling to Santa, and of course, fuzzy slippers. But Charlie Brown?  There’s no connection between her and Charlie Brown. Grief is very sneaky these days. It punches me in the gut and makes it hard to breathe, leaving me searching for the comfort of tradition that used to come so easily. 

And so, it is in that search that I am reminded of the one tradition that will always be most comforting – the story of Christ – not just his birth, but his birth in my life. It is his love for me that is the only tradition I need, no matter what else may change. His love is eternal.

Merry Christmas and a happier New Year.

Always,

Dana

My Unocmmon Miracle

Uncommon miracle? Really? Is there such a thing as a "common miracle"? I hope not. For me, anyway, the miracle in my life is from an unlikely source. Botox. That's right. You read it. Botox.

For years, honestly, at least 6 or 7, I suffered with chronic migraines and headaches. Imagine waking up every morning and your the first thought is "does my head hurt today?" And then multiply that one morning times 365 times 6. That's how many mornings I had that thought, until about a year ago.

On August 31, 2011, I had my first botox injections for migraines. And guess what? It triggered the mother of all migraines! I couldn't believe I had voluntarily allowed a neurologist to inject me with 100 units of botox to help with my migraines just to end up in the emergency room one week later with the worst migraine of my life. I left the hospital still in pain, but the next day, oh mommy. The next day was the best day I had had in years. Granted it took me several days to detox from the amazing IV cocktail they whipped up for me, but I felt like a new woman.

That feeling lasted about 10 weeks. Ten weeks of having maybe one headache a week. One! And the migraine meds I used to stop the pain actually worked. I had my next set of injections in December, and the results just weren't the same. No migraine from hell, but the results were a flop. I had two or three headaches every week and the migraine meds just didn't cut the pain. That old nagging question every morning started happening again. The answer to that question determined the medications I would take with my morning coffee.

This went on another four months until I had my third set of injections. We bumped it up to 150 units. Now, keep in mind, if you were having botox injected for just cosmetic reasons you would have between 25 and 30 units. I was up to 150 units being injected in my neck, shoulders, scalp, forehead and jaw. That's when the miracle began to really happen. I went several months having only one or two headaches a month. Really! This was what it was like to NOT have a life with migraines? I had forgotten what it was like. It lasted about three months and then the pain. Agh! I'd actually forgotten how bad it was to have pain every-darn-day until about three weeks ago. Oh how I'd taken for granted a pain free life.

Then, last week, on August 22, 2012, I had my fourth set of injections. This time it was 200 units. And today, voila, a morning with no pain. The goal, ultimately, is to space the injections out to only twice a year. The magic dose to make that happen seems to be between 150 and 200 units. So, we'll see what happens. When I talk to people about the treatment I get for migraines, they immediately consider it a nice side affect of the botox, thinking the real reason is the cosmetic affect. They couldn't be more wrong. The reason for the injections is to stop the pain. The cosmetic change, well, that just happens to be a very nice side affect of being pain free.

46 days after botox

Today is about halfway until my next set of injections. It's hard to believe it's been nearly 7 weeks. I've had 2 headaches since my last post, one of which was a migraine. According to my headache diary app, iheadache, I've only had 6 headaches following the 8 day headache from hell triggered by the injections themselves. That's a lot of numbers, but it boils down to an average of one headache a week lasting no more than 24 hours. Sound like a lot?

Well, consider this, in order to be approved for botox therapy you have to meet the criteria of having chronic migraines. Chronic migraines, as defined by Humana and most insurance companies I've researched, are at least 15 migraine/tension headaches a month, or more than half the time. I met that criteria - and then some. Migraines are know to last anywhere from 12 to 72 hours. Oh yeah, at least. You also have to meet some scarey criteria.

For about two years I worked as a mental health social worker, or a CSI Worker - "Consumer Support Individual" - as they are called in Georgia. It was by far the hardest job of my life, and I worked in a federal prison for 4 years. I participated in the lives of so many hurting people, many of whom were on mental health medications. I saw the side effects it had on them and on their families. For most of them, these side effects lessened in comparison to the way their lives were without the medication.

One of the requirements for insurance companies to approve botox for migraines is to be on some of these medications because they prevent migraines for some folks. Not the case for me. I've tried so many medications I can't even remember them all. The most frightening was nortiptyline, a tricyclic antidepressant. Talk about a black cloud, and flushing, and a black cloud, and a dry mouth, and a black cloud, and constipation, and well, you get the point. Oh, and the headaches didn't change. There are other meds that are recommended, medications like Depakote, which I refused to try.  Triptans are the golden egg for migraine relief, but they only work after the headache starts. My insurance covers 6 of these a month. The retail price for one of these pills is $27.50. Multiply that times 15 headaches a month, and well, you get the picture. I guess I just learned to push through it.

It's been interesting watching the responses of my friends and acquaintances as they start to realize what all that means. I get statements like, "I had no idea. I'm so sorry you were in so much pain. I never knew it was that bad." Part of me wants to jump up and down and shout "hurray for me! I seemed normal!" But part of me wants to sit in the floor and cry because I didn't trust my friends to help me carry this burden. I am continually learning about myself.

My next follow up isn't until November. I plan to share a good report - a hopeful report. I plan to schedule the next set of injections, and I plan to find out what to do to prevent the inevitable migraine that will follow. I remain hopeful.

10 days since the last migraine and still hopeful

Today is 33 days since the botox injections. I have a headache this morning. The first headache in 10 days. It woke me from a very nice sleep actually. It's probably not a migraine, just a combination of TMJD/sinus pressures. That doesn't mean it doesn't hurt; it just means it didn't start as a migraine. In fact, I sort of wish this stupid monitor wasn't quite so bright.

I've been pretty hopeful since the last post that this treatment is going to work. I've certainly put it to the test. I've stayed up late, eaten at weird times (if you didn't know, sometimes not eating at the same time everyday can be a migraine trigger. Weird huh?), drank hard liquor - one rum and coke - gone to a football game, and made lots of plans I wouldn't make normally because I knew I might have to cancel. And . . . no migraine . . . well, unless the one this morning gets worse.

A not-so-crazy thing that is happening is how aware I have become of the TJMD/sinus issues. In February of 2010 I had arthrocentesis, also known as joint aspiration, done on my left jaw due to dislocation. That's right, my jaw was dislocated. The doctor told me the joints in my jaw were degenerating. Pretty painful, but mostly frustrating. It meant my mouth didn't open very wide. Yeah, yeah, maybe that wasn't a bad thing, but it was a painful thing. So, a doctor in Georgia gave me the laughing gas and drew out some fluid, relocated my jaw, and sent me on my way. The opening doubled for while. Not anymore.

Several weeks ago, I finally found a doctor in Texas that would see me. TMJD is this huge mystery in the medical world. No one specializes in the treatment, and no one regulates it. It feels like this major crap shoot. Anyway, this doctor, an oral surgeon for a maxillofacial office, works with a dentist to try and correct the problem without surgery. Here's the deal, not only do I have limited opening of my jaw, but it doesn't move to the right anymore. Try chewing gum just up and down. Did you? It doesn't work. In order to properly chew, you have to move right and left too. The doctor asked me twice if I had had orthodontic work done. I said "no" both times. In the back of my mind I was thinking, "Dude, you already asked me that once. Don't you remember?" Turns out, the reason he asked is because they generally see this problem only in patients where orthodontics have "gone bad". Of course I would be an exception to the norm. He didn't mention degenerating joints, but thinks it may be some sort of "bone" issue. So confusing! My next step was to follow up with the dentist. I had an appointment set when I got the call that insurance had approved the botox. So, I cancelled the dentist appointment. I do believe I will probably be following up with him - soon.

The pain from the TMJD starts out with lots of tension under my ears around my jaws, ear aches, and them ultimately in the areas under my eyes. Think of wearing a surgical mask. Everything covered my the mask, hurts. Well, except for maybe my nose. Now, add sinus pain/pressure above the eyes, bloody nose, and ear aches - did I mention ear aches? You get the picture. All that tension and discomfort can ultimately escalate to migraine level pain. Then there is the clicking and popping.

I have always been able to pop my knuckles, pop my back, pop my neck, yada yada. I can also move my wrist so it makes a popping sound every time I move it. It's a different kind of "pop". For my jaw, it started out with a popping sound every time I would move it a certain way. Recently, it "pops" like when you get an adjustment at the chiropractor. Really loud. Now, it's back to popping every time I move it a certain way. I don't know if all that makes a difference, but it's two very different kinds of feelings and kinds of sounds.

I'm not certain of my next steps. I know the botox isn't my last step, just a HUGE step in the right direction. According the TMJ Association, current research on TMJD seems to indicate "less is best". I'm wondering though if I'm past that stage. A little scared about it too. I know taking slow, precautionary steps are necessary, but I just think I'm beyond the "slow and easy" progress of treatment.

Last week, my husband told me I'm a nicer person now with more energy at home. He said I'm easier to talk to and seem to be able to listen better. I love his honesty. It seems he is hopeful too.

So, about the botox

It's been 17 days since my first injections of botox for migraines. The session took about 1 1/2 hours and injections were given in my shoulders, neck, scalp, forehead, above my eyes, in between my eyes, and in my cheeks - where the muscles are that cause me to clench my teeth aggravating my TMJD. I was very nervous. My blood pressure was pretty high at the doctor’s office. “Would it hurt? Would it bruise? What if I had a reaction?” were all questions going through my mind. But the big question, the really, really, big question was “What if it doesn’t work?” This isn’t cheap, even with insurance paying. This is the last thing. There’s nothing else after this. I was afraid to be hopeful.

Botox is only sold in 100 unit vials

100 units of botox were injected. It didn’t hurt at all on my shoulders and neck and scalp. Injections above my eyes and in between my eyes were pretty painful. The botox stung. The doctor changed needles several times, and each time she changed the needle, the injections were less painful. Who knew a needle could dull so quickly? The injections bled, but I didn’t know that until afterwards when my husband told me about it. In my mind, as I was preparing myself for the injections, I had equated the needle pain to that of acupuncture. It was more painful, but only slightly. Some of the pain, I’m sure, came from the fear of the unknown. There was some minor bruising on one injection spot on the back of my neck and on my forehead.

My neurologist told me in the best case scenario I would start to see a decrease in intensity and longevity within 2 to 4 weeks. Worst case scenario would be no change at all.

I went back to work after the treatment, and about 2 hours later I had an aura – first one ever – that caused me to see dark spots, have fuzzy vision, and see a pulsing starburst pattern on the left side of my vision. I was concerned and frightened I was having a reaction to the botox. The aura lasted about 30 minutes, and then the pain started.

I had anticipated the treatment would trigger a migraine. Often times stimulation to my scalp will trigger one. Love to get my hair washed at the salon; hate that it might trigger a migraine. What I didn’t anticipate was the severity and longevity of the pain. 7 days later, on a Wednesday afternoon, I ended up in the ER because of the pain. Another first for me. During the past 7 days I had taken 6 Maxalt (a triptan that usually relieves the pain for at least 10 hours or so), ibuprofen, muscle relaxers, demoral, Phenergan, and allergy meds, but none of those things brought the pain level below a 3 on a pain scale of 1 to 10. After a very special IV cocktail of IV fluids, Phenergan, Toradol, Stadol, morphine, and steroids, I still did not leave the hospital pain free. I was seeing lots of pretty colors and pretty much didn’t care that I was hurting, but still hurting nonetheless. But the next day . . .

The next day, day 8, was amazing! I don’t remember the last time I felt that good. Duh! After all those drugs, of course I felt good. I was spiking a fever from a cross-reaction to the Toradol, but dang; I worked 10 hours that day and could have worked longer. The next few mornings were pretty rough detoxing from all the drugs. I was pretty shaky and dizzy until about 3:00 in the afternoons. It was 5 days after my trip to the ER before mornings started feeling normal. But I had no headache.

12 days after the injections someone at work asked me if I was wearing my make-up differently. I smiled and said “no, but here’s what you’re probably noticing.” I told her what she was probably seeing was the side effect of the botox – fewer frown lines between my eyes. When I’m in pain, I frown. My mom can always see it. She knows immediately when I’m hurting because she can see it between my eyes. The botox keeps those muscles from reacting to the pain, so I’m not frowning all the time. I think that’s the difference folks are seeing.

13 days after the injections, I was home chillin’ in the living room, when I started hearing my pulse in my ear. This usually happens after the migraine pain has escalated to a pretty intense level. But I had no pain, just the pulsing. I called my husband because I knew this was a sign the botox was working. After botox, migraine sufferers may experience the normal “first signs” that a migraine is happening, but never have the migraine pain. I was very skeptical of these reports, but then it happened. Pulsing in my ear, and no migraine pain. Wow!

14 days after the injections, I started with some mild tension pain that escalated to a migraine. Because I had taken all my triptans during the first 7 days after the injections, I had nothing but ibuprofen to take. Needless to say, I was unable to attend a church event that night. But the next day, I had no pain. A one day migraine? What’s that? That hadn’t happened to me in years, maybe even ever. I was starting to accept that this treatment might be working.

Today is 17 days after the treatment. I went out to dinner with friends last night – on a Friday night – after work. Planning to take my daughter to a concert tonight. I’ve had 1 migraine headache in the last 10 days and it lasted less than 24 hours. I’m still taking ibuprofen daily for the arthritis I have and the TMJD. I take a muscle relaxer occasionally for the TMJD as well. Taking allergy meds because well, I have to! Darn those allergens! But right now, today, I am hopeful this therapy may be an answer to prayer.