Clap, Slap, and Run

Bah! Migraines, migraines, migraines!

2011-08-18T17:46:00.000-05:00

I've been feeling like holy hell for the last few months. I've had a migraine almost every day for too long. I've only had 2 days this month where I didn't have a migraine. There were a few days where I didn't have a migraine most of the day though. It's not all doom and gloom. I've also been able to get some relief from my abortive med (DHE) at lower doses. Unfortunately, I have been unable to function as if I even try to do the dishes for 10 min, the migraine often breaks back through.

It feels like there is a curtain or divider in my head. Many actions such as doing the dishes or cleaning cause the migraine break through. At healthier times, it's been behind a wall. In the last year, I've gone through a week without any migraines. Then it's as if the migraines have moved out.

I'm worn out and tired. Duh, right? lol. I havent' been able to find a local doc to do iv therapy with me. So, my migraine doc put me on a medicine that's related to DHE. I take it three times a day. It's supposed to get rid of and prevent the migraines. I started taking it yesterday, and I feel like unadulterated holy hell. It usually takes me a week or so to adjust to meds. I try to wait out the adjustment when I experience side effects. I've got a crazy headache not like my normal headaches. It's a stabbing pain through the middle of my head perpendicular to my body. I feel fatigued and just generally cruddy. I know it'll be ok. But in the mean time, I feel quite awful. Unfortunately the doc will increase the dose in a few weeks if I respond to it well. Thus, I realize I may need to go through other adjustment periods when the dose changes.

I really hope this works. Please, please, please, let it work.

Would like some cheese with that whine?

2011-08-03T09:44:00.002-05:00

Yes, I've been a whiney butt. Sulking around the house like the defeated sissy pants I am. I have been beaten by the migraines--at least temporarily. I couldn't sleep last night because my nervous system was in overdrive. HYPER! And preoccupied with the oddest things. Last night I was obsessed with the deck. Yes, the deck. I tried to read--and read I did for about 4 hours, but every few pages, I'd find myself thinking, "We really need to finish the deck. It will rot out. It will cost a bloody fortune to get fixed. Why can't hubby and I every get things done?" Huh? Who cares???? It's a deck! So it rots and falls apart. Not worth obsessing over. But this is what my mind does sometimes when I'm sick. Well, I'm over it. Over it!

As you might have guessed, I also have a migraine this morning. And surprise, I'm hyper! If only I could harness this energy for something other than having migraines. I surely would be able to refinish the deck, caulk the tub, get the car fixed, and seal the basement. But alas, on days I don't have a migraine, I'm more calm, and if I start to get too excited---whether it be about the tub or me and the hubby acting like idiots, guess what? Yes! You're finally getting it--I get a migraine!

If only I could be like Pimmy, and harness my energy to defeat rolls of paper towels or toys on strings. We all have dreams I guess.

Tally of migraines and med bills

2011-08-01T17:05:00.005-05:00

It's time again to compile the total number of migraines I've had and the cost of my medical bills so far this year!

Number of days I've had migraines so far this year: 122

Number of days I've had migraines in the last 12 months: 162

Out of pocket medical expenses from January 2011 through July 2011:

$1,632 Health insurance premiums

$2,250 Medication co-pays

706 Doctor visits

56 Dentist

$4,644 Total

In a previous post, my medical bill total this year, I explained the tally in further detail

Stupid doc and lots of migraines

2011-08-01T17:05:00.000-05:00

Sorry I have been MIA. July was unpleasant. I had 24 days with migraines. I also had a doctor's appointment with the specialist I see for the neurogenic orthostatic hypotension (NOH). In a nutshell, NOH is a partial failure of the autonomic nervous system. My body fails to regulate my blood pressure and pulse correctly. My blood pressure drops in response to various activities such as standing in line, standing up, bending over, heat, eating a big meal, not being hydrated, being ill, et cetera. The symptoms I experience include light-headedness, tunnel vision, losing my vision, losing my balance (and fainting rarely), ears pop, confusion, nausea, fatigue, and headache. I'm sure there are more but you get the idea.

I have been seeing this doc for about 5 years, and I went to see him for my annual checkup last week. Because I had a migraine the morning I went to see him, I had taken DHE. One of the side effects of DHE is that it increases a person's blood pressure. In doing so it masks the NOH. He insisted that the DHE could not do that. Evidently he hasn't looked at the side effects list lately. He decided I no longer have NOH even though he'd confirmed the diagnosis for NOH the last 5 years and I still have symptoms. I've had NOH for 27 years--many of those years without migraines. My doc decided I haave migraine-associated vertigo. So basically he thinks my symptoms of light-headedness, dizziness, and drops in my blood pressure when I change postures are all symptoms of migraines. I have gone years between migraines in the past and still had the NOH, but he was not interested in discussing that. I also have gone through autonomic nervous system testing which showed I have NOH. So he scheduled me for more testing.

Keep in mind, I do not see him for migraines. He advised me to begin taking DHE (the med I take when I get migraines) 3x a day even when I don't have migraines. That would cost $260 a week. He sent a copy of his new diagnosis and his med idea to my migraine specialist. The nurse from the migraine specialist's office called and advised me not to follow his recommendations and my migraine doc will be having a phone consultation with me later in the week.

All this to say, I am worn out and frustrated. I know the migraines are getting better in some ways. I only had 1 severe migraine last month instead of the 2 I normally get. In addition, DHE has more effective at ridding me of migraine symptoms. In addition, I have been able to take lower doses of DHE to do so. At the same time, it takes very little for me to get a migraine. A few loud noises or bright light and whammo I have a migraine. I'm trying to stay positive.

Scared about talks of cuts to Social Security, Medicare, and Medicaid

2011-07-14T23:35:00.000-05:00

I was so lucky to get Social Security Disability only a few months after I applied. It never occurred to me that I might lose it, though I remember when Reagan cut disability in 1981 leaving people without any income whatsoever. I'd forgotten about it. Now the talks about budget cuts have me scared.

I only get $970 a month, but it really helps. I am supposed to be eligible for Medicare in March 2012. It would be so dreamy to have more of medical bills covered. I have not been able to go to the doctor as much as I've needed to this year, so thus far my out of pocket medical bills so far this year are a little over $4,000. I haven't seen my primary care physician for over a year. I've run out of meds for my dysautonomia because I have not seen the specialist since 11/09. I was due for a bunch of dental work earlier this year and cancelled that. Unfortunately I have a hard time getting motivated to go to the doctor or dentist when I have almost daily migraines. I keep putting off appointments.

I am expected to live on the equivalent of $5.16 an hour. And people want to cut that? I have had over 100 days so far this year when I've had a migraine. I left the house today for 2 hours and got a migraine as a result. This is normal for me. How can people expect me to work? It's already very hard to pay the bills. When the government talks about cutting benefits, people like me, and people much worse off, are the people it will affect. Please speak to your representatives about how you feel about this.

Visit Write Your Representative to find out how to contact your representatives.

Congratulations to South Sudan, a new nation!

2011-07-09T11:14:00.000-05:00

The people of southern Sudan have suffered genocide. They continue to suffer atrocities at the hands of the government and the people of North Sudan, but there is now hope that the citizens of South Sudan may be able to live in peace. Today the people of South Sudan celebrate the birth of their new nation! This is an exciting time for the citizens. A president has been sworn in, they have a national anthem, and on Wednesday the United Nations will discuss whether South Sudan will be part of the United Nations. Their is hope that the people of South Sudan can live in greater peace.

Unfortunately there continues to be difficulties. Most South Sudanese do not have access to clean water, are illiterate, and do not have medical care. In addition, a border has not been agreed on with North Sudan. North Sudanese continue to attack South Sudanese over this dispute. Please let the women of South Sudan that you support them in this historic time.

Transparent Thursday

2011-07-07T16:38:00.000-05:00

1. I've always wanted an afro.

2. And I'd love to sport a beehive.

3. I dislike fireworks. For some reason, they scare the bejesus out of me.

4. I am just giddy that a new season of Big Brother starts tonight.

5. I am also giddy that a new season of Celebrity Rehab has started. Did I mention that Lindsey Lohan's dad is on it? And Amy Fisher!

98 migraines and a boatload of medical bills

2011-07-02T09:08:00.017-05:00

It's time again to compile the total number of migraines I've had and the cost of my medical bills so far this year!

Number of days I've had migraines 1/1/11-5/31/11: 98

Number of days I've had migraines from 6/10-5/11: 154

Out of pocket medical expenses from 1/1/11-6/30/11
$1,427 Health insurance premiums

$1,882 Medication co-pays

656 Doctor visits

56 Dentist

$4,021 Total

In a previous post, my medical bill total this year, I explained the tally in further detail

Another genocide in Sudan? Why don't people care?

2011-06-30T12:03:00.002-05:00

In "Yet Again in Sudan" Nicholas D. Kristoff opens his column with the following: "The world capital for crimes against humanity this month probably isn’t in Libya or Syria. Instead, it’s arguably the Nuba Mountains of Sudan, where we’re getting accounts of what appears to be a particularly vicious campaign of ethnic cleansing, murder and rape." He reports that the Sudanese governement has threatened to shoot down UN helicopters. The forces are committing "door-to-door" executions of civilians (including children), committing mass rapes, burning of homes and church buildings, and bombing of markets, mosques, and wells.

Kirstoff states that Samuel Totten, a genocide scholar, warns that a genocide may be beginning again in Sudan.

Yet, when I open CNN online, NBC news, ABC news, CBS news, and BBC, there is no mention of Sudan. Libya, Gaza, and Greece seem to warrant top billing for many of the sites. It continues to confound and anger me that news coverage is largely absent for human rights violations of such a magnitude as has been occurring in Democratic Republic of Congo (DRC) and Sudan. Of course I'm sure there are other human rights violations of similar magnitude in other countries in Africa, such as Somalia, that are also being committed. I was just visiting Medecins Sans Frontieres (Doctors Without Borders), and I learned that Somalis refugees, fleeing conflict in their country, have been traveling to Dadaab, Kenya. Dadaab has the world's largest refugee camp, and it is now full. The camp was designed to hold 90,000 people. It holds about 350,000 people. As one might imagine, access to medical care and food is limited due to the number of people.

I wonder why I have to deliberately look for news on Africa. Why do major news organizations in USA not cover these topics? They certainly cover other human rights atrocities such as those in Libya. Please educate yourself.

As quoted on Operation Open Silence's site, Elie Wiesel once said, ". . . to remain silent and indifferent is the greatest sin of all."

Do you want to help or get involved? It's as easy as signing a petition, or contacting the White House through Twitter, Facebook, or email. Visit Operation Open Silence or Enough Project . They even compose all the messages for you. It literally takes 2 min to take action.

Weird Wednesday: The silent crippler

2011-06-29T12:45:00.001-05:00

I had scoliosis as a kid. Yeah I was one of those kids with curvy backs that couldn't stand up straight. I was also pigeon toed, but I'll save the glory of that health issue for another post.

At about age 12, the doc made me start wearing a back brace. I say "made" because I was not at all interested in increasing my already pervasive awkwardness. I'm not sure what your middle school experience was like, but mine was reminiscent of the Lord of the Flies. Evidently the brace was supposed to straighten my back. It was this big plastic thing with huge velcro straps that kept it on. It went from under my arms to my butt. I already had a pancake butt so there was no loss there. There was an oval cut out of the front for my boobs. I think I would have been fine without the oval--I did not want my developing body revealed. I had to wear an undershirt with it or the brace would chafe my skin. I won't even go into the way I got fitted for a new brace every several months because that is something I wish I had blocked from my memory. The brace created multiple levels of awkward.

I was already a geeky kid with weird glasses so the back brace did little to increase my confidence. Here's a pic of me from that period of time.

Bless my heart. You can see why I was picked on. Luckily my brace/armor protected me from getting beat up.

I wore the stupid plastic shell for 23 hours a day for a year or so. I had been sleeping, swimming, living in this stupid turtle shell for far too long, in my opinion. To top it all off, the brace failed to prevent my curve from getting worse. My doctor recommended I have surgery to straighten my spine. He said if I didn't, I would end up in a wheelchair. In addition, he warned I'd probably die young because the curve would stretch out some organs and squash others. Around this same time, I had to do a presentation in school. I decided to do mine on scoliosis. As I learned from my doc--the scoliosis could cripple me so I called my presentation "Scoliosis: The Silent Crippler." I continued to use this same presentation for many years in school. I'd mold it for the latest assignment, but I stuck with my dramatic title.

Prior to the surgery, the doc and nurses explained all the dangers. This was in the early 1980's when surgery was a big deal. The medical folks stated that the surgery was as dangerous as open heart surgery. It would take about 4 hours and I would have a long recovery. I remember them telling me that there was a risk of paralysis. But then again, the doc said I would probably end up in a wheelchair if I didn't have the surgery, so I was willing to take my chances. All I really heard was "NO MORE BRACE." If I had been a dieng kid in the Make a Wish foundation, I'm pretty sure not wearing a brace would have been my wish. At that time, people had to wear body casts for about 6 months afterwards while they healed. I wondered if they would cut a whole out for my boobs. Of course, I didn't ask. The whole thing was so awkward.

My parents worried about me having the surgery. My Mom has scoliosis as well. The doc tried to convince her to have the surgery but she didn't want to. I remember the doc taking these awkward photos of me and mom bent forward to show our scoliosis. The doc said he would use our case for some paper about genetics and scoliosis. The doc also told me he wanted me to be the first at the hospital to wear a brace rather than a cast afterward. I felt like a celebrity of sorts--suddenly my curve made me cool. I liked the doc trying out new stuff on me. The doc even taped my surgery. I fancied I would be the kid who beat the silent crippler.

In the surgery, I had 2 Harrington Rods implanted along with some clamps, screws, and wires. The doctor took some bone from my hip to put along my spine to fuse my entire upper spine from my shoulders down to the first vertabrae of my lower spine. My back kind of looks like this:

I had to wear a brace for about 6 months after the surgery so the bone from my hip would fuse with my spine. I couldn't stand up without the brace, or I'd have crumbled and possibly croaked. When it fused, my upper back became one solid bone. I've considered donating my body to science so maybe I could be on display somewhere with my nifty skeleton.

Luckily, I came through the surgery with flying colors except for some infections. Compared to past patients, I spent the least amount of time in the hospital. In your face, silent crippler!

Back on the low carb wagon

2011-06-27T10:51:00.003-05:00

Last summer I participated in intensive outpatient treatment at the Headache Care Center. For 10 days, each day, I met with the doctor, received IV therapy, physical therapy, individual counseling including biofeedback training, and some group counseling. The doctor recommended I switch to a low carbohydrate diet. He stated that a very low carb diet (aka a ketogenic diet) has been used for years with individuals with epilepsy whose seizures are not controlled by medication. He stated that similar to a person with seizures, a migraineur has a sensitive nervous system that reacts more powerfully and stays activated for a longer period of time than a person with a normal nervous system. He stated that a low carb diet may help calm the nervous system down. He also recommended this diet because I had signs of insulin resistance (I had high triglycerides and inflammation). These and some other factors also put me at risk for diabetes and heart disease.

At the time, I begrudgingly followed the low carb diet. I ate an average of 20-40 g of net carbs for about 6 months. I had more energy and felt great. My triglycerides dropped 70 points. I fell off the wagon during my birthday (in November) and the holiday season. I didn't get back on the diet until now. Having almost daily migraines, having to drop out of school again, applying for disability, and coming to terms with the fact that I may never be able to work again, I turned to food for comfort. Potatoes, ice cream, fruits, bread, et cetera all helped me feel better emotionally.

On Monday I got back on the low carb diet. I'm craving bread, chocolate, and fruit like nobody's business. One common misconception of Atkins/low carb diets is that they're high protein and filled with fatty meats. It couldn't be farther from the truth. The Atkins literature states that 12-15 of net carbs should be from a list of specific low carb vegetables. This works out to be about 5 cups of salad greens or other veggies a day.

So far, I feel okay but I'm still craving carbs something awful. Ben and Jerry's calls my name. Trying to stick with it!!

Ewww. Some of the weirder ways people have found my blog

2011-06-23T08:44:00.006-05:00

Blogger gathers info about how people find blogs. It tracks what terms people have used in search engines and then were referred to a blog. For example, one way a person found my blog was typing "footie pajamas sock monkey"into a search engine. In other words, my blog showed up in the results for that search. I love sock monkeys and footie pjs so this made me smile.

People have also searched for some weird and disturbing stuff and found my blog. Here is one of the creepier ones. "She likes being beat." Eek and eww. I had written a post about our kitty Pandora who likes being pet hard -- kind of like I'm dribbling a basketball. Me and my hubby call it "a beating" to be silly. I imagine the sicko who searched for "she likes being beat" was disappointed when he saw a silly post about our 17 year old cat. Here's a picture on Pandora on her heating pad and piles of blankets. It really is sad how we treat her so poorly:

Seems my post about how I'd like the song "I Like Big Butts" be played at my funeral has resulted in a number of visitors. I imagine they were quite disappointed when they found my blog. For example someone was directed to this post when s/he searched for 'big butt clap." I have no idea what that means, and I don't think I want to. Other butt related searches that have led people to my site include "donkey butt girls," "dads like big booties," and "I like big butt toons." I'm glad people with butts have fans. Unfortunately I suffer from butt envy because I have no butt (aka pancake butt) as discussed also in the post about my funeral.

If you blog, what are some of the weirder searches that have led people to your blog?

Happy Father's Day to my Dad!!!

2011-06-19T13:35:00.001-05:00

It's hard to know where to start in describing my Dad. As I was growing up, my Dad worked 5-6 days a week for about 12 hours a day. You'd think I hardly ever saw him, but I have so many great memories of things my Dad did with me growing up..

One of the many things I've inherited from my Dad is a love of telling stories. It doesn't matter if it happened last week or 50 years ago, we both love to tell tales. Usually the same ones over and over. I also inherited his love of duct tape. Several years ago, me and my hubby lived in a house where we'd get wasps in the bathroom. We tried all sorts of things to get rid of them. I finally got my red duct tape out and taped all around the window and some spots that went up to the attic. No more wasps! I proudly share such tales with my Dad.

Another trait I inherited from my Dad is to keep everything cause you never know when you might need it. My Dad would come home from work and carry things to our giant shed. He kept boat motors even though we never had a boat. He had all sorts of things out there--van benches, mowers that didn't work, et cetera. Also like my Dad, I use things until they are unusable. I regularly sleep in shirts from the early 90's. Our tv is almost old enough to vote though the color is a little pale and it sometimes won't turn off. I'm currently wearing mismatched slipper socks. I have few matching pairs, but I wear them anyways.

When I moved halfway across the country in my mid 20's, my Dad sent me off with some of his tools and a huge Reader's Digest home repair book from the early 1970's. I still use it! As luck would have it, my hubby and I bought a house built in the 1950's so the book is up to date for our needs.

My Dad rarely shows anger. He's very easy going--an oddity in our family. The rest of us tend to be boisterous and loud. When it was time for me to learn to drive, he took me on marathon lessons over the weekend for hours and hours. Early on, a mosquito landed on the windshield. I sprayed it with wiper fluid and turned the wipers on. I focused on the mosquito instead of the road. I lost control and the car spun around and we ended up in a ditch. Or at least that's how I remember it. It was quite possibly not that dramatic--I might have just drifted off the road. Anywho, I was quite scared and upset--believing we had almost died. I expected my Dad to drive us home, but he quietly informed me to get back on the road and continue on. By they way, to this day if my hubby says "hey look" I look over and inadvertently steer in that direction. We've drifted to the shoulder on several occasions.

Some of my favorite memories include when he taught me to swim when we moved to Florida when I was about 8. He also took me fishing when I was young. He would get so excited when I caught tiny fish. I don't think I ever caught one of edible size. I inevitably thought I caught something huge and couldn't pull it in. I'd give my Dad my pole and he'd try to pull it in and would break the fishing line. He'd quietly inform me, I'd "caught" a log or some other huge thing in the lake. I have many fond memories of my Dad resting his hand on my head as we walked around places like Disney World. I thought of it as me wearing his hand as a hat. My Dad also tickled my feet as a child. I have no idea how it started, but I loved it!

Him and my Mom attended all of the performances when I was in band. And believe me, there were a lot of performances. Even after working such long days, he'd come to the football games on Friday and take tons of pics of me marching. One year, my Mom and I got him a red satin jacket that said "Band Daddy" on it. He wore it often even though we lived in Florida and only rarely had weather needing a jacket.

Finally, I find my Dad's devotion, love, and loyalty to my Mom inspiring. I did not realize how rare it was until I was an adult. I am so thankful to have him as my father.

Depression: running from the black dog

2011-06-17T11:22:00.000-05:00

I first heard "black dog" as a reference to depression several years ago from an online friend from Australia. He used to say he was being "chased by the black dog" when he fell into depression. I find it to be a good description of how I experience depression. I feel like I'm trying to stay ahead of depression--trying to figure out when and how it will strike next and trying to prevent that from happening. I barely feel like I'm keeping ahead of it. If I'm caught, it feels like I've been attacked and have fallen. It takes great effort and meds to get back up and am able to get ahead of it.

A doctor first diagnosed with me with depression in 1996. I made an appointment with a psychiatrist when a friend strongly encouraged me to. I had expressed to her that I wanted to commit suicide, and she insisted I needed to see a doctor. I didn't think feeling suicidal was abnormal and was surprised to find out that some people don't ever feel suicidal. I assumed it was something everyone dealt with. Not that I was constantly making plans how to off myself, but I admit, it was a place my mind went to repeatedly at least once or twice a year. The psychiatrist prescribed me an antidepressant and I began attending therapy shortly thereafter. I quickly learned that I had been suffering from depression on and off for much of my life. Most of that time, it was a low level of depression, but at least once a year, I'd experience a deeper depression.

When I say depression, I am not referring to feeling down. Instead I refer to the Diagnostic and Statistical Manual IV (DSM) diagnosis of Major Depressive Disorder. Briefly, the DSM is a classification of mental disorders used by mental health professionals in the USA. When I was first diagnosed with depression, I had a hard time distinguishing from MDD and being sad. Over time, I learned more about MDD and myself.

I now can more accurately assess when I've falling into MDD rather than a period of sadness, feeling bad about myself, etc. At such times I find I have most of the symptoms listed in the DSM IV. I know I've fallen into MDD when I feel an inability to pull myself out of the negative thinking, low self-esteem, loss of interest in activities, almost daily uncontrollable crying, feelings of despair, feeling unmotivated, and feeling like my mind has slowed down. I no longer have issues with wanting to commit suicide. I sometimes feel passively suicidal, but I only feel this way a few times a year for brief periods of time. For example, I would not mind being hit by a bus but I wouldn't do anything to make it happen. Normally practicing self-care prevents me from falling into depression. My self-care includes bubble baths, reframing my negative beliefs, meditating, reading, spending time with my husband and my cats, exercising, watching tv, etc. If I am unable to stay ahead of the depression for a few weeks, I call my psychiatrist to have my medication tweaked.

I am currently fighting to stay ahead of the depression. Since I've been getting frequent migraine attacks, it has been much more difficult to keep ahead of the depression. I've had a migraine for 15 days this month. That isn't to say that I've had a migraine 24 hours a day for 15 days. Many days I feel I'm at about a 5-7 out of 10 where 10 is feeling great and functioning normally. On those days, I sometimes have a migraine in the evening or the morning. Even so, I feel worn out and tired of trying to stay okay. My thinking and memory are boggled. I have a difficult time reading because I get mixed up and cannot remember what I read. I know the migraine attacks are diminishing in severity, so I keep reminding myself this. I know if I can just get through each day, I will continue to improve and will eventually be back to less than a dozen migraines a month.

Highway to Hell

2011-06-15T19:12:00.000-05:00

I have an appointment to see the migraine specialist tomorrow. Inevitably, the night before I go, the song "Highway to Hell" pops in my head. It really seems like the perfect anthem for these trips.

Don't get the wrong idea, I love Doc. He reminds me of Richard Dreyfus in "What About Bob?"--in a good way.

I hope to God I do not remind him of Bob. I can't imagine Doc strapping explosives to my body. Doc speaks all calm like. Whenever I see him, I leave feeling convinced I've accomplished the greatest feat. He's so encouraging. When he gives me thirty or so Botox injections on my head, all the while pushing my pressure points and putting me in intense pain, he says softly, "You're doing great, Krista. You're doing great." I think "Woot! I'm doing great!" And I think, "I'm going to get better! My migraines attacks will diminish-- thanks to my wonderful great doctor." But it's still a Highway to Hell.

The pain is one of the reasons I call this journey a Highway to Hell. Another is it's a 4 hour drive EACH way. Usually it is 7 levels of increasing unpleasantness. I usually get a migraine on the way since it's sunny out. I normally take shots of DHE for the migraine attacks, but I hate giving myself a shot in a gas station bathroom. It just feels wrong. Like I'm in a seedy movie or something without all the excitement. So I wouldn't have to shoot up in the bathroom like a heroin addict without all the fun, one of the docs gave me the inhaled version of the med I take. It's a nasal spray called Migranal. After opening the package and assembling all the parts, you put a shot in each nostril and hold your nose closed. For FIFTEEN minutes. Mmhmm. No inhaling through the nose. No tilting your head back. Oh and after 15 minutes, you shoot another dose and again hold your nose closed for another fifteen more minutes. I used to keep band-aids with me so I could use them to keep my nose closed. Although I clearly hated taking the Migranal, I am quite slow. It took me about 3 trips before I realized a shot would be much easier. So now, I just do the shot. At least it's over fast.

It's not all bad. One of the perks about getting a migraine while driving though is that it usually doesn't come with the same symptoms my normal migraines do. If I get a migraine when I wake up (the majority of my migraine attacks), I get pain, nausea, and a ton of other not so fun symptoms. I get confused, clumsy, weak, and dizzy. I'm sure there are others but I'm a freakin' wreck!! For some reason, when I get the migraines later in the day after being in the sun, activity, or stress, I get pain, but that's it. I usually get sleepy when I drive, but if I have a migraine, I don't get tired at all!

I am so thankful my hubby is off work for the summer (he teaches) because I won't have to drive tomorrow. But I'm scared of how sick I might get. I know, the worry only makes it worse! But I'm hyper as hell and ready to run around the block in fear. (Note: this is highly unusual as I have not actually ran (run?) in several years.) My first instinct when I get anxious is to eat! EAT! I deferred my eating urge and made myself do some relaxation. I felt better after relaxation but I still wanted food! So I made a salad--hoping this would satisfy my urge to stuff myself silly. But noooo, even though I ate a bunch of salad and drank about 32 ounces of water until I felt like I was going to explode, the Doritos would not leave my mind. I tried reading. Nope, no good. Pat the cats. Nope. Took a shower. Nothing helped! So I did it, I ate a bunch of Spicy Nacho Doritos. Now I feel awful. But at least I'm not as worried about the doc appointment! The discomfort of my stomach is distracting me from freaking out. Yes, I know this is exceedingly unhealthy, but I'm really trying to keep myself from going unhinged.

So, you might still be wondering why I think of it as a Highway to Hell and why I'm a wreck. Or maybe you don't. I'm not exactly logical at the moment. Honestly, I'm scared to death I'm never going to get better. I realize that me not keeping up with all the relaxation, good diet, exercise, etc has helped my migraines come back full force. It also doesn't help that it was a year ago in June when I got intensive outpatient treatment at the Doc's. Although I was scared to hope I'd get better, I did slowly. And now, I'm back to where I started--only worse. Last year I was having 16 days a month with migraines. I've had 13 so far this month. Bah! I know, blaming myself doesn't help, but it's hard not to. I'm getting back on track. I've started doing some moderate exercise and I'm doing meditation and relaxation more regularly. Hopefully Doc will have some new ideas for me to try along with the Botox injections. Hope I remembered to put Highway to Hell on on my ipod.

Grateful Sunday!

2011-06-12T09:30:00.000-05:00

1. Dictionary.com. I just had to look up "grateful." I kept thinking it was spelled "greatful."

2. Semi-perma-brain fog from having migraines almost everyday. Sometimes it makes me laugh. (For example, #1)

3. Emerald's Cocoa Roasted Almonds. Yum

4. Free samples that fill up my mail box.

5. Pandora leaving cat toys for us outside our bedroom door.

6. Cinnamon roll scented from Bath and Body Works.

7. Body pillows

8. Slap fight with my hubby in JoAnn Fabrics

9. Not being kicked out of JoAnn Fabrics when we have a slap fight.

Migraine journal

2011-06-10T11:29:00.002-05:00

I have to admit I get lazy about doing a journal about my migraine attacks. For several months, I've tracked the following info:

What days I have experienced a regular migraine attack which I define as:

The migraine occurs shortly after I wake up
My standard meds (DHE shot + Zofran) are effective.
My pain only rarely goes over 8 on a 1-10 scale with 10 being unbearable constant *!&? pain.

Days I have a migraine attack that do not occur in the morning.

These are exactly like #1 except they occur after I have exercised, been stressed, left the house, etc.

Days I have had a "monster migraine."

These are the attacks that have no responded to my standard abortive meds (DHE shot and Zofran) so I took Stadol and Phenergan in addition to my standard meds.
Pain is 9-10 most if not all of the day.
These days I take lots of baths since that is one of the only things that will relax me.
I also spend a large amount of time: laying very still in the dark with ear plugs, focusing on my breath, and reciting either Equanimity or Metta phrases.

I'm trying to get back in the habit of keeping a more detailed journal to include all of the following for each attack:

What time the attack began
Specific symptoms
How many doses of meds I took
Triggers
Level of pain
How effective the meds were.

Luckily this morning I was browsing around Migraine.com, and they have an online Journal that keeps track of all of the above! Woot! It's so much easier to just choose info from their lists of symptoms, triggers, etc online than track it on paper. On paper, I run out of room, forget to track some things, and have a hard time keeping up with the sheets. I'm hoping this online journal is something I can stick with. It'd be a lot more helpful when I get ready to go to the doc and compile a synopsis of how I've been for the last 3 months.

If you have a chronic illness, how do you keep track of symptoms and attacks? Or is there something else you use to track your illness over time?

Transparent Thursday

2011-06-09T10:22:00.000-05:00

1. Hmm I'm not sure if "transparent" is spelled/spelt right. I'm having spelling issues.

2. I find it odd that it's illegal to discriminate against a person for employment in the US, but we might regularly discriminate against politicians for their gender, race, religion, sexual orientation, and age. The other day I was watching something about one of the potential presidential candidates who is Mormon, and it struck me as odd that this was an issue. The more I thought about it, the more I realized I've focused on these issues in making a decision about who I am going to vote for. Doesn't seem right.

3. When I have migraines, I obsess about cleaning and bills and other things I can't do when I have a migraine.

4. If I ever got a lot of money, I would take horse back riding lessons again. Love horses even though I fall off a lot.

5. Since I do not feel well much of the time, I go days without ever changing into normal clothes. Fortunately, I have several pairs of pajamas. It also comes in handy when I miss my mouth and get food or coffee on my clothes. Not as big a deal to spill stuff on my pj's. My sillies pj's are these sock monkey footy pj's I got at Target. I was so excited when I saw Mercedes on Glee had them!

Weird Wednesday

2011-06-08T11:32:00.003-05:00

Yes, that is a sock monkey on the top of the Christmas tree. One of the weirdest things about me and my hubby is that we collect sock monkeys. It just kind of happened; it wasn't something we planned to do. When we first started dating, I told him about this sock monkey I had as a kid. He got me one for my birthday as a joke and it spiraled from there. One of the first years we celebrated Christmas together, we couldn't find the star to put on the tree. I had some Santa clothing I would put on the cats for Christmas pics. We decided to put them on Sammy (our fist sock monkey) and put him on the tree. It became a tradition! About 5 years ago we got him a full Santa suit from Build A Bear. What's one of the weirdest things about you?

Looking for more fun weirdness visit my favorite weird blogger: It's Ok To Be Weird

Grateful Sunday!

2011-06-05T13:44:00.000-05:00

I try to remind myself to do regular check-ins with myself about what I'm grateful for, but I often forget. Maybe if I get into the habit of doing it on my blog, I'll remember!

1. When my hubby is concentrating really hard, sometimes he waggles his tongue horizontally. (Please don't tell him I told you.)
2. Often, when Pandora, our kitty, is fixing to go to the bathroom, she quacks at us to let us know.
3. Puppy pads. (Pandora likes to go to the bathroom with all of her except her bottom in the litter box. Puppy pads make it so much easier to clean.)

(Pandy's embarrassed I told you about her bathroom habits.)

4. Pimmy, our other kitty, playing with the curtains.
5. Not having to separate our recyclables according to material.
6. Unconditional Chocolate Dove ice cream.
7. Slipper socks that keep me from killing myself on our slippery floors (my hubby sometimes gets a little over zealous when he mops)
8. Getting nail polish for $.50 so I can paint my toenails purple.
9. Peanuts.
10. Grape Kool-Aid.

Tally of medical bills and # of migraines

2011-06-05T07:00:00.001-05:00

In one of my previous posts, My medical bill total this year, I explained what my tally in further detail.

I forgot at the beginning of June to update it!

Out of pocket medical expenses from 1/1/11-5/31/11

$1,189 Health insurance premiums

1,401 Medication co-pays

606 Doctor visits

56 Dentist

$2,875 Total

Number of days I've had migraines 1/1/11-5/31/11: 74
Number of days I've had migraines from 6/10-5/11: 146

Giving up before I even got started

2011-06-04T09:35:00.003-05:00

For the second time in my life, I feel like I'm giving up on a career before I even got started. Yet I felt passion about both--I loved reading and writing about the philosopher I studied, Ludwig Wittgenstein. I also loved to read about counseling, the practice, treatments, and theory. And I loved working with people diagnosed with a serious mental illness. With both, I left the field largely unwillingly. Both involved emotionally felt losses that I defined as confirming my greatest fears about myself.

Over 10 years ago, I attended graduate school for 4 years. I was working towards a Ph.D. in philosophy. During that time, I feared I was not smart enough to be a philosopher. Many of my peers seemed brilliant. Adept at using huge words, making complex arguments, and using syntax I could not follow, I felt like I did not belong. I left when my mentor retired. I gave up trying to make a dissertation committee, and I planned to go back to graduate school where a Wittgenstein scholar taught. Of course, the situation was much more complex, but after I left, I found myself interpreting problems in graduate school as being indicative of my failure. My peers seemed to be more independent; they seemed to flourish on their own. Yet I needed validation and guidance, and I left school after I felt that I was not getting either. I left school crushed and fell into a deep depression for months. After I recovered, I could not bear to read and discuss philosophy. It reminded me of my inadequacies. I still feel a drop in my stomach and sadness when I hear of Wittgenstein. This happens from time to time because ironically I ended marrying a fellow student in grad school. He got his Ph.D. and he teaches philosophy for a living. I still tell people I left because I hated to teach. It is true I wasn't that fond of teaching, but I loved doing research and writing. Teaching was only a part of the reason I left.

In the last year, I was forced to leave grad school because of my medical problems. This time, I was working towards becoming a counselor. I had completed most of my coursework except for practicum and internship. It pains me to hear my peers talk about graduating and getting jobs they like or don't. As I did with philosophy, I find myself retreating from anything that reminds me of counseling. Just as I felt when I left philosophy, I'm afraid my failure to finish school is indicative of my shortcomings. I fear I would be a horrible counselor and am far too much of a nut to help anyone. Again, I wait for external validation. Only a few of the professors in the program have encouraged me to return to school when I get better. Without that encouragement, I fear everyone else thinks I'd be terrible at counseling.

And again, now that I've left school, I'm turning my interest to other fields. The thought of maybe volunteering in the mental health field if I ever get better makes me panic. A few weeks ago, I was talking to a friend about how hurt I was that more people didn't contact me when I left school. I assumed it was because there was something wrong with me--that they didn't like me or didn't think I'd be a good counselor. My friend assumed there was something wrong with them--that they were jerks or wouldn't have responded to anyone in a similar situation. It seems absurd, but this was an interpretation I had not considered. I'm trying to stop my retreat from counseling and make some peace with it instead of giving up on it, and thereby giving up on myself. It seems impossible to do so, but I'm going to try anyway.

Huh? Didn't you only have one leg last week?

2011-06-03T12:54:00.001-05:00

I am very excited I was awarded disability a month after I applied, but I also have mixed feelings about it. It feels so wrong to be disabled at 39. I am having a hard time accepting it. I realize I'm not special and lots of people become disabled at young ages including children. I understand fairness does not come into play in illness, but I am still pissed off.

My mother in law left yesterday after visiting us for several days. I had migraines almost every day she was here. I wanted to watch tv and movies with her or watch the cats go ballistic over squirrels in the bird feeder outside our living room even though these activities increased the severity of my migraine attacks. It took me a few days to realize the activities were doing so.

Quite frankly, I'm worn out. I feel like crap when I have the attacks and for a day or so after the attacks. I haven't felt good for more than a day in months and very rarely have a felt good for even a day. I'm so sick of trying to take care of myself and take it easy.

My brain is beyond boggled with all these migraines and it's driving me batty. A man came to our door last week and offered to buy one of our cars that we had been meaning to get rid of for about a year. Being chronically ill allows me to put stuff off indefinitely even though I shouldn't. As I showed him the car and explained what needed to be fixed, I could have sworn he said he had one leg. He hopped around instead of walking. I remember being confused because his pant leg looked normal. It wasn't flapping in the wind or anything like I would expect it would if a person was missing a leg. I was befuddled when he returned after a week and walked normally. He even helped push the car! I guess he must have said there was something wrong with his leg rather than him only having one. These instances of mis-memory are quite confusing!

MIA

2011-05-27T08:31:00.002-05:00

Sorry I haven't been posting. I've been feeling so ill with the migraines. I'm worn out! I got great news though! I was approved for disability! Woot! At least I don't have to worry about money now. I'll be back to posting after I start feeling some better!

Please play "I like big butts" at my funeral

2011-05-22T19:16:00.000-05:00

A few years ago, my husband got me a CD for Christmas called -- oh hell I don't know what it was called, but it was all music about butts. There was this song about donkey butt (eww), "Rump Shaker," of course there was "I Like Big Butts," and "Big Bottom Girls." I was just trying to figure out what it was called and when I typed in "butt music" in Amazon, all this Bach came up. Dumbfounded, I told my hubby about this odd result. He somehow knew the conductor for all these Bach albums was a guy named Butt. How does he know these things? He's so weird. Anywho, I love music about butts! They are perfect comic relief for lots of occasions: on my way to take a final exam, feeling sick, being grouchy as all get out, etc.

I think I also like butt music because I have butt envy. I have a pancake butt. It's a curse I inherited from my Dad. I never understood why my Dad has chosen to wear suspenders instead of belts. And I wish I never did understand. The reason became clear as I grew up and my butt refused to grow at all. Wearing a belt becomes pointless if I am trying to keep my pants up. Having no butt, the belt offers no help. Hence, I believe my Dad wears suspenders to keep his pants up. I've never actually confirmed this with my Dad. I might want "I Like Big Butts" and "Big Bottom Girls" played at my funeral, but talking to my dad about his legacy of no-butt-ness would be awkward.