Bah! Migraines, migraines, migraines!

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.

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Would like some cheese with that whine?

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.

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Tally of migraines and med bills

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

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Stupid doc and lots of migraines

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. 

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

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.

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Congratulations to South Sudan, a new nation!

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. 

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Transparent Thursday

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!

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98 migraines and a boatload of medical bills

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

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

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.

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Weird Wednesday: The silent crippler

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.

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Back on the low carb wagon

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!!

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

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?

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