It’s 5 2 o’clock in the morning… This pain is getting boring… I should be bed soon… but I’m not sneaking to my bedroom… so I thought I would just wait here… while I wipe up my tears…

Alright. You’ve called my bluff. That is not the words to Lilly Allen’s first verse.

It is how I feel. There is a symptom – a serious one –  that doctors don’t inform their patients about when they receive an invisible illness diagnosis. Isolation.

Thanks for the Internet, and all the glorious blogs, chat room, forums, and Facebook and Twitter, we don’t have to feel alone all the time. But when we are in pain, it is easy to hide back into our turtle shell. No one can tell us how the pain should feel, or even if pain indeed exists. Under our shells, we can quietly deal with our pain.

Doing so, though, makes the isolation deeper. That’s never a good thing.

Right now, I feel a cloud of isolation and desolation hovering over me. The ominous presence mocking the parts of me that want to be happy. That want to enjoy life as other people do who are pain-free.

Right now I want to sleep. I can’t.

Right now I want to be in dream land. I’m not.

At least there is YouTube and endless of “get your butt in a better mood, girl” music. It’s not working very well right now, though.

It’s not my custom to “announce” resolutions until I’ve woken on New Year’s Day, doused myself with caffeine, and let out a good yawn. But there are two I wanted to share because I’m beyond excited! 

Resolution #1 – Try a bit harder to reply to e-mails, FB requests, and Ask Endochick e-mails sooner than I currently am. I have found in the past two years, that the time allotted in my life for blogging has DRASTICALLY diminished. I hate this! How about you? I am going to earnestly give it a go next year and get my buns on here more  

Resolution #2 – An EBook is in the works. Right now it’s in concept and development. The tentative title: The Safe Endo Patient. Right now, I would love your input on topics. I have a general outline, but I really want to include topics relevant to my readers. Feel free to comment here, on Facebook, or via e-mail. I have some time to commit to an outline, but don’t like keeping publishers waiting. I am eager to begin working on this when 2012 drops. 

I’m off for now. Time to get busy ringing in the New Year! My hope for each of you is a healthier and happier 2012  

And remember – everything on this blog is copyrighted at ALL TIMES. My ideas are MY ideas. Plagiarism will be swiftly dealt with via the legal system. 

At the age of 14, I broke down and contemplated suicide. I just wanted the constant name-calling, stalking, and abuse to stop.

I was an awkward child – tall for my age, highly intelligent, and social inept. I could not relate to children my age and was only comfortable around people much older than I was. I hardly ever watched cartoons. Instead of Paula Abdul and MC Hammer, I “rocked out” to classical music and Swing music from the 1920′s. My style was eclectic and unique. And “becoming a woman” at 10 and going from scrawny to curvy in a summer, only made things worse.

Things were rough in school. I was poor and odd in a sea of the rich and popular elite. When my parents divorced, things went from bad to hell-on-earth. Not only did I stand out for being different, now I was the only one in my class who lived with a single father.

We went from struggling for money to surviving on government assistance.  From affording department store clothing to scrounging, rummage sales and thrift stores. Do you know those families that receive church handouts during the holiday times? Yep. That was my family.

So, now I really stood out.

As if daily bullying was not enough, when I turned 13, a girl named Jessica spotted me on the bus. From that day on, it became her personal mission in life to ruin mine.

She stalked me on and off the bus. And when our physical education class was scheduled together, she interfered with my privacy. I had to start dressing out in the bathroom stall. Then she would climb under it, or look over it. She called me “dike” and spread rumors that my female friends and I messed around. Any boy who even looked at me, she was quick to tell them I was a lesbian.

I was not a lesbian, though. And I felt bad for some of this kids I knew who were struggling with their sexuality. People like Jessica made my life a living hell all based on a lie, I could not imagine what they could do to people who were gay.

With time, her abuse turned from verbal to physical. I had landed a part in the musical and had to stay after school for practice. I was leaving the choral department one evening when Jessica and her three thug friends jumped me. I only got away because a teacher came walking down the stairs.

For years, I had cried to my parents and teachers. I had refused to go to school. I had skipped school. Hid out in parks, praying the school would not call my house. Teachers told me to toughen up. My dad told me to stop being a geek. And it got to the point where I felt no one was listening to me. And they never would.

I felt isolated. Worthless. Miserable. Then numb. I just wanted it all to end.

Thankfully, something stopped me. I stopped and realized what I was contemplating. Still, no one listened to me until I broke down before a choral concert, crying, “I don’t want to die.”

It has taken years to heal from the torture and pain bullies caused. There are still scars I will live with my entire life.

These scars ache when I hear of children taking their life due to bullying.

Over the weekend, I learned of a 10 year-old who took her life because she was being bullied. Teachers, school officials, even the girls’ mother failed to take her concerns seriously.

Her story reminds me of my own – children calling her names, calling her gay, parents denying her pleas for homeschooling.

Why does this continue? What is wrong with our society that children cannot get the help they need? Why does our society foster hatred?!?

BULLYING IS NEVER OKAY. 

If you or someone you know is a victim of a bully, tell an adult! Don’t let them ignore your plea for help!!

Please take a moment to check out and share some of these Stop Bullying resources. Together, we can make change.

Stop Bullying.Gov             Bullying Prevention Resource 

Kids  Against Bullying         Childline        Kidscape

I know there are many more valuable anti-bullying resources I have left out. Feel free to add any in the comment section to help others.

If you or someone you know are contemplating suicide, please do not hesitate to seek help. The National Suicide Prevention Lifeline – US – has a section on its webpage about bullying prevention. In the UK, there is the HopeLineUK. Their number is confidential – 0800 068 41 41.

When you fight the demon that is dysautonomia, being exhausted and stressed are things you want to AVOID. Yes, like the plague. Where’s my “GO AWAY” sign?

I am exhausted, though. And now bedridden – in a way, at least. Yesterday, despite having taken my Mestinon and other medication as directed, I felt like crashing. My body was giving out.

Since last Friday, I’ve been experiencing blepharospasms. My right eye feels as if there is a brick in it, weighting it down in the socket. The slightest breeze – or normal indoor atmosphere – irritates the surface increasing the twitching and blinking.

All weekend I’ve had moments where my body just… twitches. It’s like tremors running through my legs, hands, arms… and it’s exhausting! I can’t seem to settle down!

And all this has led to some serious exhaustion. At this point, I had to call family to feed me and help me to the bathroom. For someone who is very independent, needing someone is just terrible and can make you feel worse. But I standing makes my blood pressure fall, dramatically, and I start to black out. To even get up and go to the bathroom, it take preparation. Preparation to sit without blacking out. Preparation to stand without blacking out. And to walk… eat… drink… or just not blacking out while laying here on my couch!

The reality of my situation makes it difficult to relax and get the much-needed rest. And my diabetes insipidus doesn’t help the situation. I need to get up for bathroom every 20 minutes or so. And I can’t skimp on my water intake when my BP is low!

At this point, I’m merely trying to avoid hospital. Especially by ambulance.

Episode IV: A New Drug

It is a period of bodily war. A new medication, striking from a hidden base, has won its first victory against the evil Dysautonomia (autoimmune nervous system dysfunction & POTS). During the battle, Endochick’s spies managed to steal secret plans to Dysautonomia’s ultimate weapon, DYSPHAGIA, an armored space station with enough power to destroy any chance of a good meal. Pursued by Dysautonomia’s sinister agents (dysphagia, dyspnea, & tachycardia w/syncope), Endochick races home aboard her starship, custodian of the stolen plans that can save her people and restore freedom to her taxed autoimmune system….

Instead of “the force”, the myasthenia gravis medication, Mestinon, has saved my rebel forces.

It is odd that this medication is actually working for me, given that my first go with this medication had very mixed results. In fact, I was hesitant to try it again.

Apparently, as my neurologist explained, my illness during that weekend and taking it on a full stomach (I insisted I did this because of numerous patient accounts suggesting this method to eliminate upset stomach) contributed to my reaction with the medication.

I agreed to have another go. After all, I was badly losing this battle. My next options were increasing water intake (my endocrinologist advised against this) and those lovely compression stocking – the kind that go to your WAIST. The summer I had to wear these… well… it was miserable. Seeing as we are headed into cold weather, this option didn’t seem to bad. But if you’ve ever worn them, you would understand why any one would not want to venture down that road if they could help it! They are nearly impossible to get on. They need to be hand washed EVERY night or they start smelling like a care home. And you are more likely to get an itchy rash, especially if the weather is dry. Frankly, I already have an awful time with dry skin because of my thyroid. I have no interest in compounding the problem!

So… to avoid these inconveniences, I was willing to give it one more go. The doctor reassured me of the medication’s short-lasting effect (usually 4-6 hours). He also advised taking it 1 hour before a meal, on an empty stomach. This made me nervous.

I found, when taking it this way, that within 40 minutes I can breathe easier and swallow. Then by 1 hour, I have no problem eating. I can eat slightly more in one sitting (about 1.5 cups worth of food), but I can swallow it! There are still some textures I cannot do, and that doesn’t concern me too much. At this time, I don’t feel it’s worth increasing the dose just so I can eat pasta. And by eating these small meals every 2-3 hours, my metabolism is even throughout the day. I don’t get HUNGRY!

With my food sensitivities, eating bigger meals causes problems. For instance, I can have a little bit of dairy in spurts. That’s often doable, except when it’s a heavy dairy dish and I eat too much. Then I’m in trouble. This way, I don’t eat that much anyway. And I find myself eating healthier foods ALL THE TIME because I want each little meal to count.

For now, Mestinon is fighting the evil battle and it’s blown up the death star. I’m just hoping we don’t end up with The Dysautonomia Strikes Back sequel, in which I have to up the Mestinon. But I will cross that bridge if I ever get there.

Bottom line: If you’ve exhausted all options for your dysautonomia, especially POTS, and you’re looking into medications other than beta blockers (I cannot take), check out Mestinon. Not every neurologist or cardiologist will prescribe this, but due to wonderful new research, this medication is growing a fan base for the treatment of POTS.

]]> http://endochick.wordpress.com/2011/10/08/mestinon-2-the-journey-continues/feed/ 5 endochick http://endochick.wordpress.com/2011/09/25/mestinon/ http://endochick.wordpress.com/2011/09/25/mestinon/#comments Sun, 25 Sep 2011 22:15:53 +0000 endochick http://endochick.wordpress.com/?p=1398 Continue reading →]]> Mestinon is a popular drug for Myasthenia Gravis. It helps with the muscle weakness and fatigue that is a common complaint in people suffering from MG.

There seems to be strong evidence that this medication can help patients with dysautonomia. Many of the symptoms from each disorder overlap, and, from what I’ve discovered perusing the net, MG is often misdiagnosed as dysautonomia.

So why has my neurologist decided to give this medicine a go?

First, let me stress I don’t endorse any specific medications. What follows (this also applies to future content on this topic) is an account of my reaction to the medication.

With that said, one symptom has plagued me since I was 15 – dysphagia (problems swallowing). It was never something that bothered me to the extent that I would bring it up to a doctor, though. It was merely a nuisance. Lately, though, it’s been a nightmare. Daily struggles eating with random moments where I can’t swallow anything!

While searching the DINET.org forum, a site and forum for those who have dysautonomia, I ran across Mestinon. So many people on there were having positive experiences. They had hope.

As I considered giving it a try, or asking my neuro to let me try it, I read more. I discovered that this drug can help with slow GI motility, as well. I’ve had these issues since birth! To be free of laxatives and “fat pants” because of constipation days, bloating, pain… wow, I’ll try it.

Then I discovered it can help with what I call “dysautonomia chest” – this feeling of breathlessness. Lately, just like the dysphagia, dyspnea has been a troubling dysautonomia symptom to be plagued with. Daily bouts, lasting hours at a time. Being  out of breath is exhausting.

So I started with many hopes…

I took 30 mg. and went into a panic attack type mode! I’m not sure if this was the meds or my fear of new medicine, stemming from my sensitivities! My husband thinks I got out of a hot shower and stepped into cold. This trigged something.

Regardless, I 24 hours off. I tried it today, but with the dose halved.

It wasn’t as bad. Didn’t get panicky, but I did get shaky about 30 minutes into it.

It helps with the swallowing, and at the 30 dose, it helped with the breathing. At the 15 dosage it seems to make my breathing a little more shallow – but I’m not sure. My legs cramped, as well.

It’s out of system, and I’m due for another pill, but I’m not sure if I want to take it.

My swallowing is bad. But I feel human.

I’m not sure if these side effects will get better or go away with treatment… I’m not familiar with this medication.

It also seems I’m getting a cold with an ear ache. I’m not sure if this is the medication. Or, I’m really sick. And if so, is that causing more side effects from the medication!

With the more research and experimentation I do, I have found that I am extremely chemically sensitive.  I hadn’t linked this to endo until I started to find articles linking the two.  So I slowly removed as many chemical exposures in my life that I could.  And gradually, I have felt better and better.  But as my endo gets worse, I seem to be becoming more and more chemically sensitive.  So I am wondering if this is something you’ve explored?  And if so, any good ideas?

The link between chemical sensitivities and endometriosis was something that had never occurred to me until recently. Over the years of blogging, I have been privileged to hear from women with varying stories, varying paths on their road to diagnosis or coping with endometriosis. And then, as more accounts poured in and I met more and more of these women, a realization occurred: those stories were not as “varied” as I had once thought.

Sifting through the comments, emails, interview accounts, I saw common illnesses. Thyroid, arthritic conditions, autonomic nervous system dysfunction (POTS, dysautonomia),  too many to even list here. Then this one – MCS – multiple chemical sensitivity – sprung up.

Personally, I didn’t think much about the condition. But as a recent run-down of newly acquired drug and food sensitivities have changed my life, I started wondering if there was a connection.

My endocrinologist has noted that in the last 3 years, I have become allergic to three medications and highly sensitive to food additives. One of these food additives is high fructose corn syrup. If you’ve seen the documentary Food, inc. you will know how this corn alteration has proliferated the food industry. It’s cheaper than sugar. It’s sweeter than sugar. And it’s destroying our health… but that’s a post for another day.

What started off several months ago as a sensitivity to HFCS is now also a sensitivity to plain old corn syrup. I’ve found if corn syrup is within the first three ingredients in a product, it will make me sick. Recently a family member thought a dish was HFCS free. I ate a LARGE portion of this, and within 30 minutes my stomach was distended to the girth of a four month pregnant woman! Looking at the label, not only did it have HFCS, but corn syrup was the second ingredient with HFCS being the FIRST!

This left me thinking, in a world whose food industry is corn dominated, if I become sensitive to even corn syrup, what is going to be safe for me to eat?

Then I started to look into this link between endometriosis and multiple chemical sensitivity. Since there seems to still be debate on diagnosing MCS, it is hard to find good research looking into the link between that endometriosis. And we know research into endometriosis is already lacking, so, yeah! But, yes, there are articles, even doctors, linking chemicals and food additives (which are chemicals!) to endometriosis. And there is a link to these and autoimmune disorders, which is why my endocrinologist is in the endometriosis is an autoimmune camp. And I agree with her.

But if I were to just survey the endometriosis population, I see a very prominent theme: multiple illnesses of an autoimmune nature. My endocrinologist views endometriosis as an autoimmune disease – and being just one of many illnesses existing under the “autoimmune umbrella”.

I have a condition called autonomic nervous system dysfunction. I have had it since I was a child. There is a link between this and autoimmune diseases.

My endocrinologist has attributed the following to an autoimmune condition where my body is, in essence, fighting itself -

autoimmune diabetes insipidus

Hashimoto’s Thryoiditis

endometriosis

autonomic nervous system dysfunction

And now… drug and food chemical sensitivities

I cannot say there is a researched link between MCS and endometriosis, but it’s almost as if we all have pieces of the same treasure map and each piece leads us to the same fixed point: chemicals and additives that have been flooded into our daily lives, whether we want them there or not. They are in the air, the water, our food, our products!

In my opinion, getting a good doctor who will listen and investigate is the key to understanding how all this craziness is connected.

Years ago when I was first diagnosed with diabetes insipidus, about a year after being diagnosed with Hashimoto’s, and a few years after being diagnosed with endometriosis, and SEVERAL years after being diagnosed with autonomic nervous system dysfunction… (see a common link here – it just keeps piling up!), I was told, “it’s all a big umbrella”. And now… medicines (all of which I have had before!) and food (crap I grew up on) are crowded under this umbrella.

And… I’ve noticed… I smell things others can’t smell. I’ve changed bathroom products because the smell gave me a headache. None of this seemed not-normal to me until I’ve talked with other women who have endometriosis and thyroid issues and a host of other things we have in common,  and it has made me wonder – just how stinking big is this darn umbrella?

To me – there is a link. And it just shows how important research is, because we need to find that fixed point on all of our treasure maps. We need the research community to find that X.

Sara, thanks for your question!

Anyway. Formalities aside…. I would like to celebrate my years of blogging and helping women by giving back.

I will be working on a series of posts based on reader questions. Submit them to me via e-mail or comment on this post. It is that simple. Do you have questions about treatment options, navigating health care… endometrisos, chronic pain, or caring for someone with a chronic condition? ASK!

And the best questions may make it into an even cooler future venture of mine… shhh… spoilers.

Get this post out there. Tweet it. Retweet it. Facebook it. Digg it… whatever.

As I fell onto the landing below me, my hearing went. I struggled into my pocket, grabbed  my cell, and as I searched for my co-worker’s number, my vision began to dim. I clicked an entry – I was praying it was her – and thankfully, it had been. I couldn’t hear, and now I couldn’t see. But I whispered out, “help I’m on the stairs” before I dropped the phone.

She found me. Helped me, blind and deaf, into the building. Once I recovered, I was able to talk them out of phoning for an ambulance. Instead, I phone my physical therapist and he saw me 10 minutes later. Once his magical hands were done, I was able to walk out, get in my car, and drive home. I wasn’t 100%, but I was functional. And within 4 hours after that, I was perfectly fine.

It’s been 1 year this month since I have had a basilar artery migraine. 1 free year of pain, and numbness, and blindness, and deafness. 1 year in which I have been able to work outside the home. It’s been beyond wonderful.

When I suffered from these horrible migraines, I feared committing to anything. How could I know I would be OK 1, 2, 3 weeks from now. I didn’t even want to plan 1 day in the future. I hate letting people and myself down.

The first time I saw my physical therapist, I hated him. I thought my neurologist had given up on me. How was this guy to help me if a whole list of medication couldn’t for long?

I am glad I gave it a try. I am glad I stuck with him. Every time I felt like giving up – the results were just not coming fast enough – he never gave up on me. He empowered me, as good clinician should, and said he wasn’t going to stop until I was pain-free.

He is getting a big card from me this month. He changed my life. He gave it back.

It’s late. Again.

I find myself in a familiar position – in pain. Tired. Unable to sleep because of the discomfort.

It’s been 4 days, roughly. Give or take an hour or two.

It started with bloating. Not mild bloating – the vague feeling that your pants are a bit too snug, or where you find yourself pondering, “what did I eat?” Bloating. Serious, granny tummy, doubled in size, “no ma’am, I’m not 5 months pregnant” bloating. And it’s vile.

My work trousersy were snug  so tight I couldn’t snap the three clasps, let alone zip the zipper. This was on Monday.

Meticulously, I watched what I ate. Nothing offensive – nothing that could bite me back later – entered my mouth. I swear!

Monday’s bloat turned into Pajama Bottom Tuesday. If it had a zipper, button, snap or clasp, it didn’t budge past my thighs.

Then there was pain.

Tuesday night I climbed into bed, a nasty bloat hanging in my tummy and now pelvic pain. As I pulled the covers to my chin, I was seized with an agonizingly sharp pain that ripped from the front of my pelvis to the sacrum. And it kept coming in waves, the after shocks leaving a mild ache in the left side. They felt like labor pains.

Pain the next day – mild.

Paint the next night – an encore of the Searing Pelvic Knife Dance featuring Madam Ovary and the” I need an Epidural band”.

It’s been a few days/night now. Last night, I was desperate. From the Chemist’s I snatched a bottle of magnesium citrate and chugged it.

Even after the vile, salty concoction worked, I am in pain. I am uncomfortable. My stomach is still BLOATED. 

And now… there is a central hardness near my belly button.

So again, tonight, I cannot sleep. I lay here, with the laptop light comforting me. It provides very little, though.

I’m playing the Pain Game. And I seriously want to win it and NEVER play again.