Thursday, January 2, 2014

Quit Micromanaging My Health, It's My Business!

Trigeminal neuralgia is severe facial pain known to doctors as the Suicide Disease, and for good reason. Not only is this type of pain agonizing, it is difficult, often impossible to treat. I need treatment for my trigeminal and glossopharyngeal neuralgia, but the day I walked in to start things off, I was told the government has denied me the beginning to my treatment: a shingles vaccine.

Nope, didn't ask a government agency to pay for it or even to administer it. They however, without being a physician who has examined me, or knowing me or my illness, have created a blanket law that states that no one will be allowed to give me the vaccine until I am 50, even with my doctor's orders and written prescription. Not in the USA anyway.

I am 49.

My neuralgia is suspected to come from my autoimmune disease, Sjogren's syndrome. It began many years ago in my right ear, and has slowly spread. A few years ago, it showed up on my left side too, and lately has spread like wildfire. Without quick treatment, my neuralgia may become worse, and permanent. Since I cannot safely take the oral meds needed to try to control it, I am in trouble. My rheumatologist has prescribed a biologic drug to modify my errant immune system, which we're praying will help to control the inflammation and crazy nerve impulses that control my life. We've been slowly working up to this treatment over the last year and a half.



I now have what feel like knitting needles stabbing my eyeballs, bee stings in my eyelids, and scissors stabbing my jaws, ears, throat and tonsils as well as the base of the right side of my tongue. Some days I can neither eat nor drink, and talking is impossible without indescribeable pain. Add a Migraine, and I am frantic with pain that isn't controllable in any way.

My doctors feel that the biologic may be helpful, but I need a shingle's vaccine first, to make sure that, after we tank my immune system, I don't make the nerve problem worse by getting shingles (a nerve condition) on top of everything else. 

The government thinks I am too young. It hasn't taken into consideration that this immune system treatment will be lifelong, and dangerous. It hasn't taken my disease into consideration at all. That's what my doctors are for. My doctors insist this is vital and I agree with them. Simply said, neuralgia worse than this is not compatible with life. 

I don't know what I can do at this point, but pray and make phone calls. Starting today, that's the plan. Right now, I get by, moment to moment, day by day. I haven't blogged much lately, due to the medications, the intense pain, the brain fog and bad eyesight, and I am so very sorry.  I hope you'll hang in here with me. 

This girl could use a few friends on her team :D

Sunday, July 21, 2013

Why I Bought a Wetsuit for my Health - the Saga

UV rays are the enemy of lupus, Sjogren's and yep, even Migraine patients. So what does a person do when going to the land of the midnight sun for a cruise vacation? Cover up.

Really cover up.

One of the things I miss the most is swimming. I swam competitively from the age of seven until I was 17. I was actually pretty good too :) I own an in-ground swimming pool we haven't even opened up for the year since around 2005. I look outdoors at the diving board and slide and yearn for the days when we would swim as a family nearly every night, friends and neighbors right along with us.

For this trip, I decided I was going swimming, no matter the cost. Well, so long as I could do it without causing an autoimmune flare. So, I bought a wetsuit.

I began looking right after Christmas.  After several weeks of looking, I had an idea what I thought I needed - a triathlon suit. These suits are made of thin material in varying thicknesses depending where the suit is on your body. The thicker the suit, the warmer the suit. To make it flexible so you can actually move those arms to swim and expand your chest to breathe, there are panels that have very thin material. The suits cover you from neck to ankles and wrists - well most of them do anyway.

Because I needed something to keep my core warm (I do NOT hold my body temps well and suffer fairly serious Raynaud's) and to keep 100% of the UV light out, I chose the full body version. Coated with a rubber-type coating, it was the only thing I could find that would completely protect me from the sun and fluorescent lights sure to be present on the boat.

Despite the suit, my head, neck, hands and feet will be exposed to whatever light is present. This will likely limit the hours I can swim to late at night when the sun is at its lowest. I'm okay with that. Maybe that will keep me from scaring the kids sure to also be present on the boat, lol.

To cover my head, I've decided on a do-rag. Purple of course :) I can't stand the feeling of a hat on my head because the allodynia from the 24/7 Migraines makes me so sensitive that washing my hair hurts. I do have a cap I'll be bringing just in case there is a certain amount of time I can stand wearing it, but will save it for our excursions - whatever those will end up being.

Sunscreen is a must, but for a person who is allergic to most sunscreens, this is a challenge. I have used a particular brand in the past, but it is not waterproof. The only sure way to keep the sun from damaging my fragile cells and triggering a mass immune response, is to be covered. This means zinc oxide. I have the option of gloves and socks too, but I'm going to try to avoid using them if I can.

Add my bug-eyed sunglasses, and I am sure to be quite a site for people to stare at. On one hand I don't know these people, and it really doesn't bother me. On the other hand, I also know that it will bother me.

Each time I have to make a concession to do something most people consider normal... each time I see a family member or friend roll their eyes at me... each time I look in the mirror... I realize that I really am sick and it is harder to *not feel* the differences. Oh, and those eyes that look at me when I have to be dressed in a get-up like this. Ugh.

Once I figured out the type of wetsuit I needed, the search was on for the exact make and model. Who knew there were hundreds of these things out there to choose from - and each of them different!

I wanted the expertise of professionals, which I got. I wanted someone to just guide me and tell me "Buy this one, it's the right one for you"  but didn't get that until May.

Great! Now I finally know which one to get and I go to order it, only to find they have none in my size. I pray that the backorders will come through and I'll be able to get my perfect wetsuit (which also happens to have purple accents!)

No matter where I looked and how long I waited, I had no luck with the suit of my dreams. So I began the search all over again.

Eventually I found a pro that told me he knew just what I needed. When we looked at it, it too was sold out.

So he showed me another.  It wasn't sold out, but was an additional $150 more than I'd allotted to spend and it was a thinner suit.

When I placed my order, it too was sold out.

What the heck?!

I didn't have time to Migraine, get ready for a trip AND start over from scratch for a third time. So I began looking very deep for the last suit and was amazed to finally find one.

Once again, I placed my order. I emailed the company and thought they answered none of my other questions, they were in California, so I hoped ovenight shipping would work.  I wrote them again and told them so long as I had it by Saturday I thought I'd be okay, as that would give me sufficient time to return it for another size if needed.

Friday at about 4:15pm I receive a call telling me they goofed and didn't have my size. So, they wanted to upgrade me to a thinner, better suit.

But I don't want thinner, I want thicker!

I tried to look it up online, and found virtually nothing, probably because it's a newer model.

Faced with an impossible Migraine and an impossible decision that needed to be made within the hour, I agreed to the upgrade and called her back. Great! They can still get it to me by Saturday because I've paid for overnight shipping.

A few minutes later, another phone call. *Oops* they can't get it to me overnight because we don't have anyone to deliver overnight packages.

Are you kidding? Sadly, no.

I asked them to pro-rate my shipping back to 3 day since it would be Monday before it arrived, but they couldn't.

I wanted to pull my hair out and vomit all over the phone just for good measure. This just shouldn't be so blaming hard.

"Yes, please send me the suit, just so long as it arrives by Monday. That won't give me any time to get another size if this is wrong or won't work for me, and my trip will be ruined, but oh well."

So, on Monday my wetsuit is finally to arrive. It's my third choice, cost me an additional $150, isn't but half as warm as the original, but at least it's getting here!

Stay tuned for more of the wetsuit saga, lol.

Sunday, July 7, 2013

Migraine and Chronic Illness: Preparing for the Vacation of a Lifetime

When I was about 5 years old, my father went to Alaska. When he came back, he gave me a little stuffed blonde seal pup and promised that someday he wanted to take us all there to experience some of what he got to see on his trip.

It's my 30th anniversary, and my parents' 50th anniversary, and we're going on a cruise to Alaska. Finally!

When I say "we" I mean my parents, my hubs and both our kids with their new spouses, and my brother and his family (which includes 3 kids under 8 - one autistic and mentally challenged). To make the trip easier on my brother, my parents chose a cruise specifically for families of autistic kids.

Our situation is unique, and this brings forth some unique things to have to deal with in the planning and execution of such a trip.

  • I am putting together a current list of my medical history - medications, surgical and accident history, allergies, medication sensitivities, physician information etc. I have some strange and complex issues going on and it's vital that I have this information with me at all times in case something goes wrong.

  • I am extremely light sensitive. My Migraines make living without incandescent lighting, or going out doors without my special sunglasses, miserable. We're going to be there during the *midnight sun* so I'm trying my best to plan for the trip by making sure I have ALL my sunglasses with me - just in case.

  • My autoimmune issues mean that UV rays increase my antibody production, which attacks the organs and tissues in my body and causes a flare of disease that makes me very sick. As a result of this, I said I could only go if I had a cabin that at least had a window, as it is likely I'll be spending the bulk of my time there and at least want to be able to see the environment around us. It's not a perfect solution, but hopefully it will make me feel included and allow me to feel like I'm actually in Alaska and not just along for the ride. The noise I'm pretty sure I'm going to be exposed to with the sheer number of kids on board, is also an issue that I'm hoping will be made easier with our cabin. 

  • I am working with my headache specialist to be sure that I am well-equipped with a written rescue plan if I'm caught off guard while on the boat. Cruise ships are not known for having fabulous medical services, and I could be in serious trouble if my medications fail me. I don't know yet what all this will entail, but I want to have a mag IV setup as well as injectable rescue meds. Going to the ER in this case could potentially mean a helicopter ride to the local hospital and the loss of the trip as well as finding a way back home again. I need to be as prepared as I can.

  • I have been working for the last 7 months to plan ahead for maximizing my preventive therapies to maximize the time I'll be able to participate in activities. Things didn't exactly work in my favor where this is concerned - I basically am starting from scratch on my Botox right now - but it's the best we can do.  I'm all about optimization right now, so no sense crying over spilled milk.

  • We're planning our excursions this weekend. It's vitally important to me that my family not be held back because of my chronic illness, so I kind of forced them to get together and sign up for the trips they really want to take. I haven't signed up for anything yet, because I really don't know what I can do at this point, and I may end up having to spend a good deal of the shore time in my room to avoid the sun. This again isn't ideal, but crying about not getting to do the things I've dreamed about for 4 decades is really not helpful. (I admit, I've done my fair share the last week I'm afraid)

  • We're planning how to pack all my medical supplies and equipment so that I don't have another run-in with airline staff over my need to have my things on board with me vs in checked baggage. It's going to take cooperation between all of us to make it happen safely, but thankfully my family knows how important this is and I think we'll be okay.

  • We are taking a larger plane to get to the port in Seattle. This will help stack the deck in my favor that there will be fewer problems getting my medical supplies on board, having the room to stow them and having more restroom choices should I need to make an emergency run for the border. 

  • I'm trying to concentrate on the things I'll be able to do while on the trip, instead of those things I'll be sitting on the sidelines for, or missing altogether. I just CAN'T get caught up with being sad about what I want and need to make peace with being happy with those I can do.  This is a daily struggle at this point. Sometimes, even moment to moment. Those of us with chronic illness know full well that this happens though, and often this is how we get through each day of our lives.
There may be even more things that we do to maximize our experience on this wonderful trip. I'll write about them as they come about. In the meantime, maybe some of my readers have suggestions for me that I've not yet thought about??



This post is my response to the July 2013 Headache and Migraine Disease Blog Carnival.

Monday, June 10, 2013

Tired of Losing

This month's Blog Carnival topic asked participants to choose their favorite blog carnival post.

Because I am one of those sponsoring the project, I read each and every post.  I find myself daily saying under my breath "WOW", or sometimes giggling.  I tend to think of fellow Migraine and headache bloggers as a part of my adopted family.  They're more than just friends.

Choosing a favorite blog post is about like choosing my favorite child.  How can I do that?!!

So first, I want to encourage everybody to go to the Fighting Headache Disorders Through Awareness blog and catch all of the fabulous links.  Sit back, read and enjoy while you learn a few things... about living with a headache disorder as well as about the people in the community.  Then I would dare you to come up with a favorite post!

So, I'm not going to.  I'm going to tell you the one I had the best time writing myself.... and why.

My choice is "Premonition" and it talks about treatments in the future.

Why is this my favorite? 

I lost a friend to Migraine two days ago.  Coincidentally, it happened when I was busy working creating an education/awareness video we hope to release soon.  In it we use the song by Third Day "I Need a Miracle".

The song tells the story of a man who had given up. He went into the woods to end his life. In the end, he chose to go home instead, and that night they found the miracle he needed.

What if he hadn't waited?  What if something awful had indeed happened that day?

I am sick and tired of losing people to this disease.  I am sick and tired of the stigma.  I am sick and tired of waiting, and playing games, and the derision that is happening within the community at large.

NOW is the time for this to end... not tomorrow.

But we don't have much choice.  We must remain patient.  We must NOT give up the day before our miracle.

There are many ways Migraine kills.  Only one of them is when a patient who has suffered longer than they can bear, chooses to end their life and their pain.  
  • Migraine kills when patients have adverse drug reactions to the many things we use to try to prevent and abort our attacks.  
  • Migraine kills when it causes stroke.
  • Migraine kills when a traffic accident occurs as the result of an attack.
  • Migraine kills when medical accidents happen during one of the thousands of treatments we often have to endure.  
We need better treatments that target what is happening in our bodies.

Well, the post tells the rest...



Friday, June 7, 2013

"Pretty Woman" with Migraine

There are many parts to this topic - what you do to look good when you feel like crap and have Migraine.  It's really all about knowing a few things, then planning for them ahead of time.

I once had someone tell me - every single day actually - that I needed to get up and get dressed, all the way to the shoes.  It would get me ready for the day.  I hated it, but she was right. That meant planning the night before what to wear, then lay it out, so it's ready to go first thing.  No thinking, no time needed to plan when I'm tired and cranky.

Getting dressed, for me, is like owning dogs.  I do it because it keeps me functional.  It makes it so that I have no choice but to keep going on even when I feel awful, like tonight.

Okay, I love my dogs, but sometimes they're hard to own when you're sick.  Most of the time they're hard to own when you're sick.

Sometimes I do even feel better once I've gotten dressed.  At least I'm moving.  Sort of.  Even if it takes me all day to get there.

The other half will be important to read and understand....



If you look like crap when you go to the doctor, patients can often be seen as lazy, not trying, not compliant, or even just as losers.  There's already such stigma re: Migraine patients and their level of education and their stress levels, hysterical brains and laziness, this does nothing to help the situation.  Of course you and I know the truth - some days just getting to the bathroom is all I can accomplish.  Forget dressing.  However, I learned a long time ago, if you want to be seen as a potential drug seeker, go to the doctor looking like one.  If you want to be taken seriously, go with that in mind. 

Remember pony tail holders are made for these kinds of situations.  Caps or head/hair bands.  Even a clean bandana can cover up hair that's not been washed in days.  Clean clothes that look normal - no black, gangsta or biker stuff here. I top it off with a leather jacket or black dress jacket because it makes it look like I tried without trying.  Deodorant/anti-perspirant that's not too strong.  And for gosh sake, please try to brush your teeth 30 seconds, or at least gargle so the doctor can take the time needed to examine you. 

Here's what's not necessary...
  • curled, perfect hair.
  • a bra (unless you're indecent without one)
  • socks
  • makeup - of any kind
  • a purse
  • jewelry, of any type
  • Shaved legs and pits
  • anything stylish.  Just make it clean, and hopefully not clashing.
I have my "Migraine clothes" at the end of my closet so they're easy to get to.  This is about planning for me.  some days my hubs has to dress me, so this assures he gets the right size for my current body weight, etc.  All he has to do is grab the hangers X 2 and help me get in them.  Slide on my slip-on slippers and we can go.  I actually timed it:  It takes 5 seconds for me to put my hair in a pony tail and look like I at least tried.  Thirty seconds if he has to do it.  I can "brush" my teeth with a towel over my finger and avoid the gagging toothbrush, then swish some Biotene so I don't smell like I have dragon-breath.  That's 30 seconds tops.  The Biotene is good for Migraineurs because it has no alcohol, won't dry, has light taste and smell, and acts just like saliva in the mouth, so is good for your mouth, unlike regular mouthwash.  It also contains Xylitol which kills the bacteria in your mouth better than anything else.

A "Pretty Woman" I am NOT.  However, I can appear fairly normal, very quickly if I need. 

It's all about planning.

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday, June 5, 2013

Migraine Challenge: "Carousel"

The song "You'll Never Walk Alone" talks about walking through the storms of your life... that you'll never be alone in them.

Living with chronic illness including chronic Migraine and other headaches, autoimmune diseases like lupus and Sjogren's syndrome, and dystonia means I've been thru my share of storms.  These last few months I've even had additional diagnoses to add to my storms - not something I'm fond of sharing or have happening.

My take on the song is that you may be physically alone, but in your heart you know that those who love you are sticking by you no matter what.



I've lost a lot of friends and family over being sick, so this can be difficult to see.  However, I challenge us all to close your eyes and think of the people in your life, or the pets, that mean the most to you.



It's true, they may not physically be walking your walk with you, but don't they love you just the same?  They may have weak moments and cave into frustration with our illness, but don't we get frustrated too?  When we got sick, they were robbed of something too - us.  That's a reason to get angry sometimes.  I think that's not only expected, but that it's okay.

The trick is, getting through these tough times and still staying friends/family after its all been said and done. 

Right now I have a puppy with a hurt leg on my lap.  She laid her face on my shoulder very slowly and softly, almost like she knew I am hurting today too.  Her soft eyes tell me she's in pain and she wants comfort, and it makes me wonder if she realizes the comfort she gives me today, with her warm presence and the mere fact that she needed me today.

We can comfort each other. 

In the end, chronic illness patients walk their walk alone.  That's the reality.  Nobody can enter our bodies with us, but they can be *with* us in other ways.

Here this beautiful song here: http://youtu.be/A4_NdiPSmbs

Let's try not to forget that there are many different ways our loved ones can walk with us without actually putting on our shoes...

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Hobbies and Migraine

The Migraine and Headache Awareness Month Photo Prompt for the day is Hobbies.


I am one of those blessed people whose hobbies always led to some sort of a career.  Art is one of them, although this is the first and only oil painting I have ever attempted, and it's only about half finished! 

The subject is my 27 year old Straight Arabian Stallion, Ibn Naseri.  I've a long way to go getting the details right, but hopefully I won't goof it up too badly when I get around to continuing it.

Truth be told, I am so involved in advocacy for Migraine, autoimmunity and dystonia that I haven't had the time to sit down and work on a painting.  Someday I pray I'll have it done though, hopefully before my beloved *white boy* has left me.  This year he's looking much better and seems much healthier, so there's a chance my dream might come true...