Friday, June 26, 2015

Learning to Stand Up For Myself (Thanks to my Sister)

Today started as a bad day. For starters, my house has no electricity, due to recent storms. Luckily, my sister, who lives five minutes away has electricity, so I've been staying with her.  Unfortunately, my migraine is still on going. 

I woke up today at 4:45 am with increased head pain. I stayed up until about 11 am, then headed back upstairs to take a nap. Ten minutes later my sister woke me up. It turns out that my mom asked my sister to check our voice mails online, since we have no service right now on our home phone. One of those messages was for me, and it was not good news. 

I am due to go into Methodist Inpatient Headache Unit on Tuesday the 30th to try and get rid of this migraine. However, the message for me was the woman who schedules the inpatient unit and she called to tell me I would have to be rescheduled because they are short staffed this week. Naturally, I was horrified. I immediately called her back, but I got her voice mail. I left a message, then called the Headache Center's front desk (they told me I had to speak to the woman who left the message) and I called the headache unit at Methodist (they told me they didn't know anything about it). An hour later, I received a call back from the scheduler. She told me I would be pushed back a week. When I repeated what she said, my sister, who was in the kitchen, made a horrified face, like o.O. She was so mad on my behalf that I thought she was going to bitch slap someone, and since I was the only one there...(I'm kidding of course. Not about the face, but about the slapping. Moving on now).

Anyway, I explained to the woman that I had tried four different medication bridges and an infusion and they all failed. She suggested I go to the ER but, as I told her, my local ER only gives me narcotics, which make me feel worse once they wear off. I was nice, but firm when I told her all of this. I am particularly proud of myself for not backing down, because usually, I'm a pushover. Eventually, she put me on hold to speak with my doctor. When she came back, she informed me that they were going to keep my original inpatient date of Tuesday the 30th.

I cannot sufficiently explain how grateful I am that I will be going in on Tuesday. I also cannot explain how proud I am of myself that I did not back down. I find it very hard not to do so, but my sister recently told me that I am too nice and I need to learn to stand up for myself. So I took her words to heart and did what I needed to do. 

So while I would not call today a good day, I no longer consider it a bad one either. Here's hoping Tuesday comes quickly and I get some relief soon!

YAY!

Way to go SCOTUS!  Today is a beautiful day!  #MarriageEquality #LoveIsLove

Monday, June 22, 2015

30 Things About My Migraines

I noticed a questionaire going around on one of my migraine support groups called 30 Things About My Migraines and I thought it would be a good idea to post my responses here. I found the list of prompts on migraine.com

  1. My diagnosis is: Chronic daily headaches and chronic migraine with aura.
  2. My migraine attack frequency is: daily but vary in intensity
  3. I was diagnosed in: in 1999
  4. My comorbid conditions include: Chiari Malformation, Intracranial Hypertension, Postural Orthostatic Tachycardia, TMJ, Ehlers-Danlos Syndrome, Fibromyalgia, anxiety and depression
  5. I take 7 medications/supplements each day for prevention and 9 medications/supplements to treat an acute attack (not all at the same time)
  6. My first migraine attack was: at the age of 13
  7. My most disabling migraine symptoms are: nausea, intense head pain, confusion, dizziness, photophobia
  8. My strangest migraine symptoms are: allodynia
  9. My biggest migraine triggers are: hormones, lack of sleep, eating poorly/skipping meals, weather changes
  10. I know a migraine attack is coming on when: I get a weird feeling in my head that feels like the pain is mild but will go full out at the tiniest trigger. It's hard to explain
  11. The most frustrating part about having a migraine attack is: the way it keeps me from living my life to the fullest
  12. During a migraine attack, I worry most about: how long it will last and how many things I will have to cancel
  13. When I think about migraine between attacks, I think: I remind myself that I can't live my life thinking "what if". Sometimes I catch myself thinking "what if this triggers a migraine" and feel like maybe I shouldn't do certain things just in case. But then I catch myself and think "you can't live thinking 'what if' about everything". Instead I chose to be happy and live life to the fullest when I can 
  14. When I tell someone I have migraine, the response is usually: the people I have in my life generally respond with sympathy and concern
  15. When someone tells me they have migraine, I think: how I wish they didn't. I know how terrible it can be and I wouldn't wish this on my worst enemy. 
  16. When I see commercials about migraine treatments, I think: they are incredibly frustrating. They make it look easy to combat a migraine. "Just take this pill, and it will go away!" For the majority of people, it doesn't work that way. There is no magic pill that makes it go away quickly. And these commercials convince people who don't know any better a false sense of what it's like.
  17. My best coping tools are: my wonderful and understanding family, sunglasses, plenty of water, and crackers and soda for nausea
  18. I find comfort in: my family and friends, reading books, and the family pets
  19. I get angry when people say: "oh, it's just a headache" or "I had a migraine once. It wasn't so bad".
  20. I like it when people say: "I'm sorry you're going through this" or "what can I do to help?" Just knowing they care and don't downplay my pain and suffering means the world to me.
  21. Something kind someone can do for me during a migraine attack is: tell me it's ok to do what I need to do to get better, even if it means missing an event that they wish I could come to. They don't hold it against me when I have to cancel plans last minute. 
  22. The best thing(s) a doctor has ever said to me about migraine is: "there are so many treatments out there and we just have to find the right mixture for you. I will never tell you 'there's nothing else I can do to help you'". Knowing that my doctor will never give up on me means the world to me
  23. The hardest thing to accept about having migraine is: having no control over it. Knowing that any plans I make could be cancelled at any time simply because my migraine decides to rear its ugly head. And knowing that my life right now is not the life I pictured and hoped for when I was younger
  24. Migraine has taught me: how to take care of myself. I was (and am) frustrated that my life isn't what I wanted and that I can't work. A doctor once told me "your job right now is you". He also said not many people my age get the chance to explore and discover what they are passionate about. I am getting that chance to really explore myself and my interests. 
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: 

  26. If I could go back to the early days of my diagnosis I would tell myself: to live life to the fullest and take better care of myself. And to never give up hope
  27. The people who support me most are: my parents, sister and brother-in-law, my brother, and my close friends
  28. The thing I most wish people understood about migraine is: that migraine is not "just a headache". It is an assault on the senses and has the potential to reduce the strongest person you know into a sobbing disaster 
  29. Migraine and Headache Awareness Month is important to me because: it gives us migraineurs and headache sufferers a chance to explain to the world what this condition does to us and our lives.
  30. One more thing I’d like to say about life with migraine is: I couldn't manage my life without my family, friends, and doctors. If I had to suffer this on my own, I wouldn't have the hope I have now. I wouldn't have the wonderful life I have now. Even thinking about what my life would be without these people is depressing

Saturday, June 20, 2015

Scars

I have many scars. Some are small, like the ones on my arms from PICC lines, or the ones on my stomach from getting my gallbladder removed. My biggest and most noticeable scar, however, is from my craniotomy and decompression. I didn't know it at the time, but I have Ehlers-Danlos Syndrome (for more info on EDS and my craniotomy, see Origins - Parts 3, 3.5, and 4). And EDS can cause scars to heal poorly and/or cause scars to become thick and ropey when they do heal.  I was lucky that my scar healed well, but it did become thick and ropey. Since I wear my hair short (I have a ton of hair and wearing it long just isn't an option), the bottom of the scar is visible.

At first, I hated my scar. It was ugly, and a reminder of a painful time in my life. I tried leaving the hair on the back of my head longer, to try and cover it, because I was scared someone would see it and say something. I hated getting my hair cut, because then I would have to explain the scar to a stranger.  Eventually, my mom sat me down I and told me that my scar is nothing to be ashamed of. I did something scary and I survived it. That's something to be proud of.  

A few days later, I came across this picture/quote:


And I realized, my mom was right. I earned this scar and I should wear it with pride. I started getting my hair cut the way I like again, which left the bottom of the scar visible. And, surprise surprise, NO ONE NOTICED. All along I was ashamed of my scar and it turns out, no one was paying any attention to it.

So, to all of you out there who may have a scar that bothers them, please remember - you earned that scar. Wear it like a badge of honor!

Wednesday, June 17, 2015

Bridges

A brief timeline of recent events:
*Now Updated!*

May 19 - received Botox injections
May 20-23 - increase in head pain due to Botox shots
May 25, 27, 28, 30 - Migraine
June 1-2 - Migraine
June 3-5 - Haldol/Cogentin bridge, temporary pain relief
June 6-7 - return of Migraine
June 8 - call nurse's line, receive call back in afternoon, migraine continues
June 9-11 - Infusion (see previous posts for information)
June 11 - book inpatient stay at Methodist for first available day (June 30)
June 12-16 - Naproxen/Compazine bridge, migraine continues
June 15 - call nurse's line
June 17 (today) - call nurse's line, receive call back in afternoon, start new Haldol/Cogentin bridge
June 18-19 - migraine continues, sleep most of the day/night
June 19 - call nurse's line, receive call back. Start new bridge of Haldol/Cogentin and Sulindac
June 20 (today) - migraine continues

Bridge - taking a medications or group of medications as prescribed by a doctor for a short period of time in an attempt to break a cycle.

Cycle - a migraine or headache that does not end and resists medical intervention

I am currently in the middle of my forth bridge in less than five weeks. This particular bridge is aimed less at breaking the cycle (though it would be wonderful if it did) and more at keeping me somewhat comfortable until I can go inpatient at Methodist. It seems that, for me at least, IV lidocaine is the only thing that can break a bad cycle.

Which means...I will be writing a blog post about what a stay in Methodist is like!  Keep your fingers crossed that there's a cancellation and I get in earlier.  In the mean time, I will continue posting because I find it relaxing (and isn't that incredibly strange?) and it distracts me temporarily from the pain. Unfortunately, I can not write long posts and I must take breaks, because my eyes are not cooperating and my ability to focus on something for an extended length of time is nonexistent. 

On the plus side, I have several posts lined up to be written and since I'm currently hiding indoors away from the heat and the sun/rain/thunderstorms in my area, I'll have plenty of time to write. And sleep. To be honest, it'll mostly be sleep.

Meanwhile, I leave you with a quote that helps me through rough times like this:



Saturday, June 13, 2015

June is Headache Disorder Awareness Month

In honor of Headache Disorder Awareness Month, I thought I'd share some information about migraines. Because they are much more than "just a headache". 





*Update*
For those interested, I get all four stages when I have a migraine. During prodrome, I get excessive yawning, food cravings, and occasionally neck pain and mood changes. During the aura stage, I get allodynia and occasionally tinnitus and visual hallucinations. Unfortunately, I cannot use these as signs of a migraine and pretreat myself, because I get these symptoms very frequently and at least 50% of the time, I don't get a migraine.  I would be using up precious medications treating nothing half the time. 

I get a range of symptoms during the headache phase, including moderate to severe head pain, made worse by physical activity, nausea/vomiting, neck pain, photophobia, phonophobia, osmophobia, dizziness, confusion, and eye pain. My migraine symptoms during the headache phase can range from one or two of these things, to ALL of these things.

During postdrome, I have everything listed - fatigue, brain fog, and depressed mood.  These usually last a few days.


Sleep

Sleep is a precious commodity when I have a headache or migraine, especially when I'm stuck in a cycle like I am right now. It is currently 3:37 am, and here I am, writing a blog post instead of getting the sleep I know my body needs.  Why am I awake, then?

1. Medication side effects - currently I am suffering from heart burn, a side effect of Naproxen.
2. Insomnia - I've been sleeping so much during the day, that I can't always sleep through the night properly.
3. Head pain - sometimes my head hurts so much that it wakes me from sleep and keeps me awake.

The unfortunate thing is, there isn't much I can do about it. Sure, I could take medicine for the heart burn. It might not work though. And sure, I could try not sleeping during the day. But when you're taking multiple medicines that all cause drowsiness, staying awake isn't always an option, no matter how hard you try. And as for the head pain, if anyone has an idea how to fix that so I can sleep, I would love you forever.

I did, in fact, take medicine for the heart burn and I'm waiting for it to kick in. But there's nothing I can do about the insomnia and head pain. So instead, I do my best to distract myself, hoping that, with time, I will fall asleep again. 

I sincerely hope that everyone else stuck with a headache or migraine or any kind of pain is getting a good nights sleep tonight. They say misery loves company, but, in this case, that's definitely not true. I wouldn't wish my problems on anyone, and I think most people with any type of chronic pain would agree. Not to say there aren't times when I think, "If only they knew what it was like" about someone. Who doesn't? But I truly wouldn't wish this on my worst enemy. Because even though I can find humor in my life, it also takes a great deal of strength to persevere, strength that I'm not even sure I have sometimes. But I always manage to find it somewhere, whether by myself, or from the support of my family and friends. And I will continue to do so.

It is now 3:56 am, and I'm still awake. 

I think my heartburn is gone, though!  Here's to small victories!