Migraine While Traveling

So yesterday I was out of state working and I had the time of my life. My job was called "The Energizer" which meant I got to dance around and get everyone pumped. Believe me, I'm very good at my job. Toward the end of the night I felt it: the spidey sense. I knew a bad migraine was coming. I even warned the masses of the upcoming storm.

So I drove to my very dirty motel. On the way, I experienced the most excruciating pain that I had such a difficult time driving. People kept honking, flashing their brights, and riding my bumper. It was raining as well, by the way. Perfect weather for angry drivers to put me more into harms way.

Well I finally got to the motel room and I had hardly any energy left. I was grasping the last spoon so tight it hurt more. I checked in and walked into my room. The door barely locked but I had no energy left to go to the front desk and ask for a more secure room (dumb). The bed sheets had cigarette burns and spots of blood (seriously run for the hills). So what did I do? I curled up in the fetal position on top of the bed and didn't move. I had zero energy for crying, screaming, or anything but lying still. I rubbed my temples, silently prayed, and debated calling 911. After two hours, I finally got the pain level lowered so I could sleep. 

So the moral to the story is...be safe. Migraine hurts but don't be stupid. I should have went to the hospital and properly got treatment. Be careful out there, spoonies!

Migraine Hell

So I've been a busy bee lately! This week I was in a commercial, and two new tv series. I was just an extra in an episode for both but the experiences and networking opportunities were great. 

So a couple weeks ago, I made a bold decision to bring one of my writings to life. I wrote a short comedic screenplay about the frustrations of migraines. I presented it to some friends in the film business and they loved it! 

Being the aggressive passionate person that I am, I started a social media following and we will have our first pre production meeting this week. It's going to be low budget and out of my pocket but the message will be amazing. It will give spoonies a bit of relief and hopefully a laugh. 

We start filming in January after the holidays are done so we have time to raise funds, do promotion, and build a hype. In this experience, I build my media company (I use it for self publishing too) for more than just writing. 

Also after the holidays, I'd like to go into part time work where I currently am and focus more on my art. In order to do that, I need to start finding ways to make money doing my art. 

My first full length fiction novel will be set to release in the fall and I have a romantic comedy screenplay started. I finished a feature film that's a thriller but the budget will be bigger than expected. So I need to build up investors, profit, and capital in order to start it.

My dreams are set in motion. I'm going to be bringing my musical dreams to life soon as well. I can do it all! I can be happy! I can achieve my dreams! 

The Eyes Have It

Now that I have insurance again, I have begun the new doctor searches and appointments. This morning I went to the eye doctor because well....it was way overdue. They offered a service to take 3D photos of your eyes to see if there are any issues. They say the eyes are the windows to the soul...

Well mine needs a closer look. When looking at my optic nerve, both eyes showed a thinning near my optic nerve. After explaining my B12 deficiency, the doctor quickly wrote it down and asked me questions about it. Since I don't know how long I was severely deficient in the B, I have no idea how much damage was caused. So we're doing a vision field test in a couple weeks.

Damn, I thought the eye doctor was going to be an easy visit! Such is the life of a spoonie. Moral to the visit: take the time to do these extra tests. You never know what you'll find. This one only cost me $39 and was paid with my flex plan. Crossing fingers and toes for positive results or an easy solution. Anyone else have this issue?

My Mascot

Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

I am a chronic migraineur, have a vitamin B & D deficiency, allergies, carpal tunnel, and parasthesias. Most of the time I feel like a broken doll but I don't want that to be my mascot. 

I'd rather my mascot be a teddy bear with a bandage on its head. The reason would be because I'm not a perfect teddy bear straight from the manufacturer. I'm rather a teddy bear with boo-boos, mostly on its head. At first you think, "awe how cute," but then you realize he needs help. He represents what many spoonies feel on the inside but are afraid to show. His battle cry would be, "I'm okay!" He constantly reassures others and doesn't feel sorry for himself. He stays smiling even with the bandages because he knows it's all going to be okay.

What about you?

A Spoonie's Slump

Today has been a big challenge. I woke up in intense pain and my whole body felt like it was on strike. Not only did I have my usual migraine, but my arms and legs were so sore as if I ran and did jumping jacks in  my sleep. Still not ruling that out as a possibility :)

So I thought of going to a doctor. The ones I called said, without insurance, I'd be paying a minimum of $75 and it's due at time of service. Since I'm seeking assistance for migraine, the price went up. Since my account is significantly less than that, I decided to stay home and "tough it out." Unfortunately, this is the first time I've decided to decline medical help. So I began the process of applying for health care assistance. The problem: I do not have children. It's very difficult to get any assistance no matter how much you make (and I'm definitely in the poverty level) unless you have mouths to feed. I have chosen not to have children at this time because I cannot properly provide a fulfilling life while I'm sick. I'd hate to put a child through that.

The other day I applied for the Affordable Health Care program from http://www.healthcare.gov and each plan was half my month's pay. I couldn't believe it! When I chatted with a representative, she said I could appeal. I'd hate to have to get a second job just to afford health care because I'm already working as much as I physically can. Working more would only trigger more attacks, which would cause me to go to the doctor more. Not a smart idea.

So what is a spoonie to do? My solution is to keep applying to programs for assistance, making appeals, and stating my case so I can get the care I need. I'm not looking for handouts, I just want to be able to afford a reasonable amount of care. Stay tuned for more.

What have you done when you couldn't get help that you needed?

Attack of the Brain: Revenge of the Migraine

Yesterday I had a bad situation: My pain level was at 12, insurance ended the day before, and I was in no financial situation to see a doctor. I debated going to Urgent Care, the least expensive option. The other part was I was eligible for COBRA but haven't had any information to activate it.

So what is a spoonie to do? I chose to sleep as long as I could. Once my parents got home,  if my pain level was still above 10,  I would be taken to Urgent Care. Thankfully, the pain lowered to a range of 5-7 which is manageable for me. How sad is that?

If a completely normal, healthy person borrowed my body for a day, they'd think they were dying. My body is used to constant pain so I only react to the top pain levels. As I'm typing, I'm at a 4. Stiff back of the neck and mild headache.  This is my daily battle.

My next thought was disability. I feel like I'm not worthy of it since I'm able to walk and have good days. However, I cannot work a full time job anymore. How will I support myself if I can't work like a normal person? So the long process begins. Will I be approved? I'm not sure, but I've got to try.

Any spoonies have days like me? How do you cope?

The Unemployed Workaholic Spoonie

So now that I'm all settled into Tampa, the job hunt begins! My biggest concern through the whole process is I am afraid to start a job and then have to leave due to migraine. This rainy season hasn't helped me much! Unfortunately, I do not sell enough books to do that full-time (but one can dream), so I need to find something. Here's my tips for the job hunting process as a spoonie:

1. Knock on doors - I went to the mall the other day (since it's holiday hiring time) and just went door to door asking for openings and applications. Most said you fill out applications online, but one in particular let me fill out an application, talk to the manager, and schedule an interview the next day! Being persistent (and owning half a wardrobe from the store) helps. My first interview went well and I have  second one today.

2. Don't be afraid - It's tough to go through what we do, so don't get discouraged if your phone isn't ringing off the hook. In my case, I am applying for jobs in finance and retail. I haven't had too many phone calls, but this job market is super competitive. There's always going to be someone with more experience/education trying to get the same job as you.

3. It's up to you to disclose your illness - I have been open and honest in my interviews because I'd hate for there to be problems when I start work. Does this hurt me? It might, but at least I'm keeping my integrity. You never know, your future employer might admire you more for working under such conditions. I had asked about flexible scheduling since I never know when a migraine is going to hit me, and my body tires quickly.

4. Try something new - I recently started auditioning for acting opportunities. I am a very expressive and creative soul, so I figured this would be up my alley. Unfortunately, they don't pay you millions of dollars to start with (who knew?!), so taking classes, doing free work, and networking are in order. In the mean time, I need a paying job to support my income and pay my debts.

5. Follow up - It's been my experience as a job seeker and a manager seeking employees that friendly follow-ups after an interview (typically a day or two after) are a great idea. It lets the manager know you're serious about wanting to work with them and you have a good work etiquette. Try not to sound desperate though (it's like a date). You want them to want you.

6. Just keep swimming - Like Dory says, "just keep swimming!" Don't give up because you haven't found anything within your first month. Try temp agencies, make friends, and gain local references to help you.

Let me know your experience with the job hunt as a spoonie. Or if you're employed and seeking new employment, what have been your experiences?

The Cycle of a Spoonie

Today has been a typical spoonie day. Let me explain:

1. Wake up with sore muscles and have to take an extra half hour to hour to fully get up.
2. Try to save as many spoons while getting ready. Put your mask on, get it together, and head out.
3. The commute brings a migraine due to the sounds, lights, and frustration.
4. Once you get to work, you stretch to keep trying to get your sore muscles to wake up.
5. During with you do as much as you can to not trigger a migraine. You take breaks, turn away from the computer, and take walks to keep the leg muscles warm.
6. That 3:00 sugar low hits and you sneak a snack to keep from another migraine.
7. At the end of the day, you're grumpy, sore, and ready for a nap.
8. You get home and soak in the tub to relax and have dinner based on your pain level.
9. Time for bed. It's 8 pm but you don't care.

It's a catch 22: you sleep to reduce pain then get sore from too much sleep. Where's the median?

Back to Reality - and it SUCKS!

Well, vacation is done and over with. I had a great time visiting with family, not having a care in the world, and being free of any stressor.

Now I'm back and the woes I had when I left are still here. Did I think they would magically disappear? This week has already been challenging thanks to some body aches (weather & hormone triggers) and migraine. I had to cancel my MRI yesterday because I physically could not get out of bed. Tomorrow is my GI consult so hopefully we can do some testing in that area to see what's going on with my body not absorbing essential vitamins.

The other day, I saw a person follow me on Twitter that claimed he "cures" migraines. Sorry, but last I knew, there is no cure. Unless there's some new scientific breakthrough that the spoonie community doesn't know about, then I'm not buying it. I see so many products and even a smoothie that claims to "cure" migraine. If there was a real cure, it'd be extremely expensive, not something you could get at a drug store.

Okay I need to stop ranting. Can you tell I'm in a poor mood today? :)

This week I'm working on the format of my next writing project. It's a guide to the headache diet I keep blabbing about and I think it'll be a good resource to those who want to eat cleaner and reduce migraine dietary triggers. I'm working very hard on it and hope to have it out in print and digital (yes, I'm doing both this time) by the fall. I'm trying not to work on multiple projects at one time because that will slow down my goals. So once this one is out, I have my next one to do! I'm a busy bee but I definitely have been taking proper breaks for rest/relaxation.

I'm an Electronic Device

It seems we have many ways to express what's going on with our bodies. A common way is to share The Spoon Theory (such a great reference). For me, I find that I lose spoons and gain one or two when I sleep, or recharge my batteries. Check this out:

In the morning, it takes me several snoozes too finally get up. I'm rebooting for the day as a computer would. When getting out of bed, I need to wait a couple more seconds because I'm not quite fully running yet. My body does a check to get all programs running. After the morning bathroom trip, breakfast, and taking the dog out,  I am mentally and physically booted to put my mask on. Just like a cell phone cover, it fits like a glove (though some days I have to squeeze a little more lol). My face, hair, and attire make me appear normal though my hardware underneath says otherwise.

During the commute, I'm catching up on news and music, which can be looked at as downloading updates to software. I finally reach my cubicle and the real work begins.

Throughout the day, I need small breaks just like your computer freezes up when you're doing too much at one time. Some parts of my system need to stop working to focus on another. Too much work at one time can crash an entire system. So take it easy, spoonie. Your system is more vulnerable than others.

In the afternoon, My battery always seems pretty low. I assume it's blood sugar so I have a snack and take a breather. There are some days when it seems you've contracted a complicated virus and need to go home to repair and reboot. There are days when you know what caused the virus and others that leave you clueless.

Bottom line: you know your own machine better than anyone else. So keep that anti virus up to date (doctor check ups and treatments) and know when to repair and reboot.

Meds meds meds

I'm going to do a remix of the popular 90's hit "Bills, Bills, Bills" by Destiny's Child.

Can you fill my meds
Can you fill my nausea med
Can you fill my pain med
Then maybe the pain will leave my head.
I don't think you believe
That my pain is killing me.

Today was a very upsetting day because not only did I have a severe migraine, but my while body was so achy! My arms felt like I did 1500 pushups and my legs acted like I ran a marathon! I went to my walk in urgent care clinic and no one could see me immediately. They recommended I go to the emergency room. When I got there, they put me in a quiet, dark room. Thank goodness! The psychic on tv in the waiting room was driving me bananas!

They were pretty busy so it took a little bit to be seen. No big deal, I was resting so I didn't notice.

In pops a med student. He explains he's working with the doctor and is doing an assessment. No big deal. He then says (and I quote), "so I hear you have a headache?" Without skipping a beat, I growled with an evil eye and said, "migraine." Sure enough he corrected himself a lot throughout the assessment when he said headache.

At the end of the assessment he then says, "did you try Tylenol?" Steam came from my ears. I said (as calm as I could), "Tylenol is like a sugar pill. It does nothing for me." He thought that was so interesting and I doubt he believed me. He probably was testing me to see if I'd ask for a narcotic.

The nurse came in to administer my IV. Being anemic, My veins play hide and seek. They used to be a nurse's dream. Oh so painful! The medication itself burned like my Botox injections and rushes through my body. I kept thinking, "man I hope this works." Oh the things we do to reduce pain!

The nurse left and after a while I felt a sensation in my right leg that caused it to jump/twitch every other minute. That freaked me out. I pushed my call button and the other nurse was stumped.

Not long later, the doc came in to explain his treatment. He also gave me a "I don't prescribe narcotics" lecture and I immediately said, "good because I don't want them." I'd rather have medications that keep me active but reduce the pain than be knocked out and dopey.

Finally I got discharged and went home for a nap.  Woke up in time to see Danielle Bradbury win The Voice. Now my legs are killing me again! Got my prescriptions filled and ready to call it a night. Can I get a free pass tomorrow and have a low grade pain day? One can hope.