Botox #2

Botox round two was yesterday! Afterwards- I made it to the local Target, felt nauseous and decided to stay a while until it let up a little. Thankfully I was able to make the 1.5 hour drive home with no problems! I was somewhat cautious when I got home because the first time I was very ill for the rest of the day- but I was able to get some homework and housework done before tiring out. 

Today I woke up with a monster of a migraine. I had made much anticipated plans with a good friend of mine and decided I was going to IM some torridol and Reglan and suck it up. Made it through the day with her (and very glad I did) but I'm thinking I'll be chilling on the couch and watching the Buckeyes play some football tonight in a less than excitable manner. 

I still have my PICCles (or PICC line) for the time being as there may be an immediate need for an IV Infusion before the Botox does it's magic. I was happy with the results from my first Botox so I am ecstatic about the possibilities with the second dose! 

I downloaded a blogger app to my phone so I hope to continue more informal fun updates like this is the future!

Breaking the Stigma of Chronic Pain…Slowly

Meet one of the newest loves of my life...Rocko...aka Rocket!

So today I had a follow up appointment with my neurologist. I had a number of things I wanted to talk to her about, and get her opinion on. The biggest thing that I have been struggling with (aside from the neuro systems and pain) has been extreme tiredness and generalized fatigue.  My depression scale today was a 17 (compared to last month a 13).  Mood-wise I feel much better, but my neurologist believes that my extreme fatigue is a result of my depression.

I know..I can’t believe I admitted it – I’m suffering from depression. It’s such a stigma – that I could simply cheer up and “be better”.  I suffer from depression as a result of my chronic illness. The migraines that have taken over my life, are now also taking over my mood, emotion, and inner motivational drive. I force myself up, I manage through the day, come home exhausted, and start over again. My mind moves a mile a minute with things I want to accomplish, but my body says no.

The stigma that depression is just something that can be fixed isn’t true. Just like migraines its different for each person, complicated by medications, dosage, constant changes to said medications and a battle of try and see if it works.

I have been fortunate that the Botox treatment I received June 13^th seems to have reduced my overall migraines by almost 50% - but unfortunately it has not helped the severity or most of the nero symptoms that go along with it. My neurologist also prescribed me some medication to help with the fatigue, and we are working on a dietician that can help work with my GERD and IBS in a way that avoid triggers and helps me feel better.  I feel blessed to have those few days back into my life, and hopeful that I can keep improving and fighting against it!

While depression may seem like a dirty little word, or something that should remain unspoken – please remember, as the commercial says “depression hurts”. My addition is, please do not allow your loved ones to suffer, and most of all….support them. There are many of us who are not drug seekers, not attention-seekers - but ordinary people put into extraordinary circumstances. We want to feel normal, we want our migraines to go away, and we want to enjoy life to the fullest – join us in the fight!

Post Botox Treatment

Well it has been a little over a month since I have received my Botox treatment! The first few weeks were a little rough as my body adjusted (body aches in example). However, after about 6-7 regular to above regular pain days I thought for sure this was never going to work and prepared my arsenal in hope of better days ahead. After  the first week I slowly started to notice that my migraines were less frequent and less intense!

I have also been working hard to maintain my diet, exercise, and level of stress. July 4-9^th I had the biggest test so far of my treatment. 240 people, 5 days, 4-H Camp! I took all the possible supplies I might need, and prayed hard that I would not need them. Through rain, a little thunder, and humidity my health was trialed, but I survived without a large migraine or more than a little loss of function.

My job is often high-demanding this time of year with camp, and then followed directly by our judging for 4-H projects. I was delighted to find that I wasn’t plagued with migraines, but just a post camp sinus infection and double ear infection. Since then I have been feeling “slower” than normal, but my pain is limited. I feel like I’m beginning to see what it might be like to have my life back!

I was able to help raise a little over $200.00 for the CMA group. I felt accomplished sending that check to them! I’m hoping to find more ways to support the CMA group and help document my journey through migraine treatments.

I am somewhat anxious about how It will be as the Botox wears off before my next treatment. I’ll be sure to continue documenting my journey on here and with the others from the CMA group. 

I Recieved Botox at the Age of 27

I often feel like I have been through all the medicines known to man-kind when it comes to managing my migraines. I have tried preventatives (before the migraine starts), abortives (after the migraine starts) and medicines that aren't even initially promoted as migraine drug originally!

Many of the medicines I have take make me tired, sleepy, foggy and affect my system as a whole. I don't like the way that I feel, but I keep trying the medicines that my neurologist suggests. So my neurologist suggested that I try Botox. 

So how does the Botox work? I found this small snippet from this website that explains it better than I ever could! "BOTOX® blocks chemical changes on nerve endings. To treat chronic migraine, BOTOX® is injected into muscles of the forehead, the side and back of the head, and the neck and shoulders to produce a partial and temporary chemical “denervation” of the muscle. This causes the muscles to be too weak to contract. The dosage used to treat chronic migraine is very low since the muscles injected are small." 

The side effects are minimal, the treatment has little effect on my body (other than an inability to raise my eyebrows quite the same) and it literally took 5 minutes for them to inject my head. So what is the catch? The road to get there, through the insurance company had to have a whole lot of information in order to approve converage (it is approved for migraines through the FDA). 

1. I needed to have chronic migraines. Meaning that I have to have 15 or more migraines a month. 

2. I needed to fail 3 or more preventative medicines from at least 2 classes (the three being antidepressent, seizure medicine, or blood pressure medicine). 

1. I definitely have chronic migraines. I suffer from 18 or more a month. 

2. I have failed a number of preventative medicines. Just to name a few, (topimax, inderol, verapamil, cymbalta...). In fact, I often tease that I can give lots of information about any of those drug because I am  very much so one that needs to know about what is going into my body. 

On Friday, I sat in my neurologists office and for the first time I left feeling happy (a little stingy-feeling also) that maybe for the first time since I was 12 years of age I may have the start of a handle on this whole migraine thing. I say it in the office with my hands clasped rightly, concerned about the amount of pain I was about to endure. I had read conflicting reports, and in turn decided to stop reading and just go for it. It was fairly painless, although I will admit the most pain came from the temple of the forehead. Afterwards - it seems to be that my biggest change has been an complete inability to furrow my brow. Slightly amusing, I just hope I don't need to be mad at anyone in the future.

I came home from the procedure, slept for about 7 hours and then a full night following afterwards. I did have some minor flu-like symptoms (normal for the first 24-36 hours) - and one really crappy migraine the following morning - but today has been wonderful, with little pain, and an ability to enjoy the sunshine on my drive instead of hiding from it!

I will try to update more as I go through this process. They say 1 week I will notice positive changes, and 4-6 weeks until it is steady and working well. The best news is, I only need the procedure 4 times a year! and within a year I could have a 90% reduction of migraines! -- here's the being healthy, working hard, and maintaining a lifestyle that is most positive for my migraines. 

My Journey through Pain, but not Alone

Since the age of 12 I have struggled with migraines. Through my adolescence and early adulthood they have morphed and changed. From the beginning I struggled with that woozy feeling and then a splitting headache. I would trudge through the pain trying to go to school, play in sports and combat my homework, often giving in the pain and nausea before the nights end. Today, a migraine is much more complex, with an debilitating aura, neurological symptoms, and pain that is so intolerable that I often resort to emergency medical care.  The journey through my migraines has become one of awareness and one that has helped me build a strong relationship with my own Mother, who has struggled with migraines her entire life also.

My Mother has always been there to help with a cold compress, soothing words and advice. When my migraines started becoming much more serious here in the past two years she was the first to help me with vitamins, trigger searches, and most of all the support that I was not alone.

For many, a migraine is something that they will never experience, or only experience one or two times in their life. I often envy those who can say they don’t understand my pain. I keep an optimistic outlook that one of the many (and I mean many) medications will work, or that maybe these migraines will “suddenly” retreat never to be seen again. Those who surround me closest are my biggest fans, but those who simply do not understand are often my worst enemies. The feeling of not knowing what might happen from day to day (or how I will feel, or when a migraine will set in) is like a veil – a horrible dark veil that encases me in a little bit of trepidation.

As many migraine sufferers have expressed, we see a variety of responses to our illness. Often it is a look of disbelief that we cannot “simply work through the pain” but worse yet are those who don’t understand the neurological symptoms that take over and stop me in my tracks.

I am optimistic that I can find a solution, a cure for my migraines. I do not wish to be pitied, or to be pushed off to the side as someone who simply has a disability.   I know that I am strong, able and most of all a bit feisty.  As someone in the education field, I feel that it only natural that I express, educate and collaborate to make things better for myself, and others who suffer from the pain. Most of all I hope to see the day when my own Mother and I can lead a life, not having to worry about the next migraine attack.

Without the help of my Mother, I would be completely lost in a sea of information from neurologists, ear, nose and throat specialists and that information that I have read and gained through my own careful research. She has helped me through her own experiences and together we hope that one day we can find a cure for the invisible illness that we both struggle so much with. 

2013 New Years Resolutions

Instead of just simply listing my goals, I want to also list some ideas I have for how to make myself accomplish them, and what I can do to build on them. I hope this helps me to see that I am making progress and keeping up with them through the year, and keeps me motivated!

""Let our New Year's resolution be this: we will be there for one another as fellow members of humanity, in the finest sense of the word."

-- Goran Persson" 

1. Goal Weight: 170lbs
-Continue with weight watchers.
-Goal of 1-2lbs a week 
-Exercise 3 times a week
-Practice cleaner eating and eliminate fast food eating (especially during lunches)

2. Learn more about my migraines and help others understand them.
-Read articles from migraine.com at least 3-5 times week
-Choose one book a month to read about migraines.
-Continue blogging articles for migraine.com to share my knowledge about my own experiences with migraines.
- Share knowledge with people around me about my experiences to help them understand the difference between headaches and migraines. 

3. Be more crafty!
-Choose more projects from pinterest (1-2 a month) and actually complete them!
-Craft with family and friends!
-Use crafting to decorate!
-Use crafting as a way to decompress from studying and work.

4. Decorate my office to make it more comfortable (I do spend 40+ hours a week there after all).
-Purchase new lighting for when the florescent is too much for my migraines.
- Buy new shades for my windows.
- Paint the walls of my office.
- Find/Make new inspirational wall hangings.

5. Complete web and graphic design projects in an orderly fashion.
- Make a "To Accomplish" listing.
- Prioritize and figure out what needs done.
- Price listing for services provided.
-Online store for sales to the public with generalized graphics for sale.

6. Run 2 5K's this year.
-Choose races.
-Start reconstructive training for post broken foot.
-Training for 5K.
-Set Goals.

7. Organize my apartment
- Financial paperwork organized and sorted.
- Manuals, warranties and car information sorted.
- Medical, medications, insurance information organized.
- Pantry restocked, sorted and inventoried.
- Craft supplies organized.
- Holiday decorations cleaned and put away.
- Clothing sorted and organized (including new donations and determining anything new that may need to be replaced in the future).

8. Family time and personal goals!
- Start a birthday list and ensure that family and close friends all get a birthday card in the mail this year :)
- Make sure to call Grandparents once a week, and visit once a month.
- Keep a fairly consistent sleep schedule Mon-Thurs
- Make time to keep and always be building the relationship I have with my boyfriend!
- Take 15 minutes every day to do something for myself at the end of the day before I go to bed regardless of how late it is, or how tired I am (like read a book, explore pinterest, read twitter, or color).