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Summer Update

Hey all! As you may or may not have noticed, I’ve been taking a break from blogging for most of the summer. In about two weeks the fall semester starts up and I’m excited to get going with my classes. So here’s a recap of my summer:

MAY

  • Finished spring semester.34859953_10155858655286785_2505407728319463424_o
  • GI appointment- started taking acid-reducing meds and stopped taking all NSAIDs on the assumption my abdominal pain= peptic ulcers.
  • Neurology appointment – talked about trying new migraine drug Aimovig when Dr. L get access, follow up in August for that purpose.
  • First appointment with Urologist because of frequent UTIs.
  • Got job as freelance transcriptionist with Rev. Started doing that.
  • Also got job as freelance copywriter, started doing that as work is available.
  • Went kayaking for the first time!

JUNE

  • Working and stuff.

    IMG_2455

    We did forget to wear our Gandalf costumes though… Next time.

  • Turned 23 (I know, I know, I look like I’m 18 still).
  • Got a sinus infection that took 5 weeks of antibiotics + 1 week of steroids to clear up.
  • Went horseback riding for the first time! What?! It was awesome and it turns out
    I’m not even allergic to horses!
  • Cystoscopy. Umm, yeah not fun, but not as bad as I worked it up to be. Of course everything looked fine so back to square one (no idea) on the UTIs.

JULY

  • Working and stuff.
  • Yeah not too much to report from July.

AUGUST

  • Came to the parental’s for a couple weeks.
  • Appointment with Dr. C (allergist/immunologist). Because of Dr. C and his staff’s tireless efforts and benevolent harassment of Aetna personnel, I got approved to switch to Cuvitru! (I did a free trial of Cuvitru in April and I tolerate it much better than Gamunex)
  • First shipment of Cuvitru, first Cuvitru infusion. No more 3-hour infusions! No more infusion hang-overs and migraines! Woot woot. I really love Cuvitru if you can’t tell.
  • Appt. with Dr. L (neuro) again- got ball rolling to start Aimovig. It’ll probably be 2-6 weeks before I get to start and then it takes 1-3 months to see full effects, but I’m excited to try it!
  • Watched a bit of my little bro’s JV football scrimmage – he scored 3 touchdowns, like a beast, but only after we’d left of course.
  • Next week: get to move into new place at school.
  • Two weeks: fall semester starts!

 

So yeah there’s my summer in a nutshell. It’s been good. Not the most exciting summer, but good. I’ve especially enjoyed working as a freelancer – remote work where I choose my own hours has been so awesome and allowed me to work over the summer for the first time ever!

My tummy is doing better, but after three months I’m still having to take acid-suppression meds morning and night, and stay away from all NSAIDs. Thankfully, I have found some natural remedies that help a ton. I’ll write about those next time maybe.

Hope your summer is going well!

Migraine Crash Kit

Happy New Year! I feel like I’m expected to write like “a year in review” kind of post today, but I’m not feelin it. Instead I’m gunna talk about migraines; migraines are on my mind as I just emerged from a nasty 72 hour period of  head-crunching, world-spinning, face-tingling, and vampire-like aversion to light and noise.

The tricky thing about migraines is that they can happen anytime, anywhere. You could be in the car, at work or school, at the store, on a date, eating out with friends—and boom—a migraine can just come out of nowhere. Because of this a lot of people with migraines find it useful to have a crash kit that they take with them whenever they go out. In addition it’s always important to have a more extensive kit to fall back on at home. What goes in such a kit will vary greatly as no two migraneurs are the same. Here’s what I keep in mine.

On-the-Go Crash Kit: (keep one in purse, one in backpack- have with me at all times when I leave the house)

  • Triptans (Frova works best for me personally)55A7D547-E9B8-444B-A7E2-A9D7F8DE5B1C
  • Aspirin/Ibuprofen
  • Benadryl
  • Anti-nausea meds (I use Zofran)
  • Water bottle
  • Ginger Tummy Drops
  • Protein Bar

 

At Home Kit:

  • Sports drink (I prefer low cal Gatorade)
  • Excedrin
  • A longer working NSAID like Aleve
  • Ginger Ale
  • Icy Hot (for shoulders and neck)
  • Peppermint oil (temples)
  • Steamer (sinus/face pain and congestion comes along with my migraines)
  • Higher caffeine content Kombucha
  • Foods for upset stomach (crackers, bread, applesauce, etc)
  • Stronger pain killers (only if it won’t break with normal stuff)
  • Ice pack
  • Heating pad
  • Dark, quiet room to lie down in
  • My tablet to listen to an audio book or familiar tv show (or watch once my eyes can take it)
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  • And of course everything in my on-the-go kit as well

 

 

What do you keep in your crash kit?

16 Again: Chronic Migraine Diagnosis as a Teen

Migraines in kids and teens are more common than you think, but they rarely look like they do in adults. I started having migraines when I was 16 and it took a while for them to figure out what was going on. What’s more, a lot of the drugs used to treat and prevent migraines in adults aren’t considered safe for children and adolescents, so treatment options are limited.

I can’t remember exactly how or when my migraines started. I just remember, somewhere in the fall of my junior year of high school, suddenly becoming a walking headache. I also started having severe insomnia, which only fed my migraines. At the time I was seeing an orthopedic specialist at CHKD for a back injury, and I mentioned once to him about my head hurting all the time. After ruling out a concussion, I was sent to a pediatric neurologist.

After a thorough evaluation by the ped neuro, I was sent home with a diagnosis of chronic migraine and a script for Topomax, as well as something to help me sleep. When the doc first said “migraine” I thought he was off his rocker. My head hurt, yes. It hurt bad. It hurt bad all the time. But I always thought a migraine could only be an unbearably painful headache that came along with nausea, vomiting and dizziness. I thought he must be wrong–my headaches are bad but they aren’t that bad.

Well I started Topomax as the doc instructed. It helped my headaches but it was a steep price to pay. I was always so sleepy and struggled to keep my head up in class. I started having a hard time with concentration and memory that I had never had before. My grades dropped. My bones became more brittle and I repeatedly broke fingers playing basketball. I even had kidney stones once. At the time I had no idea that Topomax was causing all of these problems; I was on it for nearly two years. When I came off of it because my headaches were doing better, it was like coming inside after being out in the dark for hours. I hadn’t even realized how miserable I was, or what was causing that misery, until I was able to step away from it.

After I realized what Topomax had been doing to me, I was super mad at the doc for putting me on it in the first place, but now I understand why he did. There are so very, very few drug options that are considered safe for those under 18 to use. The meds I’m on now for my migraines, for example–none of them are approved for use in under-eighteens. Still, there are treatment options available, and when all’s said and done I think being on something like Topomax is much better than getting no help at all.

To help us better understand the types of migraines and similar headache disorders found in children, their symptoms and their treatment options, the Diamond Headache Clinic has made this neat presentation and been kind enough to share:

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Diamond Headache Clinic

The Unpredictability of Chronic Illness

Yesterday was a pretty good example of how unpredictable life can be when dealing with chronic illness. I expected my Monday to go as follows:

  1. Get hand lump cut off by Hot Doctor
  2. Get allergy shot with mother
  3. Come home and write a post about getting hand lump cut off
  4. Do some chores
  5. Go to gym

Instead, my morning started off with a call from Hot Doctor explaining how he had consulted with a dermatologist and they decided it would be better for me to get my skin lesion cut off by a skin specialist. He said they decided this because of the size, location and the fact that they don’t know what it is so they want to get the whole thing to send off to pathology. So my procedure was cancelled and I must now await the dermatologist’s office to call and schedule me. I appreciate Hot Doctor taking the time to consult with other doctors and what not, but honestly it’s not that big of a deal to me–somebody just cut the thing off!

After an unexpectedly free morning my mom and I headed to the allergist’s to get our allergy shots. It was our first time getting shots together; mom has been doing them for several years already. She was very excited to be “shot buddies.” I mean we were very excited… I’m afraid I was a disappointing shot buddy though as I was rather too focused on finishing Wuthering Heights to talk much (I finished it–it’s not my favorite).

Since we had more time than expected, we were able to stop by Barnes & Noble after our shots to use our birthday gift cards from June. I was very excited to move on to less depressing literature.

After a quick hour agonizing over whether to get Lilac Girls or a collection of all Hemingway’s books (on my part at least) we headed home. I started my chores, but only got to the part of destruction before most of the actual cleaning and organizing takes place when all the sudden I started feeling weird–tired, dizzy, tingly, kinda sick to my stomach. A few minutes later it became clear what was happening–a massive migraine had come swinging out of nowhere to one-hit-KO me. A productive evening of cleaning and working out flew out the window. Instead I spent the rest of the day dealing with my petulant head.

Like I said, my wayward Monday is a good example of why making plans with chronic illness is kind of a joke. It’s like a child pretending to drive from the backseat–they can turn their make-believe wheel all they want but they have no actual control over where they go; I can sign up to do this or commit to do that but in the end I have no control over whether I’ll be able to keep those commitments–my body is in the driver’s seat. Chronic illness laughs at plans and any pretense of control or predictability. That’s just how it is.

And it’s not such a bad thing really. Sure, it makes going to school, having a job, and even having a social life pretty near impossible sometimes (sometimes actually impossible). But it has also taught me not to worry so much about the future–thanks to my illness I’m learning to take life one day at a time, do my best with the time I’ve been given, and then trust the rest to a loving Heavenly Father. That’s not so bad really.