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My Top Ten Tips for Tummy Troubles

Intestinal cramps, gas pain, constipation, diarrhea, nausea, indigestion, heart burn, bloating… The list of ways your digestive system can cause you discomfort goes on and on and on, and pretty much everybody suffers under an unhappy digestive system at one point or another. As one who has racked up some serious frequent flier miles at the GI’s office over the last few years, I have learned a lot of insider tricks that I wish I would have known from the start–they would have saved me some serious misery. So here’s to hoping I can at least help some of you when the occasional (or not so occasional) digestive woes hit.

  1. Ginger, Ginger, Ginger!
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Not that kind of ginger Ron, don’t worry

A couple of years ago I sustained some serious nerve damage in my digestive track from an infection that left me with “mild” gastroparesis and constant, crushing nausea amongst other things. I found ginger seriously helps with the nausea. Fresh ginger is best–I like to heat up water and put some cut up ginger in it. Let it soak, add a little honey and then sip til your tummy is happy again. Ginger Ale is also good, but make sure you get the kind with real ginger in it. You can also get ginger “candy”–I like Gin Gins Ginger Chews–but those are pretty spicy so I wouldn’t use them when your stomach  is seriously upset. They are awesome for motion sickness though. Really ginger is just all around a life saver when that sick feeling hits your stomach.

2. Peppermint Oil

Guess what else happens when you have nerve damage to your digestive track–cramps! Horrible, wrenching, gut-twisting cramps that leave you gasping in agony. Seriously, some of the worst pain I have ever experienced was from intestinal cramps. Luckily I eventually found peppermint oil, and we are very happy together. Nothing–no prescription or OTC meds–cut the cramps like peppermint oil does. It also helps with relieving gas, nausea and diarrhea. When I start getting that tugging feeling in my intestines I rub 3-5 drops of peppermint oil into my entire stomach area, moving my hand in a clockwise circle. Every essential oil I have ever bought says not to apply it directly to the skin, but to use a carrier like coconut oil–I have never not ignored that and so far I have lived. If you have super sensitive skin though, you might want to heed their warning and try it with a carrier oil first.

3. Probiotics 

This is an especially important one if you ever find yourself needing a course of antibiotics; before I learned about probiotics I would get really bad diarrhea whenever I was on antibiotics (which was almost constantly before I got diagnosed with PI). This is because antibiotics, in addition to killing the bad, infection-causing bacteria, wipe out the   good bacteria in your intestines. Probiotics help replenish these good bacteria so you can digest your food properly. Even outside of antibiotic use, probiotics are helpful for promoting proper digestion and boosting your immune system–70-80% of which is in your gut. I take a probiotic supplement everyday, and if I’m on antibiotics I double or triple my normal dose. Unfortunately probiotics can be pricey, but you don’t need the crazy expensive kind to see benefits–just be wary of super cheap supplements with a low cell count and only one type of organism. I stick with middle of the road supplements like Accuflora and Phillip’s Colon Health. Supplement this with probiotic rich Kefir and/or Kombucha and you’ll be on your way to a happy gut! Kefir probably wins out in functional probiotic content, but Kombucha has the added benefits of digestive enzymes. So I use a mix of both.  (My favorite Kombucha is GT’s btw).

4. Fennel Oil

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Fennel oil is great for relieving gas. Apply to the abdomen in the same way as the peppermint oil and fart away! You’ll feel so much better- let it go!

 

 

5. Yoga

Yoga can help digestion in a lot of ways, but I especially use it when I’m constipated, bloated or gassy. Type “yoga for digestion” into the youtube search bar and you’ll have tons of digestive friendly routines to choose from at a variety of difficulty levels. My go-to is Yoga with Adriene–she has several digestive/detox flows that help me every time! There are also some specific positions that can be utilized on their own to provide quick relief–like the figure-four stretch to relieve gas quick.

6. High-Calorie Shake for Gastroparesis and Gaining Weight

For my gastroparesis buddies or people who need to gain weight here’s my top-secret (not really) shake recipe that I survived on for eight months when my stomach couldn’t handle solid food:

  •  1 banana
  • 1 Ensure/Boost (high calorie kind)
  • 1 serving of favorite protein/nutrition powder (I like Orgain and VegaOne)
  • Several scoops of soy or coconut ice cream (or regular if you can tolerate it)
  • About a tablespoon of sunflower seed butter (could use peanut/almond butter)

Blend together and enjoy. Of course, I always used chocolate flavored everything, but you can use any flavor you like I suppose.

7. Apple Cider Vinegar

ACV is great for indigestion, heart burn and a sour stomach. It’s really important that you get the organic/all natural kind with the mother–it’s way more effective. The taste is pretty potent, so I always mix it (1-2 tablespoons of ACV) with a glass of water (heated), some lemon juice and a generous amount of honey. Sometimes I add fresh ginger for an extra kick of stomach-calming power.

8. Miralax

When you have to reach for a laxative, Miralax is your best bet. It’s not painful or habit forming like other laxatives because it doesn’t stimulate your colon to contract, it just draws water into it to make everything flow easier. A trick I’ve recently learned is that, especially if you’re like me and have to take Miralax on a regular basis, it’s best to take it at night. When I took it in the morning I had to take double the normal dose to make things flow normally that day; now I take a normal dose at night and things always run smoothly the next morning. So essentially you can half the dose you need when you take it at night, because it gives it more time to work. Also don’t pay for the name brand if there’s a generic–they’re the exact same thing but you pay extra for the “Miralax” on the bottle.

9. Allergy Friendly Foods I Love

ms-NX1khDWhether you have actual allergies or intolerances, eating the wrong foods can bring on a lot of bodily distress. I have a long list of foods that I avoid–some allergies, some intolerances. Here are some of my favorite allergy/sensitivity friendly items:

  • Enjoy Life Chocolate Chips: The only completely dairy and soy free chocolate I’ve been able to find (also gluten-free and nut-free)
  • Sneaky Chef No-Nut Butter: This stuff is seriously awesome. It tastes like a nut butter, but it’s made from golden peas! No nuts, soy, or seeds!
  • Luna Bars: If soy is a no-no for you then so are these, but they do have a couple totally nut free varieties (with 8 grams of protein)
  • Kind Breakfast Bars and Healthy Grains: Also have some totally nut free varieties that are also gluten and soy free.
  • Cheerios: Almost all types of Cheerios are now gluten-free! Mmmm tastes like childhood!
  • Annie’s GF Bunny Cookies: Gluten-free, not crazy high on the sugar or fat content, and delicious! These are my newest addiction.

 

10. Tummy Drops

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Click on pic for link to tummy drops at Amazon

I saved the best for last. I first tried tummy drops a couple years ago and they’ve saved my tummy many a time. I always keep both ginger and peppermint tummy drops on hand–some at home, some in the book bag, some in the purse–wherever I go, they go with me. They were created by two doctors–one a GI specialist, one an avid cook–so they taste good, but more importantly THEY WORK. Ginger tummy drops are wonderful for nausea and motion sickness; they work better than anything short of prescription anti-nausea meds. The peppermint kind are powerful against intestinal cramps, urgency, bloating and a mildly upset stomach. They’re great as a tag-team with peppermint oil application or for when you’re in a situation where you can’t exactly lift up your shirt and start rubbing oil all over it. Sticking a drop in your mouth is a tad more discreet.

So there you go. My top ten tips for tummies are now yours to try!

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ADHD and Me?…Wait What?

So I haven’t written in a while. My bad. But let’s skip ahead because big things are afoot.

Well actually we have to skip backward first technically–to January.

Over Christmas break I made a resolution: to start seeing our school counselor this semester. I recognized that my anxiety has been really limiting me and overall making life much harder than it needs to be. I further recognized that I wasn’t doing everything I could to deal with it. Here I am at college where counseling is offered for free by a super awesome support staff–and I wasn’t taking advantage. So I resolved to change that.

It’s one of the harder things I’ve ever done–definitely not something I was super comfortable with. Or am for that matter. But I got started and that was the hardest part. And I’m SO GRATEFUL I did.

See I went to get help for anxiety, but it turns out most of the symptoms I, my family, and other medical professionals have attributed to an anxiety disorder my whole life are not actually, well, anxiety. Not at the core at least. Actually I have ADHD.

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Like this but a child

Admittedly, when Dr. K first brought it up I was SUPER skeptical. All I knew about ADHD was encapsulated in the stereotypical image of a little boy bouncing off of walls, which is essentially the opposite of me in every way. But since then I have learned that there is a type of ADHD–predominantly inattentive type–that presents without hyperactivity (or at least any hyperactivity is internalized). The more I found out about this type of ADHD, sometimes called ADD, the more the lightbulbs went off. But still I was skeptical.

Finally last week I got started on medicine to treat ADHD and holy cow. I couldn’t believe it. I still almost can’t–I’ve never had a medicine work so well, so quickly and with so few bad side effects. From the very first day I’ve felt so much better! I feel much more calm–less anxious, less constantly overwhelmed; I’ve been sleeping better than I have since I was a little kid; I’ve felt more like interacting with people and less stuck in my own head; my migraines have been better; I can focus better and more consistently; I don’t have to fidget so much… I could go on, but you get the picture.

It’s like putting on glasses.

Or like the fire that’s been burning in my brain my whole life has finally been put out.

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My brain without medication

It’s so freeing.

It does so much more than just help me with my schoolwork. I finally feel like myself–like the me that I know has been inside somewhere but has always been locked away.

So I guess the moral of this story is, if you’re having a hard time with your mental/emotional health, suck it up and go get help. Yes, it’s hard and kinda scary. But it could change your life!

It’s Hard Work Being Sick

Last month my normally indomitable dad got real sick with a bad chest infection. In the first case, this man who seems to exercise just as much as he sleeps, rarely gets sick. In the second, when he does get sick he usually gets over it real fast. This time that didn’t happen. He had to go on antibiotics and a bronchodilator (which he didn’t use much because it made him feel weird), miss work, and feel real lousy for a couple weeks. During this time we were having a text conversation- extended in time but limited in word count as is our way- and he said something that gave me a Loki moment: “Being sick is hard work!”

Now I was certainly not happy that my pops was so sick, but it was nice to feel understood by my nearly super-human dad. Being sick IS hard work. But that’s a hard thing to understand unless you’ve experienced it–which is why it’s so hard for healthy individuals to understand what life with chronic illness is really like. They wonder why some people with chronic illness can’t work, or if they can, only part-time; they think it laziness or *shudder* “fun” to spend the day in bed; they don’t understand when we can’t exercise, why we’re always so tired, or why we need so much rest… the list goes on and on. But luckily my dear-old-dad has the answer to them all–being sick is hard work!

Chronic illness is often a full-time job in itself.

A day in bed because of pain/sickness is by far more exhausting than a normal day up and about, and is NOT fun.

Dealing with constant pain/illness is exhausting. Ex. Haust. Ing.

Oh yeah and did I mention? Being sick is hard work!

It drives me crazy (somewhat literally) that I haven’t been able to work out basically at all this semester. You know what I have done though? I’ve had colds, migraines, stomach viruses, the flu, and 1, 2, 3 infections- including a sinus infection I’m dealing with right now. I miss running. I miss basketball. I miss being strong (although I never much cared for the lifting itself–picking things up and putting them down just isn’t that amusing to me). I miss even just being able to walk or bike or do yoga on a regular basis. (Hopefully I’ll soon be able to start the long, long climb into activity again, but it’s hard to build anything with constant interruptions from sickness).

It hurts my pride desperately that I’m not able to work. I want to be independent. I want to work. But right now school takes all I’ve got and more.

The thing is this: chronic illness is all the time. No break. It doesn’t matter if you’re out of juice physically or mentally–there are no time-outs, no subs. There is no choice but to keep going every hour of every day; no choice but to wake up every morning having to face the thing that almost broke you the day before–there is nothing but constant, relentless, hard work.

So for heaven’s sake don’t judge me if I need a nap 😉

Subcutaneous Ig Infusions Part Two: Infusing

Ok so here’s a video (well three technically) of me doing my subq Ig infusion. Below the videos I’ve outlined the steps to doing an at-home infusion. Happy infusing!

-I’m not sure why I’m upside down in the freeze frame but once you play the video I stop hanging from the ceiling-

In case you don’t have the patience to watch my awkwardness for the whole time (like me), or you missed something because of my mumbling and/or poor camera skills, here are the basic steps to doing an Ig infusion:

  1. Set out your supplies (needle set, tubing, syringes, mini spike, alcohol prep pads, gauze pads, Ig meds, etc.) on your sterile drape and/or mat. (Having taken your meds out of the fridge at least a couple hours earlier so it can get to room temp)
  2. Take any premeds.
  3. Choose your sites and apply numbing cream, with a tegaderm over it to keep it in place.
  4. Pull the cap off your Ig bottles and sterilize each with an alcohol prep pad.
  5. Attach your mini spike to the syringe and take off its cap.
  6. Stab through the rubber cap of your Ig bottle with the mini spike and draw the medicine into the syringe by pulling down on the plunger.
  7. Attach one end of the rate tubing to the needle set.
  8. Remove the mini spike from the syringe and attach the other end of the rate tubing to the top of the syringe.
  9. Prep the tubing by pushing down on the syringe until the medicine reaches your needles.
  10. Remove the tegaderm covering your numbing cream.
  11. Mark area where numbing cream is BEFORE wiping it off with an alcohol pad.
  12. Sterilize site (with alcohol wipe or other sterilizing technique provided by your pharmacy)
  13. Pull needle flaps back and pinch together then remove needle cap.
  14. Pinch skin and fat where you’re going to stick- pulling it up.
  15. Stick the needle in smoothly and quickly, keeping it straight- don’t insert at an angle, just straight in. If you have a hard time sticking take three breaths and then stick on the third exhale.
  16. Secure needle with tegaderm.
  17. Repeat for all sites.
  18. Once all needles are placed pull back on the syringe to check for blood drawback.
  19. If no blood comes into tubes you’re ready to go- place syringe in pump and turn it on!
  20. If you get blood coming back into one of your tubes- clamp off that site, remove the needle and infuse in your remaining sites.
  21. Once your infusion is done turn off the pump and take the syringe out of it, then remove your needles- put a bandaid on the site if it bleeds or leaks.
  22. Cut your needles off the rest of the tubing and place them in your sharps container.
  23. You’re done!

Subcutaneous Ig Infusions Part 1: Supplies

This past week I did my monthly order of my Ig meds (Gamunex-c right now) and supplies. Since I’ve been doing this once a month for nearly five years now, it is totally automatic. I know all the names of the supplies, the amounts I need, the sizes I need, etc. But as I was ordering this week I had a flashback moment as I was mechanically naming off the supplies I need in this month’s shipment to when I first started out–it was the weirdest thing learning all the special names for squares of plastic tape and the numbering of tube sizes and needle sizes. And I also remember it was a little overwhelming at first. So for today’s post I’m going to go over the basic supplies for a Subq Ig infusion.

Typical Subq Supplies List:

  • Premeds – Most people take premeds to help limit side effects from the infusion. The most common premeds are Benadryl and Tylenol. I use 25mg of Benadryl and 650mg of Tylenol.
    • Tylenol
    • Benadryl
  • Epipen – If you’re doing an infusion at home, whether it is IV or Subq, you have to have an epipen on hand in case of a severe reaction. When you’re being taught to do your home infusions, you will also be taught how to use the epipen.

  • Tegaderm – These clear, stretchy tape-like things are used to keep needles in place during the infusion.

  • Medical tape – You may have a variety of uses for the tape. I use some at the bottom of the tegaderm as extra help to keep the needle in place, even if the tubing gets caught on something.

  • Numbing cream – You put numbing cream on 20-60 minutes before your infusion in the places you are going to stick the needles. It helps it not to sting so much when the needle goes in.

  • Bandaids – I figured you wouldn’t need a picture. Often you’ll need to put a bandaid on each of your sites for a while after you’ve pulled the needles out at the end of the infusion.
  • Tubing – tubing, or rate tubing, controls the speed at which the medicine is pushed into your sites. Different numbers on the tubing correspond to either faster or slower rates. Right now I use F120 tubing, which is a pretty slow rate. When I was on Gammagard I used F900 tubing, which is much faster. It’s all a bit confusing at first but your nurse and specialty pharmacy will help you figure out which rate tubing is best for you.

  • Subcutaneous needle set – For a Subq infusion you can have anywhere from 1-6 or more needles. How many needles you need will depend on the medicine you’re on, the dosage, etc. I think it is pretty typical to start with a 4 needle set and increase or decrease depending on how your body handles it. In addition to the number of needles, there are also different size needles in length and gage (width). The typical length is 9mm. 6mm is for kids or people with very little body fat. 12mm can be used if you are having troubles with leaking. The typical gage of a Subq needle for Ig infusions is 27. Your doctor will typically order the size and gage they think best originally and then you can work with your specialty pharmacy to adjust as needed.

  • Syringes – These are what hold your medicine during the infusion. In setting up the infusion you draw your med from the bottle into one or more syringes, then you hook up the tubing to the syringe and put the syringe in the pump!
  • Mini spikes – These are what you use to draw your med from the bottle to the syringe(s).

  • Gauze pads – These have many uses, but they’re kinda like the tape or bandaids–pretty self explanatory.

  • Alcohol wipes – Also called alcohol prep pads, you use these to sanitize your skin before you stick the needle. You can also use them on surfaces to sanitize– like if you have a plastic mat instead of a sterile drape to set your stuff up on, you’d need to sanitize it with the alcohol wipes before each infusion.

  • Sterile drapes – These provide a sanitary surface for you to set up all your infusion stuff on.

  • Infusion pump – Your pump pushes the medicine into your tubing and through your needles into you! Seriously be grateful for your pump because pushing the syringe yourself for hours at a time would be super tiring.

  • Sharps container — At the end of your infusion you put your used needles in the sharps container. When your sharps container is full your specialty pharmacy usually has a prepaid box you ship it to their disposal facilities in.

Ok so I think I covered all the basic supplies you’ll be handling with your Subq infusions, but if you’re still confused no worries! This is just part 1 remember? I’ll have further posts about Subq infusions in the future as well as a video showing you how I do my infusion 😉 In the meantime, if you have ANY questions about Ig infusions please feel free to ask me! Comment, shoot me an email- whatever. I’d love to help you out if I can. You’re not alone!

100 Little Things That Make Me Happy

This month has been rough, no doubt about it. It seems to be the winter from hell, as far as germs are concerned. Since the semester started a month ago, I’ve had two separate stomach bugs, a strep and sinus infection combo, and now a cold. And it’s not just me–my family members and schoolmates with normal immune systems have been sick almost as much! So what are we to do? Well we could dwell on our misfortune. We could freak out about the Petri dish in which we must live our daily lives (and trust me I have). But a monk from Vietnam I’ve been reading recently might have a better idea; in Peace is Every Step Thich Nhat Hanh talks a lot about mindfulness. At a really basic level, I think of mindfulness as noticing the beauty and little blessings all around us every day. So this week I made a list of 100 of those little things that make me happy.

  1. Random 60 degree days in the middle of winter #Virginia
  2. Opening a new tube of toothpaste
  3. Waking up without a headache
  4. Being called “aunty randa” (by my niece- from anyone else that would be weird)
  5. The space heater in my room
  6. Chocolate
  7. Purring cuddles from my kitty
  8. Purple and orange sunsets
  9. Not having to be on antibiotics
  10. My flannel sheets- so cozy
  11. My flying pig pj pants
  12. Having time to read for fun
  13. Finishing a long reading for class that seemed like it would never end
  14. Class being cancelled
  15. Goodbye/Goodnight kisses from nieces
  16. Family movie nights/ infusion nights
  17. Acing an assignment
  18. Texts from my parents, always politely signed Love Dad/Mom at the bottom so I know who they’re from
  19. Family dinners
  20. Getting a chance to play the piano
  21. Being treated by a doctor as an equal partner in my care
  22. Walks
  23. Feeling my room get lighter in the early morning when I can’t sleep
  24. Corny jokes- especially my dad’s
  25. Pictures of lighthouses
  26. The sound of rain at night
  27. A cup of hot cocoa
  28. Coloring
  29. Birds singing/ chirping
  30. Baby/ toddler giggles
  31. Finding a great parking spot
  32. Autumn leaves
  33. The smell after a spring rain storm
  34. Getting a great night’s sleep
  35. Listening to scores from my favorite movies (HP, LOTR, Hunger Games, etc)
  36. Parks and Rec
  37. Making others laugh
  38. Deep conversations with people I care about
  39. Hot showers
  40. Getting my back to pop
  41. Finding a favorite pen and then writing with it
  42. Learning something new
  43. Writing on the thick, smooth side of the notebook
  44. An empty laundry basket
  45. An empty sink
  46. Having special chocolate in a secret chocolate stash
  47. Stealing chocolate from my dad’s “secret” chocolate stash
  48. Fresh mangoes and pineapples
  49. Getting through my entire To Do list
  50. Sweatpants and hoodies
  51. Finishing a bottle of antibiotics/ steroids/ other loathed medicine
  52. When anyone, especially a professor says “as it were”
  53. Quoting favorite tv shows/ movies/ books whether or not they are actually applicable to the situation
  54. Being greeted by one or more wagging tails at the door
  55. Cold nose kisses from my cat that often jerk me awake at night (I think she thinks it’s funny)
  56. Having a fire in the fireplace (and therefore having an actual fire place)
  57. Remembering what I’ve been trying to remember that’s been driving me crazy
  58. Putting on a clean pair of socks
  59. Remembering everything I needed at the grocery store
  60. Freshly changed sheets
  61. Having no copay
  62. My cat socks
  63. Spontaneous study breaks when a niece or two or three escapes their parents and wanders into my room
  64. Every day, hour, minute I’m not sick or in a lot of pain
  65. A clean and organized work space
  66. When I know just what to write
  67. Finishing an essay
  68. Eating solid food without pain/nausea
  69. Pulling out the needles at the end of an infusion
  70. Waking up and knowing I don’t have to go anywhere that day
  71. Getting to go to church on Sunday
  72. Not having to rush in the morning
  73. Doing something outside my comfort zone (it’s a very small zone)
  74. Alone time
  75. Feeling good enough to work out
  76. Waking up without an alarm clock
  77. When a medicine has no bad side effects– oh wait that doesn’t happen… When a medicine has relatively few bad side effects…
  78. Cozy sweaters
  79. Reading a good poem
  80. Stepping on crunchy leaves
  81. Feeling my kitty at the foot of my bed when I turn over in the night
  82. Pictures of Christ
  83. Skyping/Face Timing the parentals on Sunday
  84. The smell of brownies baking (or any goody really)
  85. Getting a big glob of mucus out of my chest or sinuses
  86. Not coughing (remember I had whooping cough earlier this year so the last few months not coughing has been the cherished exception)
  87. When I catch someone doing something silly because they think they’re alone
  88. Anything Harry Potter
  89. The abridged version of Les Mis (so much easier to readdddd)
  90. Old fashion soda bottles
  91. Miniature pigs (I will have one someday!)
  92. Documentaries/ books about inspiring people
  93. Psych and Monk being on Amazon Video now
  94. Warm clothes fresh from the dryer
  95. Sunshiny days
  96. Watching lightning during a thunder storm (if it hasn’t already given me a migraine that is)
  97. Naps
  98. Christmas lights
  99. Finding a good song on the radio
  100. Jar tops that go clicky-clack

 

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Dad’s “secret stash”

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Bestower of nose kisses

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Flying pig pjs and kitty socks #thuglife

 

The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant health issues the new year means something else as well.

It’s something we dread.

It starts not on January 1, but with the first major medical necessity of the new year.

For me, and my PI homies out there that is generally our first infusion shipment of the year.

You dial the specialty pharmacy number with a knot in your stomach, you try to sound normal as you go through all the normal shipment info, then the moment arrives– with trembling hand you hold the phone to your ear and wait for the bomb to drop. Your copay amount.

You see, the new year means that the deductible you met last year is all gone and you have a fresh pile of money you have to toss into the insurance pit before you’ll get decent coverage.

It also means that your insurance company can make all sorts of changes that come into effect with the new year–maybe they’ll move your infusion medication to a different tier on their covered medications meaning they cover less of it, maybe they’ll increase the cost of your medication, maybe they’ll make you switch to a whole different one because they no longer cover the one you’re on… The terrifying possibilities are nearly endless.

This past week the Chronic Illness New Year hit me and my family hard. I went to order my months supply of Gamunex-c and infusion supplies to be met with the wonderful surprise of my copay increasing from $250 (but actually zero because our deductible had been met with copay assistance from the wonderful folks at Gammagard before I was forced to switch) to $600.

For those of you who aren’t familiar with Ig infusions, this may seem like an impossible amount (and really it should be), but the sad fact is that this is a problem continually faced by those who need Ig infusions and their families.

Luckily most Ig companies provide copay assistance to those who use their product and need help paying for it (which is basically everybody). After my wonderful doc and I jumped through several hoops, it looks like I will be able to get copay assistance starting next month from my new buds at Gamunex. But even with assistance many families still have to shell out a considerable amount before the year’s deductible is met.

As I’m writing this I’m thinking I really, really wish that I didn’t have to know so much about health insurance already. But I’m also thinking despite the hoops, the bills, the stress, and all the wonders of the Chronic Illness New Year, I’m just so grateful to be able to have the Ig infusions. I’m so grateful that my immunodeficiency was able to be diagnosed and there is this treatment. And it does help. A lot.

So Happy Chronic Illness New Year! May the odds be ever in your favor…

How Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least.

See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an immunodeficiency? Migraines? Anxiety?

No. You can’t. Let’s be honest–you can’t even tell which of us is older (me people! Me. The one with bad vision. Everyone always thinks she is older). That’s what an invisible illness is–a condition that can’t be identified by just looking; it’s the pain that no one sees, the panic that no one notices, the everyday struggle that goes unrecognized, the illness that goes unseen, unrealized, sometimes unbelieved–that is what is meant by “invisible.”

Really almost all chronic illnesses fall under this category because so little of what goes on with our bodies is visible to the naked eye. And yes, this is good because I think most people, sick or not, prefer not to stick out. But it’s also bad. Why?

Well let’s go back to me as an example. Except for my inability to smile normally for pictures, I look like a pretty average college student (I think so at least). So people who don’t know me, who say, see me in a morning class but not in an afternoon one, would assume I’m just skipping that second class. And that, in turn, would change the way they look at me. I know this from high school; most kids I had classes with the last couple years of high school thought I just skipped class all the time. So did some of the teachers. Because they couldn’t see what was wrong with me, and because at the time, I didn’t even know exactly what was wrong with me, they didn’t believe that a teenager could really be sick that much. Therefore I must just be a lazy, liar skipping class and then making up tales to cover my butt.

We humans have a hard time believing in what we cannot see. It’s silly, but it is definitely a thing. When applied to invisible illness, it causes people to say stuff like “but you don’t look sick,” in turn causing an increased co-morbidity of chronic illness and homicidal impulses (kidding). But hearing stuff like “but you don’t look sick” or “but you’re too young to have all these problems” does get old real fast. Not that I would like people to come up to me and say, “wow you look awful!” That’s not what I’m getting at here. What I’m getting at is that all people with invisible illnesses want is for you to believe them. Believe when they say they’re in pain, they’re in pain–even if you can’t see it. Believe when they say they’re tired, it’s more than just being a little sleepy. Believe them when they say they’d love to, but they’re not feeling up to it. Just believe and be understanding. Those two actions alone can significantly lift the burden of an invisible illness.

Another Not-So-Smooth Start to a Semester

If you’ve been following me for a while you’ll remember that my last semester started off with being unable to get my infusion for three weeks and then coming down with whooping cough. Needless to say I was hoping for things to go a bit smoother this semester. But that’s not really how life works I guess.

Thursday was our first day of classes. I had three classes (French, Screen Writing and Dramatic Literature) and a meeting to update my accommodations letter. While I was in Screen Writing I got the bad news–my sister and niece had started throwing up after I left for class. We had the dreaded stomach flu in our home.

The last time I had a stomach virus I was a brand-new 19-year-old. That virus damaged my digestive system, causing gastroparesis (literally “stomach paralysis”), and leading to some very miserable months and ultimately two years away from school. So naturally I have an intense fear of dear old norovirus and all its relatives.

Egged on by this fear I did everything I could to avoid coming down with it this time img_0084around, but by the time I became aware of its presence it was far too late. That night around 9:30 I threw up for the first time. And then again. And again. And again. Until about 5 or so in the morning. *shiver* The stomach flu is the WORST. Every time I have it I get like minor PTSD where for a while I can’t stand certain foods, clothes, tv shows, movies–anything that is associated with the experience. This is especially true for the virus that permanently messed up my digestive system and changed my life.

EA57ED6A-C454-4F26-A275-0833E9EACA3BBut like I’ve said before, even the worst of things pass, and so did this. Well it’s passing. Friday I was still quite sick and miserable, even though I had stopped involuntarily ejecting the contents of my stomach and intestines. Mostly I had gotten really dehydrated and I was having a hard time getting sufficiently rehydrated. I ended up going into the local urgent care in the afternoon because of this; they did not give me a saline IV as I had hoped they would, but they gave me some strong anti nausea medicine to help me be able to sleep and drink more. I hadn’t slept since Wednesday night so I was beyond exhausted. Later Friday (about 4), I laid down to take a nap and woke up at 9:30 the next morning!

Right now as I write this, I am doing my infusion. I didn’t want to do it until I was well hydrated again, since insufficient hydration makes the infusion process (and aftermath) seriously miserable. And I’ve had quite enough of that this weekend.

So yeah, another rough start. But I don’t think it bodes ill for the semester at large–I think it’s gunna be a great one, as a matter of fact. Because, well, why shouldn’t it be?

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)
    F1657E3C-0A51-427D-992B-F05FE718D1E7
  • And of course everything in my on-the-go kit as well

 

 

What do you keep in your crash kit?

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