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ADHD and Sensory Issues: Why Is Everything So Loud?

My whole life the world has been rather assaulting. The noise. The lights. The smells. Basically all of it. And I never realized that the way I experience the world is different.

In April I found out that though there are many, many people that experience the same bright, smelly, noisy world I do, it’s not really supposed to be like that. And I found out the reason why I experience the world the way I do–ADHD.

I didn’t know much about ADHD. I didn’t know that sensory processing issues are a huge part of ADHD. I didn’t know about sensory overload; I didn’t know that ADHD isn’t just about not being able to focus in on something–it’s more about not being able to filter things out. And the big one of course- I didn’t know that I have ADHD.

The more I learn about ADHD, the more “ah-ha” moments I have. Looking back, I now know that my hatred of tight clothes; my hair coming over my ears; the smell, taste and texture of onions; crowds; the feeling of lotion, sunscreen or any amount of make up on my skin–all that and so much more is because of ADHD sensory processing issues.

Now that I have been diagnosed, I am also more aware of how my ADHD affects me from day to day. This past week, for example, hailed in a new semester. Sitting in class has always been an inexplicable torture for me. But now I am more aware of why. Now as I sit in class I am aware of my need to fidget, of how hard it is to just sit and listen; of how the voices in the hall, the sound of the AC, the typing of the other students, the laughter of the class a floor above us, the smell of the kid across the room’s snack–how it all constantly bombards me and pulls my “focus” in a hundred different directions. It’s not like I’m dying to get up and run and jump around the room. It’s not that I have a hard time sitting when my brain is engaged. It’s just that my ADHD brain has only two modes–processing everything and therefore focusing on nothing, OR intense focus on one thing to the exclusion of everything else. So no focus, or hyper-focus.

ADHD hyper-focus is definitely a real thing. But today I want to focus on the other end of the spectrum. I think of it as hyper-awareness. The brain is supposed to filter the sensory input it receives and basically tune-out or turn-down the input that is not important. So a non-ADHD brain is able to filter out “background” sounds, smells, sights, and feelings, and keep them well, in the background. This allows it to direct and maintain attention to, say, the lecture. But the ADHD brain doesn’t filter like it’s supposed to. So instead of having one thing in focus and everything else in the background, everything is in the foreground. Everything. All the time. And that gets pretty overwhelming. And exhausting.

Basically Sherlock is an ADHD brain….

Right now I’m trying to think of a way to wrap up this post, but our next door neighbor is edging their yard and my niece is resisting nap-time upstairs and I hear the rattling of the dryer and through my window I see the people across the street moving in and… you get the idea.

And this is me on medication. Though my doctor and I are still working to find the right dose, so I think it could be better. Man that edger is loud. And I’ve been working on this for like an hour. Yikes.

So if you’re ever trying to talk to me and it seems like I’m not paying attention, don’t be offended. I promise I’m trying. Probably. But that friggin edger!

P.S. Yes, I wrote this two weeks ago (Labor Day) and forgot about it. So there’s that.

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.

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    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!

5 Years of Ig Infusions

Last week I celebrated my 23rd birthday, which is hard to believe I know. The day before my birthday marked five years exactly since I had my first Ig infusion.

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I was diagnosed with a primary immunodeficiency towards the end of my senior year of high school, after many years of sickness, infections, tests and endless doctor’s appointments. As I think is typical, it took a while to get insurance approval for infusions and get set up with the specialty pharmacy.

Finally on June 17th 2013 an infusion nurse came to my home and gave me my first dose of IVIG. The next day I turned 18, and the day after that I graduated from high school. Before heading out to school that fall I started self-administered sub-q infusions. And now five years later here I am.

When I was diagnosed and told about Ig infusions I was excited, I was hopeful, but I didn’t know what to expect and honestly did not expect them to be as life changing as they have been. That first year I was on infusions I went almost an entire year without an infection; before I started them infections were almost constant. Since then other bodily incompetencies have brought me down a bit, but the infusions still help tremendously. ms-95DmfR

At some points over the last five years the realization that these infusions are life long
has been daunting. Sometimes on infusion night I’ll drag my feet. I’ll think, I just really don’t feel like doing this today. Then the thought that when I’m 30, 50, 70, 90–I’ll still be
doing these infusions, well that’s a bit of an exhausting thought.

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But the truth is, it’s just part of my life now. And man I am so grateful for that. It’s hard to believe I’ve been doing them for five years already. It’s gone by fast. Week by week, month by month, and suddenly five years have gone by. And though they’ve certainly had their rough spots, it’s been a great five years.

I look forward to the next 60-70ish years with my infusions–til death do us part.

Gallbladder Pain, But No Gallbladder…

A few months ago I started having episodes of intense abdominal pain, often accompanied by nausea, that were reminiscent of the gallbladder attacks I had last year. The only problem is, obviously, I had my gallbladder removed. So it shouldn’t be hurting…

It Feels Like a Bad Gallbladder, But Doesn’t Act Like It.

This pain was a little bit different than with my gb. There were no consistent food triggers I could find. Sometimes any food would cause pain, sometimes lack of food would cause pain. This is in contrast to gallbladder attacks being fairly predictably caused by food, especially fats.

Like gallbladder attack pain, this pain almost always started in my upper right abdomen, under my rib cage, but would spread towards the middle and to the left. And I swear it felt almost exactly like the intense, stabbing, bursting/pressure type pain I would get from my lousy gallbladder. It was seriously so weird.

By April I was waking up every night with pain that would keep me up for at least 30 minutes, often a lot longer. During the day my stomach seemed to disagree with everything and I was taking Zofran just about every day to manage the nausea.

I even ended up in the ER for an episode of pain and nausea the evening before my finals started (around the same time of year I went to the ER last year for gb stuff, though I didn’t know it was that at the time). The folks at the ER were also confused, because my pain sounded just like gallbladder pain, but… no gallbladder…

Hmmm, Ulcers Maybe?

867FF43D-D3F6-4849-8020-98D406B7BD07.gifWell I got in to see my GI shortly after finishing my finals. I experienced some serious dejavu–one year later, same time of year, same office, same GI, same symptoms. She even said basically the same thing as she had one year before: she suspected ulcers. So she wanted me to try acid suppression medication to see if it helped and we would also schedule an ultrasound of my biliary system.

The thing is last year I tried the acid suppression medication and it didn’t help. In fact it made me feel lousy. And then we found out she was wrong and it was my gallbladder. So I was not surprised, but not thrilled when she said the same thing again.

This time though, the trial ulcer meds really helped. The first day I was on them I slept through the night, without being awoken by pain, for the first time in weeks and weeks.

So we’re doing a month worth of treatment with Prilosec in the morning and Zantac at night and then we’ll see where we’re at. If my symptoms return I’ll probably need to have an upper endoscopy to actually see what’s in there and test to see if I’m infected with H. Pylori–one of the most common causes of peptic ulcers.

No NSAIDs For Me. Good Thing Tylenol’s So Effective…

In the meantime I’ve been instructed to stay away from all NSAIDs. My frequent use of NSAIDs for migraines is one of the things that has caused her to suspect ulcers (twice). Certainly they could be a problem. But staying off them is no easy thing. Even though my migraines are doing better with a preventative regimen of Prozac and Verapamil, and especially since I started Concerta for my ADHD, my head still hurts a lot. And Tylenol is not super helpful. But so far I’ve been able to manage. Thank goodness it’s summer.

What is Primary Immunodeficiency?

April was Primary Immunodeficiency Awareness Month, but I was so overwhelmed with crazy end-of-semester stuff and crazy body stuff that I totally goofed—I didn’t write a single PI awareness post on my blog about PIBut better late than never right? So let’s talk about it. What is a primary immunodeficiency and what is it not?

What PI is:

  • A hereditary/genetic defect in the immune system.
  • A defect occurring in one or more components of the immune system.
  • A blanket term to describe more than 350 rare, chronic disorders in which part of the immune system is missing or functioning improperly.
  • Lifelong.
  • Treatable, but not curable.

 

Basically a primary immunodeficiency is a problem with your immune system that you’re born with (although they can develop later in life and often aren’t diagnosed for many years either way).

 

What PI is not:

  • Contagious.
  • An autoimmune disorder.
  • Just a “bad” immune system.
  • Visible.
  • A defect in the immune system caused by something else—like AIDS or chemotherapy (it’s not “acquired”).

So when someone tells you they have PI don’t get all weird about it. They’re not contagious. Most likely, they’re not dying. Just be cool.

 

What having PI means:

  • Increased susceptibility to contagious illnesses.
  • Increased susceptibility to infection.
  • Infections that are recurring, chronic, difficult to clear up, severe, or caused by unusual organisms.
  • You don’t build immunity from a previous infection (whether viral or bacterial).
  • You’re a medical zebra—PI is rare, so it’s a “zebra” condition instead of a more common “horse” condition.

Let me explain—no there’s too much. Let me sum up. Having a primary immunodeficiency means you get sick a lot, because your immune system doesn’t work like it should. Since it’s a genetic/hereditary disorder, having PI usually means it either runs in your family, or you’re really lucky and your genes mutated…

To better understand PI it’s important to understand how the immune system is supposed to work

How it Works – The Immune System

There’s two basic parts to the immune system: the innate immune system and the adaptive immune system.

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The Innate immune system starts, like all of the cells that make up the immune system, in the bone marrow with a stem cell.  The several types of cells that make up the innate immune response (neutrophils, monocytes, natural killer (NK) cells, complement proteins) are ready to go straight to work once formed. They require no additional training to do their jobs.

In most cases of PI the innate immune response is a-okay. The problem occurs in the adaptive immune response.

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The Adaptive immune system also starts in the bone marrow. There they become either  B-cells or T-cells, the two major parts of the adaptive immune sytem. Then they are split up. T-cells go to the Thymus to finish developing and get trained for their jobs as Killer T-cells, Helper T-cells, or Regulatory T-cells—which all basically deal with the body’s adaptive response to foreign substances (ie viruses) and make sure they don’t attack the body’s own tissues (as in autoimmune conditions).

B-cells stay behind and get edumacated in the bone marrow. They mature into Plasma cells, which in turn can mature further into Memory B-cells. Plasma cells are responsible for producing antibodies, which are highly specialized proteins that fit “invaders” like a key in a lock. Memory B-cells remember the invaders that you’ve encountered before so a rapid response can be mounted if you encounter it again.

In a lot of primary immunodeficiencies the main problem is with the B-cells. They don’t mature like they’re supposed to. They don’t pay attention in bone marrow class or just skip it all together. So they don’t make antibodies like they should and they definitely don’t remember past infections. It’s like your adaptive immune army is made up of a bunch of cats—they just do whatever the heck they want, which is usually nothing. So bacteria and viruses waltz in again and again, and even if they’ve gotten in before your cells are perpetually unprepared.

Basically your B-cells look like this:

 

 

So you can see why they might not be super effective…

 

 

 

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

ms-mufLsy

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!

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