#it’s fine i’m on a steroid if i have an allergic reaction no i won’t

[mars-ipan]

i decided to put on a face mask my mother bought me just for funsies and it is refreshing but it is also so much slimier than i anticipated

[maximumsunshine]

ANAPHYLACTIC SHOCK PSA

Ok, y’all.  I’m going to put this out there because apparently my husband, who’s been living with me and my allergies for 17 years now, didn’t know this.  Hell, even I didn’t realize some of this.  So I’m going to do my best to make this public knowledge.

First, anaphylactic shock can be progressive.  It gets worse with each exposure to the allergen in question.  This is so important for you to know.  Frequently, as with me, your throat doesn’t close and kill you the first time you are exposed to something.  It’s not uncommon to not need an Epipen (or even Benadryl) the first time someone is exposed to an allergen, even if they are indeed suffering some symptoms of anaphylactic shock.

But what are the other symptoms?  The “lesser” symptoms?  Let’s look at them.

skin reactions such as hives, flushed skin, or paleness

suddenly feeling too warm

feeling like you have a lump in your throat or difficulty swallowing

nausea, vomiting, or diarrhea

abdominal pain

a weak and rapid pulse

runny nose and sneezing

swollen tongue or lips

wheezing or difficulty breathing

a sense that something is wrong with your body

tingling hands, feet, mouth, or scalp

Some of these symptoms are more obvious than others so I’m going to break it down as it applies to me.

The first time I realized I was allergic to apples, some 17 years ago, it was because the apple sauce I kept eating for lunch while pregnant with my eldest made my throat kind of itchy and feel like it was a touch swollen.  Swallowing was slightly difficult but not anything significant.  I can’t stress enough that this was extremely mild.  I thought I just had a touch of a sore throat like I was getting a cold, only it only happened when I ate the applesauce and there were no other cold symptoms that ever showed up.

What I know now is that I built to that and hadn’t even recognized the earlier symptoms.

Here is what an allergic reaction, that doesn’t always involve my throat, looks like to me now that I know what to look for.

First, my stomach is upset.  It feels overly full, like I just ate a huge feast, even though I only ate a normal amount, and I’m maybe a bit nauseous but always extremely gassy.

Then an hour or so later my chest starts to feel tight.  It’s like I have bronchitis (the best comparison I have because I’ve had it so many times) only I’m not coughing.  All in all, it feels like my lungs are being seized and it’s hard and even painful to breathe.

Somewhere in this comes the ominous feeling of doom.  Something isn’t right.  In fact, something is very very wrong.  If I’m paying attention to it and recognize the symptoms, then I pin it down to something being very wrong in and with my body.  Folks, this is because I’ve poisoned myself and am potentially dying.  I should feel like something’s wrong.  Don’t discredit this feeling.  It’s almost like a panic attack without the racing heart.  It’s just ominous. 

Around that time, I sometimes, but not always, feel like I’m having a hot flash only it doesn’t go away like my hot flashes usually do.

Usually, if my throat is going to come into play, it’ll happen about 2 hours out.  A mild reaction means it’s just sort of scratchy.  Maybe a touch of difficulty swallowing, but not so bad that I can’t take a small handful of Benadryl.  Of course, a serious reaction means that handful of Benedryl needs to instead be liquid and if you can’t even do that, you need to use the EpiPen.

Some would say that you should have used the Epi earlier in the process.  Talk to your doctor about when it’s an Epi emergency versus when it’s just a Benedryl emergency.  The next step is to get yourself to an ER for steroids and shit.  Don’t do what I do (which is to take too much Benedryl and sleep off the maybe dying process).  Seriously, don’t do what I do.  One of these days I’m going to wake up dead.  Also, and I can’t stress this enough, if you had to use your Epi it is 1000% time to go to the ER.  Don’t drive, call 911.

Now another point to make.

I described this as a process that takes hours to fully develop.  This is not even close to always the case.  I described it this way to really fully make the point that just because your throat didn’t close up immediately, doesn’t mean you didn’t have a reaction and it doesn’t mean that it won’t.  

I’ve heard plenty PLENTY of stories where someone was exposed to something they shouldn’t have been and it took all of 30 seconds for their throat to close and the only reason they survived is because there was someone right there with access to an EpiPen who knew how to administer it.

Anaphylactic can play out in hundreds of ways.  It can take on any combination of symptoms and it can all happen really fast or it can take hours for a reaction to develop.

The first reaction can be so mild that you don’t even realize you had one at all, allowing you to repeatedly expose yourself to the allergen until it finally clicks what is happening.  Each exposure getting a little worse than the previous one. 

Example:

Somewhere over the last couple of years, I’ve developed an allergy to jarred red sauce for like pasta or pizza.  I’ve been tested and I’m not allergic to any of the individual main ingredients (tomatoes, mushrooms, the herbs) so we’ve collectively (including the doctor) come to the conclusion that it’s the preservative.  The solution for the past few months is that I’m only allowed to eat fresh, homemade, red sauce.  Most pizza chains are ok.  (Papa John’s is not.)  Pat has his grandmother’s recipe.  I am fine.

However, two nights ago I may have had a mild reaction to Pat’s homemade sauce.  I don’t honestly know because I happen to have a cold and honestly, early reactions already look like a cold so it’s stupidly hard to tell the difference.  I just know that my chest gradually began to tighten and my throat became compromised.  But that happens anyway with a cold?  I took a couple of Benedryl and went to bed.  I still don’t know if I had a reaction or not.

So I guess the next time I expose myself to it, I need to make sure I’m otherwise healthy.  Only then will I know for sure.  

(Also, if I’m allergic to red sauce I’m going to straight-up riot.)

There is no one way to experience anaphylactic shock.  It doesn’t look the same with every person and it doesn’t look the same with every allergen and it doesn’t look the same with every exposure to the same allergen.  It’s progressive with time and exposure.

So learn the symptoms.  Learn to listen to your body.  And if someone says they are maybe having a reaction, don’t discredit them just because it doesn’t look like you see on TV.

[mandelene]

First things first: wow you are allergic to literally fucking EVERYTHING. Good thing is that you're a pretty strong person. Best wishes to you. Next: maybe you can upload the image on imgur if you're fine with showing it to us? I am morbidly curious. Also: can you explain why steroids (aka that prednisone thing) help with pneumonia and itching? Never knew that steroids can be used to like, fix non-man parts or man related stuff. I'm medically illiterate 😅😅. Last: good luck for this semester💕!

Yep, I'm really allergy-prone. That's why when I get an allergic reaction to something, I don't want to immediately blame others. I'm not gonna sue them. An allergic reaction is a nuisance for a week or two but not worth the legal fees lol. It'll heal and I won't have lasting damage or "substantial harm" as lawyers say. If my surgeon cut one of the nerves in my wrist or nearly killed me during surgery -- that'd be a different situation lol. I will likely file a complaint though.

To give the full story and clarify since I only clarified in the comments of the last post, when my surgeon came in yesterday and asked how I'm doing, I said, "I was totally fine until I noticed I'm having an allergic reaction to something. I think maybe it's the tape."

He was like, "What tape? We didn't put any tape on you. You have an allergy to Steri-strips, don't you?"

And I said yes, and before I could say anything else, he was cutting me out of the cast and bandages and was pretty exasperated when he saw the tape. That's when he said, "Wow, you're really allergic. I'm so sorry" and explained that it should have never happened and that it should be in my chart that I'm allergic to Steri-strips so why would anyone put any medical adhesives on me?

And I wasn't sure if he did it and was just playing dumb or trying to mislead me, but he sounded genuine and genuinely pissed off and confused. I consulted my mom later and she confirmed that doctors typically don't do the dressings: nurses or physician assistants do. The doctor just puts the sutures in. And I didn't have any tape put on me after the first surgery -- he put Steri-strips on me only after I had my stitches taken out, and that was when I found out I was allergic to adhesives in the first place. So I find it hard to believe that he would just randomly decide to put tape on me directly after surgery this time, with my stitches still in, for the same exact procedure with the same kind of incision, especially since he brought up my Steri-strip allergy without even looking at my chart and without me bringing it up, so he obviously remembers.

When he gently tried to rip the tape off, part of my skin peeled off and I was ready to die. Kudos to my surgeon for being very calm and attempting to be reassuring about it. I was ready to burst into tears lol.

Once I feel better from all of this, I can think about filing a formal complaint with the hospital. I was asleep before everyone else even came in so idk who else was in the room besides my surgeon, the anesthesiologist and one RN (and I remember what she looked like). I just want to make sure no one else gets hurt in the future so at least my suffering isn't in vain. The person who did it should know they fucked up so they can be more careful with others -- that's all I want. I'm not out to get anyone.

So yeah, I had adhesive on me for 12 days and now I look like I have a bad second degree burn. I've been itchy since the first few days after surgery, but I figured it was just from the incision healing and that it was normal. NOPE, adhesive was eating my skin and giving me a chemical burn lol.

I don't mind posting a pic on imgur. Here's the link. http://imgur.com/a/vpQrQzT

This was after Benadryl and Prednisone so it actually looks a little better here believe it or not. The tiny red, blistery hives were the ones that were going up to as far as my shoulder. A word of warning that it might be a little upsetting and graphic. I didn't want people to have to see that on their dashboards. You can't even really see my incision -- the blister/sore covers most of the bottom part of it.

Prednisone is a steroid that's used to primarily treat inflammation, so you can use it to decrease inflammation in the lungs during an asthma exacerbation or pneumonia. It's also used in low doses to treat joint pain/arthritis. And, you can also use it for bad contact dermatitis.

Thanks for the well wishes! 😘

[allorganichome]

Preventing Asthma and Respiratory Problems Using a Green Bedroom

Full disclosure:

I love my green bedroom.

And so do my sinuses. I know, I know…what do sinuses have to do with asthma? Or with the color green, for that matter?

Actually, these all have quite a bit in common – or they did for me. Because what I discovered through trial, error, morning headaches and a lot of maddeningly mysterious sniffling – and a good dose of desperation -- was that making my bedroom as green (natural/organic) as possible made not only my chronic sinusitis but a number of other conditions simply disappear.

A Little Disclaimer

First of all, I’m not a physician. I’m a wife, mother, parent, hiker, dreamer and writer, who just happens to have discovered his personal treasure trove of wellness in going natural. Where? Well, everywhere. It started with organic foods (then, growing my own garden). Next, chemical cleaners went out. Yet I was still suffering with respiratory issues, sinusitis, and eventually, what my doctor could only describe as asthma, though she too was a bit puzzled.

“We don’t know what else to call it,” the doctor told me as I sat miserably on the exam table (good grief, why are these always SO cold?), “but the wheezing and shortness of breath aren’t an issue with a disease or scarring in your lungs that we can see, your heart is fine, you’re not currently sick with a virus, so we’ll just say asthma.”

Great. Now what?

“For now, an inhaler. If necessary, we’ll move on to steroids,” Doc told me, almost casually (yikes!). “But let’s not jump the gun on that yet.”

I was floored.

Steroids?

Not that they don’t have their place, but I have to be honest: I’ve heard a lot of very, very non-happy experiences with steroids. These weren’t for me.

I couldn’t be asthmatic…could I? How could it come on in adulthood? Couldn’t there be another answer?

Don’t Worry…This Isn’t an Infomercial

There was another answer, for both me and my family. Fear not: I won’t be trying to sell you anything unless trying to sell you on the idea of greening up your bedroom counts.

Now mind you, I’m not advising ignoring your doctor’s orders. (For the record, I did try the inhaler.)

But I do want to share with you what ultimately worked for me. Your mileage may vary.

With that said, here are the changes I made. Give them a try and see whether you feel better. I’m willing to bet that at the very least, they’ll increase your comfort level and may even benefit your overall sleep and health.

Electronics Begone!

Believe it or not, electronics really do emit radiation. That’s not a myth. Generally, this is in small doses, and removing the issue might not directly impact your respiratory health, but I found removing as many electronics as possible (yes, even my phone – gasp!) helped me to sleep better, sleep deeper and this seemed to translate into better health over time.

Forget Fragrances

The ONLY fragrances I keep in my bedroom nowadays are petals from flowers I show no allergic reaction to, or herbs grown naturally in my own garden. Even “natural” fragrances, if canned in a spray form, will dissipate into the air in a way that could irritate your mucous linings and make asthma and other conditions more pronounced.

As for candles, it’s the same principle, but with smoke. Smoke is smoke is smoke, as they say (do they say that? Well, I’m saying it). Even the smoke of a soy candle rolled gently on the thighs of mermaids and sprinkled with their tears (that might be slightly facetious) is still smoke, and smoke of any kind can negatively impact a respiratory condition. So skip the candles, or if you want them for their fragrance alone without burning, make sure they ARE all-natural, including the fragrance itself.

Clean Up

Clean your bedroom thoroughly and regularly, but ditch the chemical cleaners. Sprays in particular can be a problem, even if they’re low on lab-created chemicals or are touted as natural/organic, as you are still spraying particles into the air.

Instead, wet a rag with water to clean up dust (and DO clean it up – dust is a gigantic respiratory system offender), vacuum and then change the bag immediately (or empty the canister), and wash bedding regularly.

Get to Bed

And speaking of bedding: many commercially produced sheets, comforters and mattresses contain chemicals such as flame retardants or stain shields. These don’t HAVE to be artificial, but due to costs and ease of use, generally, they are. Switch to organic bedding (cotton; linen; wool; hemp; silk) and wash regularly, as dust mites love to cuddle into any bedding, synthetic or not.

Air Things Out

If you live in a low-pollution area, you’re not allergic to what’s currently blooming outside, and the weather is nice, open the windows once a week and allow air to circulate on through. Make sure you keep the door to your bedroom open and another door in the house or apartment, ideally across or diagonally from the bedroom door, open as well.

If you simply can’t do this, consider a great air purifier. READ REVIEWS (I can’t stress this enough), get one with a guarantee/warranty and follow all instructions for REGULARLY cleaning it and changing the filter.

Try these fixes and see whether your respiratory system is happier. For us – my entire family saw improvement, not just with respiratory issues but with skin itchiness and hives (my son), general aches and pains (my husband) and better sleep overall.

Have a good (and natural) night tonight…and every night.

Your Home. Your Life. All Organic.

Source URL: Preventing Asthma and Respiratory Problems Using a Green Bedroom

[renfys]

Bum Hives: Or When Allergies Go Weird

If you follow us on social media at all (check our links out in the sidebar) you’ll know that I ended up and in hospital the other week, and that my allergies are a little out of control right now. Allergies aren’t always about deathly reactions and epi-pens; millions of people suffer from mild to severe allergies and I’m hovering on the edge of middling to severe. Depending on what I’m allergic too – I’ve not quite figured that out yet.

I’ve had allergies all of my life, to various degrees but this is the first time I’ve landed in A and E.

Dogs

  My sister.

My sister has been awkward from the start. I was born on a sunny afternoon in May. My sister was born on a rainy July day at three in the morning. I was a perfect baby too; quiet, well-behaved and independant. My sister…was not. Also, she was allergic to disposible nappies and had to have cloth ones, and while we were both allergic to our labrador Sam Sian was much more allergic to him than me. We had to give the dog up in the end – to a little old lady who needed a good dog like Sam – and I’m not entirely sure my dad really forgave my sister for that.

  We both grew out of the dog allergy though. By time we moved to Wales at seven (my sister) and ten (me), my step-dad had five dogs (two Jack Russells and three whippets) and later we got another two terriers. Seven dogs and not even a sneeze. My sister still had eczema but the allergies had gone and we were okay.

Hayfever and Hives

Rapeseed

So we were both fine for years; then when I was about fifteen we were on the beach and suddenly my legs broke out in hives and ended up being twice the size of normal. I remember taking a lot of baths in calomile lotion that summer as we tried to control the symptoms. My GP gave me a bunch of anti-histimines; which had the wrong instructions on them as I took them wrong ones in the morning and spent an entire month sleeping through my first few lessons of the morning. Not that I minded; I failed my a-levels anyway.

I was also referred to the dermatologist and two things happened. One, I passed out when they took my blood. I’d developed a fear of needles after a butcher took some blood when I was ten and I just fainted right out this time. My mum laughed. She was not the most sympathetic about my needle phobia. The other thing that happened was that my hives actually settled down thanks to the medication by time we got to see the consultant.

We never did find out what I was allergic too.

My hayfever really kicked in back then too. My mum sent me into the top field one weekend to pick the ragwort because it as poisonous to the horses. I got to up into the field, pick one plant and the allergies kick in. I started sneezing which was fine, I had a nasel spray but what I didn’t epxect was my eyes swelling shut.

It had never happened before and it hasn’t happened since. I had to walk down to the house holding my eyes open so I could see where I was going and tell my mum I couldn’t see.

I’ve avoided ragwort ever since. I’m also allergic rapeseed in the same way it turns out. Even if I’m in a car going forty miles an hour…

Bum Hives

Pictured: my arms (not pictured: my bum)

Since then I’ve only suffered from hayfever. I say only but it’s can make me miserable; I can sneeze solidy for twenty minutes at a time when it’s really bad. This year actually was the first year that my hayfever wasn’t too bad. No sneezing fits at all.

I should’ve been more suspicious.

At first the hives were small, and random. I thought they were bites atfirst because there were only one or two. But I’ve never reacted to insect bites before and then two became four became ten becaem twenty and it was obvious they weren’t bites. They were itchy and would last a day and be gone again. And the chloramphenamine would work and I went to America armed with anti-hisitmines.

Then we did some laundry using tide and some bleach and I reacted badly to my jeans. My legs were really itchy  and hives both grew in size and amount. But when we got back home and back to our usual detergent it didn’t get better. It got worse and the hives started to spread.

To my bum.

Okay, so they”ve spread everywhere and they are really itchy. On top of that when it gets really bad it makes me feel ill. I get a bit nausus and generally feel sick. I can sleep from all the itching and I think that make sit worse. I’m willing to admit there is definitely a streess componant in there somehwere.

Accident and Emergency

Oh boy…

So I went to the doctor and he gave me some pom (presrciption only) anti-hsitimines – fexofenadine – and some steroids to try and stop the reaction in it’s tracks. I took all five tablets as soon as I got them (it was around half nine) and carried on with my day. I felt a bit funny (dizzy) but carried on as best I could at work.

I went to bed itchy around the face but mostly okay.

I woke up with my face swollen and itchy. My lips and chin in particular were about three times the usual size. I felt like Jimmy Hill doing duckface. I got up and dressed for work anyway but when my wife and best friend who was visiting at the time saw me they told me to call NHS Direct. By then I was struggling to talk and starting to find it a little hard to swallow and the nurse suggested I go to A&E.

Thankfully, our friends hadn’t left for their trip to Cardiff yet so Al came over and drove us to the hospital. Who gave me s different steroid and more anti-hsitimine – intravenously! They put a canula in me and pumped it straight in. Between the two drugs I almost fell asleep in the hospital. It was midday before they let me go and I went home and pretty much slept until six. Even then my face didn’t go back to normal til the next day.

Since Then

In the two weeks since then my hives have been up and down and I odn’t know why or what sets them off. More mornings I’ll wake up covered in hives and they won’t clear until well into midday. Some nights I can’t sleep for the itching and the hives can appear anywhere. There’s no pattern. Arms, legs, hands, face. My bum seems to be particulary subseptable to hives.

I’ve been back to the doctor, of course. More steroids and some omeprazole for my stomach because they make me feel sick. He suggested a different anti-histimine and I explained to him that if’t savailable over the counter I’ve tried it. In various amounts and combinations. After reasurring him as to why I have so many anti-histimines (I have hayfever and work in .a pharmacy) he finally decided to refer me on to the dermatologist.

So that’s what I’m waiting for. In the mean time I am preparing; I’m making an allergy diary. Food I’ve eaten, reactions, wash days; anything that might give the doctors a clue as to what is causing this.

One thing I know is: If it’s soly stress-related I am screwed.

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[rheasunshine]

As I delve a little into what happened yesterday during my second half infusion of Ocrevus, I want to be very clear that “weakness” is not at all meant to be a taken as derogatory, or a stand-in for failure.  I do not intend “weakness” to bring up feelings of inadequacy or defeat.

Weakness, in this piece, means vulnerability, means softness, means disarmed – and the context of these words are meant to evoke in us the power of our humanness and to speak to the testament that though we are all fragile, that fragility bonds us together and opens up the pathways for empathy.

As I wrote about in my last piece, my decision to start Ocrevus was not an easy one and the long-term side effects were scary and the short-term ones turned out to be terrible.  This all comes with the territory of long-term disease management and medications.  So I won’t re-hash that and I’ll start with yesterday morning.

(Full disclosure, as I’m writing this, I’m currently basking in the warmth of 7.5 mg of Vicodin, 50 mgs of Benadryl, plus the haziness of sheer exhaustion.  Also, my skin is burning at a level best described as “infuriatingly distracting” and I have no feeling in either of my legs, so every once in awhile I’m taken out of writing mode to try to figure out how my laptop is floating in front of me because I can’t see the lump of legs beneath the blanket and so the whole “out of sight, out of mind” comes in to play.)

Knowing that we would have to leave for Duke at 5:30 am on Tuesday morning, I went to bed at 7 pm Monday night; not surprisingly, I woke up at 1:45 am, anxious and pissed.  But I got dressed, combed my hair and took a “Let’s Do This” selfie in an attempt to get myself pumped up.  I was thinking I looked pretty good for 2:30 am, especially since I was fighting a panic attack and couldn’t take anything for it (so there would be no interactions with the pre-medication they give you at the infusion center).

We headed out right on time, and despite the Tropical Cyclone warnings, there was only a light rain falling.  Thommy and I took the obligatory “WE’RE ON A ROAD TRIP!” photo at the first red light we came to, and then he took an adorable shot of the two of us once I inevitably passed out in the passenger’s seat.

Durham rush hour traffic was reliably crazy, so we rolled up to Duke Hospital with 15 minutes to park and check-in.  While I nervously waited for them to call my name I couldn’t help but notice the obnoxiously optimistic vending machine taunting me.  Similarly to adding the words “in bed” to the ending of fortune cookies, I sometimes like to add the words “my ass” to the end of inspirational quotes.  In case the image is too small for you to read, let me assist you in recreating what I read in my head yesterday morning as I waited for the IV toxicity:

“The human spirit is stronger than anything that can happen to it … my ass.”

Despite my obsession with quotes and my belief in their ability to empower and embolden us, sometimes the only thing that pulls me along in life is sardonic humor. Apologies to C.C. Scott.

Anyway, the appointment started out great – especially the first three things.  For starters, the scale was broken!! After just getting weighed in at a doctor’s appointment on Monday (yes, I truly do spend most of my life at doctor’s appointments), I was really not looking forward to it on Tuesday.  Most people dislike getting weighed in on those hideous contraptions anyway, but for someone with anorexia it’s an even harder proposition. Sometimes I do the weigh-in backwards, but most times my sadistic side takes over and I can’t avert my eyes.  I’m going to be writing a special post about my upcoming 10 year anniversary from Renfrew and one of the things I’ll be talking about is some ways people with eating disorders engage differently than regular folks with seemingly benign tasks.  For example, on the day before a scheduled weigh-in, I usually dehydrate myself and often times use a diuretic or laxative (despite the fact that I am chronically dehydrated and have diarrhea anywhere between 5-15 times a day).  I also wear as few items of clothing as possible.  This is much easier to accomplish in the South, but regardless of the fact that I am always cold, I usually wear shorts and flip flops to appointments so I can take them off before stepping on the scale.  At the infusion center, none of these preemptive steps are possible because those places are kept at what seems to be “just-below-freezing”, so I’m forced to wear jeans and shoes.  I digress: I didn’t have to get weighed in.

The second good thing was finding out that they try to keep you with the same infusion nurse for sake of continuity of care.  I loved my nurse the first time and I was ecstatic to be back under her care.  The last positive to happen in quick succession was the fact that she was able to get the IV in on the first try.  Last time, it took 3 pokes (plus the delay of waiting for the “IV Team” to show up).  Then, things started to take a turn for the worse.

Despite assurances last time that were going to double ALL my meds to start (including the Benadryl, which is a god-send during these infusions because it either knocks you out or keeps you in a “I Don’t Give a Fuck” haze), I was informed that only the Pepcid and the steroids would be doubled.  That was the first time I wanted to cry in the infusion chair.  I held it in.  I dug in hard, gritted my teeth, focused my energy and willed myself to stay ahead of the thundering rumble of disappointment I could hear building up in the background.  Thommy must have taken a picture at this moment, which I didn’t see until later, but perfectly captured the internal pep-talk.

And then he asked for a picture, grinning.  I tried to smile back.

  Then, as my nurse administered the normal dose of Benadryl, none of the twilight-like sedation that had blissfully overcome me during the first infusion took hold.  It might as well have been saline.  Again, the tears swelled up from my gut to the edges of my eyes – but I blinked them back down and just let the crashing wave of disappointment and frustration wash over me.  All my senses and emotions were so heightened that it felt more like drowning than washing, but I didn’t want to give up on the day so early in the process.

The day marched on.  Thommy did some work and I mostly stared ahead at the wall, or occasionally at my phone, but mostly I just looked at the IV.  A little blood had started to flow back into the tubing, a hazy mixture of red blood and opaque medicine creating a pink swirl in the line.  I don’t know why it was mesmerizing.  Something about blood leaving my body was calming; it was just the smallest amount, really, but it was beautiful.  It didn’t even scare me that I wished it was coming faster, or that the tubing wasn’t there, or that the earlier moments of “washing disappointment” turned to a wistful hope that the droplets of blood would turn to tiny streams, then currents.  Visions of crimson liquid on pale skin lulled me.  It wasn’t the meds but this vision that acted like the Klonopin I hadn’t been able to take earlier, and my eyes closed.  Thommy must have looked up from his laptop shortly after this and captured with his phone what must have seemed to him like a momentary respite from the struggle and a rare moment of calm.  It was.  But for all the wrong reasons.

***

As we hit the mark in time where I had experienced a reaction during the first infusion, I was ecstatic to realize I wasn’t having one this time.  I stubbornly decided (as one does when they think they can control everything around them) that I was NOT going to have a reaction this time and we were going to get out of there on time, beat the Durham rush hour and be back home after “only” 12 hours.  It was not to be.  30 minutes later when they once again bumped up the infusion rate, I started to get the faintest tingle around my ears and the outline of my face.  Then a little on my neck. I tried not to think about it; I certainly tried not to touch it.  I didn’t want to draw any attention to myself while surrounded my hawk-eye nurses and an even more attentive husband, who for reasons that entirely escape me, seems to actually like looking at my face.  I again tried to convince myself the increasingly hard to ignore burning was simply a matter of psychosomatic manifestation.  No allergic reaction to see here.  Maybe if I pretend to sleep, no one will look at me.

Then I coughed.  Just once.  But Thommy looked up.  I shook my head nonchalantly: “I’m fine, just a tickle, it’s fine.”

Then another cough, deeper this time: “I’m fine,” I laughed, “seriously, go back to work.” Then 3 more in quick succession, harder and rumbling, ones that forced my body upwards in the chair.

Fuck.  Me.

After 2 minutes of “Should We Get the Nurse” ping-pong, he poked is head above the nursing station.  I could hear the mumbling and I shot Thommy the coldest death stare I could muster and like a mother scolding an insubordinate child, I mouthed “SIT. DOWN.”

“Never mind, she’s ok.” Thommy said with a sheepish chuckle.  It was his turn to try to laugh it off.  But it was too late and here she came, arms crossed, smiling.  It wasn’t my nurse (she was on lunch), but one that had remembered me from last time and had come over to say hi when we first got there.  “Good to see you again,” she had said.  She was young and very pretty.   It’s strange, but even after just two visits, they seem like a family to me.

“What’s going on?”

“Nothing,” I laughed, waving my hand in an attempt to shoo off the inevitable.  I try to act like the smartest person in the room when in medical settings, like it simultaneously makes everyone up their own game and also allows me the upper-hand.  I do it because pretending I’m in control is the only way I’ve found to survive all this shit.

I don’t remember exactly who said what, but among the three of us, words like “itching”, “just a little irritation”, “cough”, and “I really am fine,” got tossed around.  No dice.  In quick succession, 3 nurses and the PA who oversees the floor and is probably the sweetest person I’ve ever met in a medical office were standing and sitting around me.  Then I started to fucking cry.  Not sobbing, not hysterically, but a stifled stream of tears finally made their way out of my eyes and down my already red and itching face.  The nurses and Thommy tried to console me, thinking what, I’m not sure.  The darker part of my nature thought maybe they believed I was weak – easily rattled – being a brat.

I doubt anyone actually thought that but those were the assumptions pounding against my skull as I tried to explain that I was only crying because I didn’t want to stop the infusion, I just wanted to get through it like (seemingly) everyone else did and go HOME. I wanted them to understand that my body does not know any other mode than “self-sabotage.” It is a betrayer.  It lies and it breaks and it defies logic.  I wanted them to ignore what they were seeing, go against all ethical and practical guides of medicine and just let me have my reaction in peace and get the fuck out of there.  As I explained that, minus the expletives, the PA sat down next to me and placed her hand on my knee that was huddled up next to me as I did my best to place myself in the fetal position in the chair.  Her eyes were the warmest shade of brown, and empathy and sympathy shot out of them like laser beams set to a better frequency than mine.  Excitedly she said, “we won’t stop like last time!! No, no…” she comforted, “we will just stop the drip while we give you more Benadryl, more Pepcid and some Allegra, and then I promise you we’ll start right back up.”  There were some hesitant, doubting looks on the faces of the nurses surrounding her.  The PA must have noticed that too because she added – “I’ll start it back up myself if I have too.”  I agreed, but kept crying.

They all started shuffling around doing what had to be done and within a few minutes, my own nurse was back.  They explained to her what had happened.  They tried to explain why I was upset.  I started to defend myself, but she stopped me.

“Of course you’re crying.  You’re tough and happy for as long as you can and you do what you have to do and then all it ever takes is one final thing, the straw that breaks the camels back, to put you over.  It’s not pain, you can handle that; it’s just frustration at one more thing not working out the way it should and you just have enough.  You’re ok.”

I cried harder.  She actually fucking got it.  I’ve known her for a total of maybe 18 hours in my life and she completely understood the secret language of my tears in that moment.

They infused more meds and I watched the clock tick.  And then, when my time was up, and every nurse was with another patient, the PA (who works in administration and oversees the floor, and who was wearing high heels, a skirt and a blouse, but who had promised me that this little setback wouldn’t get me off track to go home on time), found gloves and started my drip back up herself.

The state of medical care of this country is currently broken.  I know this because I am a professional patient.  But the level of care I’ve received at my infusion center, and especially at the hands of this PA at that moment, healed so many fractures for me.

I still had well over an hour to go when my nurse left for the day.  She came over to say goodbye and that she’d see me in 6 months.  She said a few things, all so genuinely sweet that I wanted to cry again.  Then she said “it was truly a pleasure being with you today.”  I could only nod.  When she left, Thommy turned and said, “she loves you.”

“Yeah,” I said, thinking about all the times doctors and nurses would fawn over Memere, even as she experienced the worst that hospitals have to offer.  “I learned that from Memere.”

***

In my ongoing commitment to showing how “real” complicated and ongoing illness and disability can be, I allowed Thommy to post a picture he took of me crying to Facebook.  We try to document as much of our lives as possible, and while most people who know me know that I’m incredibly open and honest about what all the colors of life look like, there are lines I try to draw.  I’m struggling with that right now as I’m drafting my Renfrew piece, because despite the trigger warnings and the explicit language I’ll use to shy away people who shouldn’t be looking at it, I know if they’re anything like me they’ll be compelled to do so anyway, and so I haven’t decided if I’ll use pictures to help illustrate what my personal weight and health struggles have looked like over the last 18 or so years.

When we finally got home last night, I kept looking at that picture.  I really had to fight the urge to take it down.  I still think displaying vulnerability, depression, anxiety and self-harm are ways that help me fight against them.  I know not everybody feels that way and I do worry maybe it’s too triggering for people.  And maybe I’m delusional, but I do feel that if someone is battling their own demons in secrecy, and maybe feels like no one else understands, that they might see one of my pictures or posts and realize that weakness does not have to equal defeat or inadequacy or failure.  Sometimes – hell, most times – weakness is permission to feel vulnerable, hurt or broken while simultaneously seeing the strength that all those feelings require.  It is permission to be human, and to let others know that not everything they see or read from people they consider “strong” is the whole story.  Strength requires too much energy sometimes; it needs its’ counterparts to be whole.  When someone tells me I’m strong, I want them to know that, while it’s often misquoted and not used in accordance with the original source material from “A Farewell to Arms”: we are all broken, that’s how the light get’s in.

So today, as I sit here, I am bloated from the steroids and terrified about how much worse it’s going to get in the coming weeks. I am in incredible amounts of pain radiating from all over, and both legs are numb.  I am starving, but I won’t eat.  My face is broken out in hives (as are my neck, chest and shoulders), and I am dizzy and nauseous from all the medicines.  I am worried about money because our car just needed $1,100 worth of repairs.  I am feeling like a horrible friend and daughter because there are things I’m supposed to be doing for my friends and family that I just can’t.  I feel like the “World’s Worst Wife” (a title I bestow on myself often) because Thommy is stressed and anxious and I can’t be as attentive or patient as I should be.

I am feeling my humanness today: hard.  I am still crying.  But I’m urged to remind you that while it’s not necessarily fair to feel this way, we are okay.  And if you need to reach out, reach out.  And if you want to share your struggles with social media but worry people might think you’re being “dramatic,” tell that voice to shut up and share what you want.  You have no idea who it might help.  Or how it might help you.

What’s the point of being strong if you can’t define strength on your own terms?

What’s the point of struggling in silence because you’re worried about what other’s might think? People who would turn their backs on you deserve to be walking away.

What do you need today?  Ask yourself – then ask for help if you need it.

If you’re doing OK today – ask someone else what you can do to help them.

Results may vary.  You may make someone’s day.

Or you may save it.

  In strength and solidarity,

Rhea

    In Defense of Weakness As I delve a little into what happened yesterday during my second half infusion of Ocrevus, I want to be very clear that "weakness" is not at all meant to be a taken as derogatory, or a stand-in for failure.  

[treehuggerkilljoy]

So I'm not allergic to much in this world. I was just cursed with this really bad allergy to mold. Guess what I was exposed to at work today? Yeah, you guessed it, mold. Now, what happens when I'm exposed to this toxic substance? I can't fucking breath right to the point that my asthma kicks in and it gets to the point that I need to get to the doctor. I get pumped full of steroids and they keep watch over me for an hour or two. Another issue... we're expected to be short staffed already tomorrow. So if I do have the reaction to mold like I did when it was infecting my house when I was 6, I won't be able to work. Meaning, our missing one person problem will turn into missing 2 people. I also need to be at work because I need money. So here's hoping that I wasn't exposed to it much so I'll be fine tomorrow.