Quick health update

For those of you following along at home…I did get the Xolair shots on Monday. But as Xolair doesn’t kick in immediately, I’m still taking Prednisone as well.

I had a really bad outbreak of hives Tuesday morning, but since then, I’ve had fewer and fewer. When they appear to be gone or nearly so, I’ll start the Prednisone taper. But that makes me nervous, because I’ve had rebound reactions before, and they’re really  not fun. So I’ll be slow and steady about it, even though I’m rather impatient to be steroid-free.

My relationship with Prednisone is definitely love/hate. It does its job well, and I’m thankful it exists, but the side effects just suck when you’re stuck taking it long-term.

I’m honestly just so ridiculously grateful for Xolair – it was approved for asthma patients in, I believe, 2003 or thereabouts. (I can’t imagine having asthma so bad that no other drug can control it. How relieved must those people have been when Xolair got approved for them?) It was approved for people with my condition in March of 2014. (And I’m definitely happy about that.)

Right now, studies are being done to find out who else could benefit from this drug – it’s thought that other people with really bad allergy issues might eventually be cleared to use it as well. If it turns out that this drug helps people with allergies or inflammatory issues or hives/swelling that are beyond the control of any other drug, and/or potentially life-threatening? I mean, that would be amazing. So I’m hoping current studies eventually find that this drug would be good for others as well.

Thank Science for this drug. I’m seriously grateful to every researcher, every lab tech, every clinician, and every trial study patient who made this drug a possibility. I’m grateful for all the studies still being done to see who else could benefit from this drug. I’m grateful to every journal that’s ever published those studies.

Keep the science coming, y’all.

How to celebrate a narcissist’s birthday in 5 easy steps

Today is my egg donor’s 70th birthday, and I have given her the greatest gift that I could possibly have given: Nothing. No card, no email, no acknowledgement of any sort. This is way better than any sort of nod to the event would have been, as it allows her to do what she likes to do best – play the victim.

Continue reading “How to celebrate a narcissist’s birthday in 5 easy steps”

Damn stupid hives.

Yesterday’s guarded optimism about the state of my hives was…well, optimistic. Turns out, they got exponentially worse in the afternoon, and all through the evening. I’m now head to toe covered in hives, and have hives in places you don’t want to have hives. Namely the pubic region (CROTCH HIVES!) and the anal region (ASS HIVES!), so sitting and using the bathroom is fun. I also have a triad of large hives sitting on my spinal column, they’re all over my arms and legs – and when I say legs, it’s not knee down like last time. It’s crotch to toes hives. They’re also in my hair and on my face and on my hands.

In short, I look like the victim of a medieval plague. I’d post pics of the worst of them, but the worst and most entertaining of them are in places I’m not going to post pics of on WordPress. Just believe me when I say I look like I have the venereal disease from hell, so sitting is fun. (I nearly titled this post ‘Crotch Hives: Kink or Inconvenience?’)

But to satiate the curious, here’s my swollen finger:

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And here’s what’s happening to my elbow and face…

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You can see the arm swelling and at the very bottom, you can see the tip of another hive. If you look at my face, you can see the hive next to my nose. You can kind of see the ones next to my eyebrow and under my chin. If you look really closely, you can kind of see two of the three tiny light dots across my chin…that’s not acne. Those are itty bitty hives that, throughout the day, will grow and swell up, so that by tonight, I’ll be doing my demented chipmunk impression again.

(I just realized, you know where I’ve never gotten hives? On my tattoos. I’ll get them around the tattoos, but never on the tattoos. Odd…)

Here’s something new as well – these hives actually hurt. The elbow, the knees, and the back especially. And I’ve got another day or two of swelling up before they begin to subside, if the pattern holds. However, since these are worse, but started out so small and spread slowly at first, then just exploded everywhere…I’m not sure the pattern I’ve been experiencing is something I can count on anymore.

That said, I’m remaining stubborn and have decided to wait this out and not go back on steroids. I should be close to getting the Xolair – hopefully another week or two – and the problem with prednisone is that last time, I had rebound reactions the first few times I tapered off. (If you’re curious, you can read about rebound reactions here.)

This round of hives is bad enough that I had to make the call to cancel some travel plans. I *really* didn’t want to, but the only way to make sure I don’t end up having an emergency situation is to dose myself with steroids, and since I know the steroids can cause other problems. I have side effects from them, it’s not just the rebound reactions. Plus I have a really short fuse on higher steroid dosages…and just a lower tolerance level for any sort of stress or inconvenience. Flying while on steroids is likely not a good idea, especially since I fucking hate flying. I hate airplanes. I use them, because I refuse to be held back by irrational fears, but stress + steroids + airplane might end badly for me, as might stress + hives/swelling + airplane. There’s no scenario in which flying is a good idea.

And without steroids…well, if my tongue or throat are going to swell up, it’s an outbreak like this that’ll do it. My fucking ASSHOLE is swollen…my pubic mound is so swollen I’ve got the camel toe from hell…so who’s to say my tongue won’t be next?

So this, ladies and gentlemen, is an example of how issues caused by chronic illness can fuck up your life. I was going to fly to Ohio to attend a wedding this weekend. These are people I’ve known for years and laws being what they were, they weren’t legally able to marry until recently. I’ve been waiting and hoping that that would change, and it finally did, and they decided to go for it…and I can’t go because of FUCKING HIVES likely caused by my FUCKED UP IMMUNE SYSTEM. Luckily these friends aren’t groomzillas and totally get why flying when you’re high risk for swelling-related respiratory issues is a bad idea. Plus it’s not right to put myself in a position where I could potentially have a medical emergency and be a disruption to their day. The only disruptions they should be dealing with are drunken wedding antics, not the bitch from Colorado with the swollen face who suddenly can’t breathe.

But I’m frustrated with the situation. I’d rather be in Cleveland celebrating with friends, not at home nursing a body full of hives. Especially not ASS HIVES. (I feel like if you have ASS HIVES, that needs to be shouted, thus the all caps. ASS HIIIIIVES!!!!!)

State of the hives

For those following along at home, I have Idiopathic Urticaria, which means “you’ve got chronic hives but we have no idea why.” Could be the auto-immune issues, could be my apparently pretty severe grass pollen allergy.

I think it’s the former, because the hives started in winter and I’ve never had hay fever. But it’s possible to have a pollen allergy and never have hay fever symptoms – unusual, but not impossible – so who knows for sure.

Doc pulled me off Xolair in May, which was what was keeping the hives in check, and they came back. I had two weeks of massive hives and swelling, but this week things improved. I’m still getting hives, but not as many and not as big. The swelling has also not been as bad.

So maybe the drug cocktail I’m currently on while waiting to restart Xolair is actually doing something. The problem is, hives are hives, and at this point, I’m not sure if the meds I’m currently on are helping, or if this is just a fluke.

Last time this happened, not knowing why I was swelling up, I went to the ER and ended up on Prednisone. Trying to get off pred caused rebound reactions that antihistamines couldn’t control, and it was only with the Xolair that I was able to get off it. This time, no pred, and the antihistamines might be working sort of.

I guess I’ll take it? But I remain unconvinced that I’m not on the verge of a full-body hives and swelling experience again. The little ones might just be toying with me. Throwing me off my guard. Lulling me into a false sense of security.

They’re cute though. Look how cute.

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#Narcissism is not just about vanity

Here’s a great post that explains what narcissism actually is – because it’s not just about vanity. The word “narcissistic” has a different context in popular thought – we hear this word and think of someone who’s over-the-top vain and self-absorbed. And that’s certainly an element, but collectively, people don’t realize how horribly destructive narcissistic personalities actually are.

The post I’ve lined to clarifies what a narcissist actually is, how they operate and what they feed off of, and the devastating effects they can have on others.

And so it’s back to Xolair I go

Looks like my chronic hives can’t be controlled by multiple antihistamines without either Prednisone or Xolair. I went from 1 pill a day to 8, and still the hives continue to appear, and are getting worse with each outbreak. Since pred isn’t a drug you want to be on long-term, my doctor started the process for applying for Xolair again.

Xolair isn’t a drug you can just get a prescription to and go fill at your local pharmacy. It has to be specially prepared by a specialty pharmacy, and it’s extremely expensive. So the first step is to order it, and put in an application/insurance paperwork that should get the monthly payment down to around $300/mo. Then there’s a second aid application that will lower that even more which I also need to apply to. If I’m lucky, I’ll get into the $5 copay program. Since I had to disclose my total household income, I’m a little concerned that I might not qualify. I’m not sure what their cut off is.

So worst case scenario, I’ll be spending around $3600/yr for this drug. Best case, $60/yr.

All so that I don’t need to deal with this:

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Now, that small hive on my face will grow throughout the day and will end up much like the hive on my right leg. So by the end of the day, my face will be really swollen. Hard to say what my fingers will do; sometimes the hives there stay small, sometimes they expand and my fingers get massively swollen. That’s the thing about hives – they love to surprise you.

However, Xolair isn’t necessarily an easy answer. It can’t be self-administered, so once a month for an indefinite period of time, I’m going to have to go to my doctor’s office to get an injection. And they’ll charge me $35 each time I go in, so actually my best case scenario for this entire situation is $480/yr.

Here’s the other thing about Xolair. I get sick on injection days. They do Xolair shots at certain times of the day, once in the morning, and once in the afternoon. So I’ll end up having to take a half day every month, get the afternoon injection, then go home, because I get flu-like symptoms within an hour or two of the injection. But I’m always fine by the next day, so no big deal.

Of course, there are other side effects…such as hair loss. Not everyone experiences this side effect, but I do. I was on it for 6 months last time, and by the second month was losing a lot of hair. Luckily I have a lot of hair, so it really wasn’t noticeable to anyone but me. However, being on this drug indefinitely means losing a lot more hair, to the point where it may be noticeable.

And you know what? I don’t even give a shit. I’ll cut my hair super short and get a damn wig if it gets that bad. Maybe it will; maybe I’ll adjust to the drug and the hair loss will taper off. But I’d rather deal with hair loss than hives, so in my mind it’s a fair trade. I can function adequately with short hair, no hair, or a wig. I can’t always function well with parts of my body covered in hives so bad that the cause major swelling. And the itching. Last week it wasn’t terrible; today, I’m being generous with the Cortisone-10.

Hair loss also won’t kill me. The hives affect different areas at different times, and can appear on the tongue. Tongue swelling can be life threatening. I carry an epi pen everywhere because of this. I’d rather not have to hit myself with an epi injection, because that means a hospital stay. When you get that big of a dose of epinephine, you have to be monitored afterwards.

So that’s where I am. Just dealing with the day to day until my Xolair is ready. Getting some bloodwork done in the meanwhile, so I can see where certain markers are before I start treatment.

I’m grateful for Xolair, but I have lingering concerns about having to go on the worst case scenario drug. I can’t help but wonder what will happen if it ever stops working. I’ll likely inquire next time I see my allergist, since it looks like I’m going to be a long-term Xolair patient.

I will also continue to put my faith in science. Xolair is a fairly new drug, and was developed for people with really bad asthma so that they don’t die. Science will continue to develop new drugs, and big pharma will continue to want to charge lots of money for life-saving drugs, so there’s no doubt in my mind that someday, I’ll have options other than Xolair.

I’m mainly just wondering what happens between today and someday. It’s a question I’m sure the asthma patients must have as well.

Midnight musing…

[From my private journal…]

One of my favorite writers is Joyce Carol Oates. She was here in Denver a few years ago, and I had the opportunity to hear her speak – something I’m eternally grateful that I got to do. She’s tall and sleek and rather elegant, at least from afar. Instead of talking about herself, she talked about writing, and what makes it great, and why it still excites her. She was enthralling to listen to. I was about as enraptured by her as I’ve ever been by anyone.

After her talk, there was a book signing, but I’m not much for signings or meet and greets. I may love you fiercely, but I’ll do it from afar. I may thrive in clutter and use lip balm liberally and cover my body in tattoos and eat whatever the hell I feel like eating, but at the first sign of love, I scurry away. I watch it from a safe distance, always ready to retreat.

This is good for the celebrities I love, the bloggers and teachers and mentors I follow, because it means I’ll never approach them or bother them with my ardor. But it’s rather inconvenient for people who try to love me back.

A room of one’s own (Or, what it means to an abused person to have their own space)

I finished up my reread of Winterson’s memoir Why Be Happy When You Could Be Normal? last night. One of the things I connected with is the fact that the house Winterson grew up in didn’t necessarily always feel like a safe space – or even somewhere that she belonged. Reading her commentary about how she was treated in her home as a child, and how she felt about home, impacted how she feels about her own spaces as an adult made me realize that that’s something I have in common with her.

In my case, my home is very much a safe space, and very much lived in. There’s clutter in my house – I’m a cluttered person. At my house, you’re allowed to put your feet on the furniture. It’s okay if the dishes sit overnight. A little bit of dust won’t kill anyone. The dogs are allowed on the furniture. You can eat in the living room, or anywhere else that you want to eat.

Lived in is the key phrase I use when describing my space to people. My house does not exist to impress other people – it exists to be a comfortable space for the people and animals who inhabit it. I don’t care what other people’s opinions of it are. My house is not for them – it’s for me.

Continue reading “A room of one’s own (Or, what it means to an abused person to have their own space)”

Fun with idiopathic urticaria!

Okay, since I have to deal with parts of my body swelling up, I might as well learn y’all something. The fancy medical name for hives is urticaria, which sounds like an evil sci-fi character of some sort.

Idiopathic is medical-speak for “we don’t have the slightest fucking clue what’s causing this.”

Now, if I have Lupus, how could they not know, right? Well, they can’t definitely prove that the swelling is caused by the Lupus – all they can do is rule out allergens or toxins or irritants. Which they did, thus the “idiopathic” diagnosis.

Everyone thinks of hives as small red bumps, and they are…but they can also get quite large and spread out. And hives can also just means swelling. Here’s an example – my ears like to swell up.

Here’s my normal left ear right now:

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In comparison, here’s my swollen as hell right ear:

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And another angle…

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Not the best pic, but you can kind of make out the redness and swelling behind it. Because it’s spreading.

That’s a hive, just as much as a small red bump is a hive. And this sort of urticaria can happen anywhere – I’ve had multiple parts of my body swell up. My entire face, my knees, ankles, fingers, etc.

So when we talk about hives, we might be talking about something small, or something quite large.

In my case, they started small, and are getting larger and larger. If the pattern holds, various parts of my body will swell up for a while, then it’ll clear up, then something else will swell up. Soon, several somethings will swell up, until it gets so bad that most of my body is covered in swollen patches.

The meds I’m on seem to knock out the tiny hives – those small red bumps that most of us think of when we think of hives. They’re not doing shit for these larger patches of swelling. Today, my left hand and right ear were swollen. The hand has improved through the day. Yesterday, my hand, elbow, and ankle were swollen. So the swelling moves around from day to day.

My guess is that I’ll end up back on Xolair,  but we’ll see. Maybe the meds I’m on just need time. I’m taking it day to day at the moment.

Lupie problems

So my hives are completely out of control again, and I got hit so hard with fatigue this afternoon that I had to leave work early. I came home and slept for 3 hours.

I’ve been trying meds again that didn’t work when this happened last fall – the difference being that by the time I got to an allergist last October, the ER had already put me on prednisone, and that complicated things. The hope was that the antihistamines would work this time. They’re not so far, and I’m not hopeful.

I’ll likely end up back on Xolair, which I can’t afford and need to apply for aid to get. I got aid last time so not worried about that.
What does worry me is that it seems like I’m going to need the worst case scenario drug. So I think things like, what if the lupus never lets up off attacking my skin and I become a long-term Xolair patient? What if Xolair stops working? What about the side effects? It makes my hair fall out. 

This is about the point where I start to get despondent and wonder how the hell I’m going to be able to be a grad student and work full-time and have Lupus. So this is also the point where I’m grateful for all the lupie and chronic illness blogs I read.

Seriously, these bloggers give me life. Like, none of us asked for this shit, but here it is, and we have to keep living. We have to do our best to not let it totally derail us. I hate warrior rhetoric as a rule for chronic illness or bad stuff like cancer, but at the same time…I have these inner reserves of tenacity that I need to tap into. I have a lot of fight in me, and that’s exactly what I need.

People who share their experiences do help me. On days like today, it helps to be reminded that its okay to not be strong all the time. It helps to be reminded that we all have days like this.

It helps to hear them say, “Its hard, and we all get discouraged sometimes, but don’t give up.” It helps to have encouragements and positive affirmations.

I feel awful today, but I’m not going to wallow in it. I’m frustrated now, but tomorrow morning, I’m getting up and I’m dealing with this damn flare. That means trying some med combos and being patient for the next few weeks to give them a chance to work. 

Ultimately, I think I’ll end up back on Xolair. So, okay – there are two levels of aid to apply to. I got that. I’ll need monthly injections and I need to get them at 1pm – my boss will understand, so I’ll talk to him. I have plenty of Cortisone 10 to get me through the day, so that’s covered.

The fatigue, well…I need to keep recognizing when my body needs to rest. My boss has told me I can go to reduced full-time if my health requires. I’m trying to avoid that…but it’s there if I need it. 

I don’t like this…but I got this.I can do this. 

Finding yourself in the words of others

Many connoisseurs of literature and poetry have waxed philosophical about how art imitates life, and how we find ourselves in the art we create. But as I get older, I find that I don’t just recognize who I am in the words of others, but also who I’m not – or not anymore.

I’m rereading Jeannette Winterson’s memoir called Why Be Happy When You Could Be Normal?, which was gifted to my by a friend several years ago because he knew I’d connect with it. I read it through for the first time in a matter of hours, underling sentences as I went that were eerily familiar – the sorts of sentiments that I felt in my gut because they weren’t just sympathetic, they were truths. But in between my outlines are vast expanses of words that I can’t relate to, words that describe experiences that I’ve never had and never can have. It’s the blending of the two that makes this book so attractive – how so many poignant fundamental truths of my experience are being described by someone whose experiences, while similar, had enough differences to make the discovery of the startling similarities that much more exciting.

I returned to that book this week, because I’d been meaning to for a while, and it seemed like time.

This book is an account of Winterson’s childhood and coming of age – she was adopted by born-again Christian parents, had a father who was largely absent, and a mother who was distant and strange. It describes the effects of not being loved, and how realizing that she was a lesbian compounded the issues she had with her mother, that ended in her leaving home at 16. By 25, she was an award winning novelist.

Continue reading “Finding yourself in the words of others”

I’m allergic to outside.

So I got some allergy testing today that the docs were unable to do when all my skin-related issues started up due to the drugs I was on at the time.

I learned that I’m allergic to half the goddamn state. Like, pretty much everything that grows or lives on or around my property, I reacted to. So now I’m sitting here like…

flowers

Not really, though. I love flowers, and intend on continuing to leave my house on occasion, despite the fact that I’m basically allergic to outside.

Oh, and the hives? They’re mostly likely not connected to the allergies. The hives are most likely immunological. They say “most likely” because they can’t definitively prove it, but there’s no longer question of the hives possibly being an allergic reaction. They’re immunological in nature.

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Damn Lupus! *shakes fist vigorously at immune system*

So I’m back on two meds to help control the hives. Affordable meds. We’re trying to avoid going back to the $300/mo injections if we can because no thanks. Crossing my fingers that the affordable med combo will get the hives under control this time. It failed to last time, but the hives were much worse, partially because the prednisone taper failed twice. But that happens with pred…it’s hard to get off of, took me three tries…so the hope is that these other meds will work on their own now since I did mange to get off the pred, and have been off of it for 6 months.

I’m not treating the allergies at this point, because they’re not actively bothering me. Just have to resist the urge to roll naked in the grass or lick tumbleweed or sniff rabbits. (In other words, there go my weekends.)

I used to love summer.

I’m not loving this whole fatigue triggered by high heat thing. I ventured out of the house both yesterday and today, which resulted in me having to lay down when I got home each time. Summer is hard on the immune-impaired. I’m not a big fan of being cold, but I find I’m at my best, energy-wise, when I’m slightly chilled. We’ve had a steady streak of 90 degree + days here in Colorado lately, along with a lot of extra rain because we’re also experiencing climate change…so it’s been hot and slightly more humid than I’m used to. And my body does not like it one bit.

However, I did manage to score some magical jewelry for my pains…

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They’re probably not actually magical, but they remind me of something magic. Or perhaps the fatigue is making me more whimsical than usual.