Bubble Gum and Barbie Doll Shoes

Today I had my annual review at work. Last year’s review didn’t go very well. My supervisor had only worked with me a few months and, since he is male and his his late 50’s, he immediately formed the opinion that I was stupid because I’m younger and female. There were lots of comments in my review about having too many doctor’s appointments and needing to “learn more” and “contribute more”.

This year, I decided to show him how much I do know by speaking up often. I also decided to share more about my health problems with him like what RA is like, why I’m going to the doctor, how dangerously low my O2 sat is when I get admitted for asthma, etc. I’ve provided doctors notes for appointments and absences as well.

All of this seemed to make a difference. This year there were no comments about my lack of knowledge, inexperience, or doctors appointments. He only had good things to say about me this year thankfully. I got high ratings and a 2.6% raise (out of a possible 2.8%).

Unfortunately gender bias is rampant in tech jobs. I’ve had to stare down bias and prove myself for 14yrs now and I know I’m not the only woman who does. I’m just glad I was finally able to get through to my supervisor that my head isn’t full of bubblegum and Barbie doll shoes. Not every woman is so lucky.

Hug an Autoimmune Person

The itchy, blistered, rash-o-doom is 90% better. That’s awesome. Still using the coconut lotion, shea butter, aloe, and essential oil blend 2x daily.

The bad news is that now I’ve broken out in a sunburn-like rash around my left eye. I spent the entire day answering questions like, “Did someone hit you?” and “What happened to your eye?”  At around 7:30P, both eyes were stinging so much that I had to lie down and close my eyes for relief. I use the same gentle eye makeup and cream I’ve been using for years so I’d be surprised if either were the cause.

Having an autoimmune disease means unrelenting sickness of various degrees 24/7. Go (gently) hug someone you know with an autoimmune disease for dealing with this sh!t day in and day out. It’s hard work.

Luke In Love…Among Other Things

To Eczema or Not To Eczema

Now that the itchy skin condition of doom is better controlled, I can continue talking about pretty much every other aspect of my life – like my inability to sleep like normal people, unraveling Luke the 12yr old’s depression, kids being kids, and work being work.

Before we start all of that, tonight I mixed raw shea butter with the DIY coconut oil lotion I’ve been using. It’s so nice! I’ve been out of the shower for 40min now and I’m not itching at all. The shea butter is very moisturizing and isn’t sticky. It also adds thickness to the coconut oil  which helps keep the coconut oil from dripping as I apply it.


 

One Hour of Napping; One Week of Recovering

Today was a moderate pain day. Considering I messed up my sleep schedule with a nap on Monday, I’m not surprised I feel awful today. Part of fibromyalgia means not sleeping well and part of RA is pain and fatigue. Combine the two and you get how I’ve felt all day. It feels a bit like coming down with the flu after a super strenuous workout. I can’t even afford a nap when I’m tired because one nap will throw off a whole week. Sigh…


 

Luke in Love…Among Other Things

(For the new readers: Luke is my husband Jonathan’s 12yr old son who suffers from depression, suicidal thoughts, and anxiety disorder among other things. He often confides me but asks me not to tell anyone which leaves me between a rock and a hard place.)

Last week, during Luke’s therapy session, I asked Luke about two things: why he talks about how stupid he (thinks) he is all the time and why he has stopped eating. Instead of handling the questions in any sort of mature or helpful way by trying to articulate his feelings, he chose to stare off into space and remain completely silent the entire session.

Really, Luke???

Luke has a girlfriend. We’ll call Luke’s girlfriend Cloe.

Today Luke told me his girlfriend Cloe is into self harm and one of Luke’s friends hates Luke’s therapist. Why does the friend hate Luke’s therapist? Because that kid went to a therapist he didn’t like…a therapist who is completely unrelated to Luke’s therapist. Gee thanks, jerk kid.

As someone with a history of eating disorder, I’m very knowledgable about the symptoms and habits of eating disordered people. Luke’s description of Cloe’s behavior – self harm, refusing to eat, etc – makes me wonder if Cloe is developing an ED. Perhaps she already has an ED. Anyway, Luke decided to stop eating lunch because Cloe doesn’t eat lunch. Argh! Show some independent thinking skills here, Luke! When asked, Luke’s explanation for refusing to eat is that he’s “not really a food person”. Never mind the fact that food is…oh…required to sustain life.

Luke has been obsessed with constantly talking to Cloe. He breaks the 2-hour-a-day internet rule to “secretly” IM Cloe from other computers in the house. “Secretly” is in quotations because, before Luke started sneaking IMs to his girlfriend, I installed monitoring software on the computers. I installed the monitoring software partly because I’m a computer geek who enjoys tinkering, but mostly so I could control the volume of streaming music without physically walking to the computer and using the keyboard to change the volume. Now the monitoring software is catching Luke breaking the rules. Do I just let it go or do I say something to Jonathan about Luke’s secretive rule breaking?

Parenting a preteen is a huge pain the arse sometimes.

Necessity is the Mother of…Skin Treatments?

My skin is finally somewhat better. The redness and itching is minimal now and the lesions are healing. Unfortunately the steroid creams I paid a pretty penny for after the dermatologist visit didn’t help. Desonide did nothing and Elidel, while reducing the itching and redness, caused my skin to break out in water blisters wherever the cream was applied. Since I applied Elidel to my neck, I’ve spent a few weeks awkwardly covering my neck at work as though I was covered in hickies…not a cute look.

It took a few days to connect Elidel with the blistering. I would apply Elidel, the itching and redness would decrease, then I’d have pin-head size water blisters throughout the area of application 72hrs later. I’ve since stopped all steroid creams including hydrocortisone. Hydrocortisone seemed to reduce itching in the short term, but increase itching in the long term. I suspect this happens because hydrocortisone is a bit drying and dry skin increases irritation and itching.

Since the recommended treatments were worsening my symptoms, I’ve concocted my own treatment to lessen my misery. I whip coconut oil in a mixer, add vitamin E oil, lavender oil, rosemary oil, sweet orange oil, and crushed aloe plant leaf.

The essential oils I’m using are therapeutic grade. I patch test each oil on my arm to ensure it won’t cause irritation before adding it to the coconut oil. Most of the products I’m allergic to are detergent and synthetic fragrances so I haven’t reacted to the natural oils thus far. My concoction seems to be helping more than any treatment I’ve tried and my skin is feeling and looking better than it has in about a month.

Late last week I ordered some raw shea butter and lactic acid to add to the whipped coconut oil. Shea butter contains vitamins that help fade stretch marks – a side effect of my numerous steroid treatments – and it reduces inflammation while moisturizing well. Lactic acid is used in pricey lotions like Amlactin to treat keratosis pilaris which is unattractive, but not a serious condition. Lactic acid helps exfoliate to remove the scaly patches of keratin buildup in the hair follicle.

I’ll patch test the new ingredients and we’ll see how this goes.

Is This Really Eczema???

Since visiting the dermatologist, I’ve been following the recommend eczema protocol. However, the dermatologist didn’t seem certain I had eczema although he diagnosed me with subdermal eczema.

The rash isn’t rough, the skin is not broken or cracking, and applying Vaseline seems to aggravate my skin instead of help. Also, my skin itches intensely – as in it causes me to lose sleep because the itch is so severe. While I don’t have patches of broken skin, I do have lesions. The lesions are shallow and about 1cm in diameter. I also have blisters – small fluid filled blisters which are independent from the lesions.

My hair is falling out.

I have a blister on my tongue.

The eczema therapies aren’t working.

Is this really eczema??? Do I have another autoimmune disease affecting my skin? My PCP believes that my skin rash is autoimmune and NOT related to eczema, which differs from the dermatologist’s diagnosis.

Meanwhile, I’ve switched back to moisturizing my skin with my own coconut oil cream recipe. It seems to be slightly more effective than vaseline at controlling the itching and it doesn’t leave a slimy, gooey film on my skin.  This is a maddening situation.

Being a Burden / More of the Same, Really

On Being a Complain-y Sick Person

I complain often. Well, I complain on this blog often. If you met me in real life, you’d be struck by how little I complain. When I do complain, it’s with a dash of silly sarcasm. I blog about my problems because I don’t want to burden my friends in real life. It is hard to tell who is really interested in hearing how you’re doing physically and who is just listening to be polite.

The only people I “burden” with complaints here are subscribers – people who willingly sign up for my posts- and thus sign up to read my writings. Many of my subscribers suffer in the same ways I suffer and its comforting to know we’re not alone. Especially because, when you have so many health problems, your friends and relatives tune you out so it is a frustratingly lonely situation.


 

Subdermal Eczema – More of the Same, Really

I’ve been following the dermatologist’s advice for five days now. You’d think I might be seeing an improvement, but not really. The skin on my stomach itches less intensely and is less red. The skin on my lower legs itches more intensely and is more red. Trading one area for another.

The film on my skin left by the myriad of products is not improving. I thought I’d try to give my skin a few days to adjust. Instead, the film is attracting lint from my clothing. I just don’t see how that is going to help reduce itching. Tomorrow, I’m using a wash cloth against doctor’s orders.

Desonide, the RX steroid ointment, is fairly useless. I should now be applying the ointment every other day and I honestly can’t tell a difference when I apply it and when I do not. The Elidel samples seemed to make some difference. I covered my stomach in Elidel ointment and it’s itching less. Covering myself in Vaseline nightly is no more effective than using the coconut oil blend I created. If anything the Vaseline is not helping because it adds to the slimy film on my skin.

I’ll either spontaneously heal, or suffer through the next 21 days until my dermatology follow up. There are not words to describe how tired I am of doctors, medications, and constant, unrelenting itching.

At least I’m not having much pain to speak of. That’s one good thing. I’m not sure I’d trade the constant itching for the pain, though. Both are equally frustrating in different ways. Although, I suppose pain is more mentally exhausting than itching.


 

It’s like a sunburn with blistered covered in poison ivy…

It’s been a few days since starting the steroid ointment and I wish I could report a vast and tremendous improvement, but no dice. My skin is in the same shape it was in a few days ago. It feels a bit like having a sunburn that blisters covered in poison ivy – a maddening level of pain, itching, and general misery.

The dermatologist advised me not to use a wash cloth in the shower so the lotions, creams, balms, and ointments are forming a thick sticky film on my skin. Since I’m taking cold showers, the film doesn’t wash off. Perhaps being covered in ilk would be worth while if it lessened the severe unending itching or burning, but it seems to make no difference. I itch and burn just the same.

Since I had the day off today, I washed all the bedding and vacuumed the house just in case one of the pets had fleas. Last night I medicated all of the pets with Advantage II. Even if the pets don’t have fleas, cleaning the house from top to bottom took my mind of the intensity of the itchiness for a while.

Sadly Halloween was dampened by my skin problems. I was too itchy and rashy to wear the costume I planned so I ended up wearing a skeleton shirt.  We drove to the city to visit a friend. The night turned out to be cold and rainy. The kids didn’t want to walk around the neighborhood trick or treating. I was supposed to drop photos off at a clients house but completely forgot. We ended up coming home early and I’m feeling a bit bummed that my favorite holiday was so uneventful.