Bonfire of the Vanities

I haven’t had the balls to write too much about this because it is all tied up in feelings of self-worth, obsessive perfectionism and long-dormant insecurities. This illness has taken a ruthless toll on my body and the changes on the outside have, surprisingly, been some of the hardest to accept. I say surprisingly because, if you are housebound and never see anybody, who cares what you look like? But the visible manifestations of youthful vitality disappearing have really saddened me and hit it home that I’m a different person now- in every respect. Even if I came out of this tomorrow, I am changed physically as well as spiritually.

I always looked, felt and, undoubtedly, acted younger than my age. About a year after becoming sick, that abruptly changed. Obviously, I don’t have a spring in my step anymore and I’m not as chirpy, lighthearted and energetic as I was, but my looks have also changed and it was a blow to my ego. I stopped cutting and dyeing my hair and its texture changed — it is dry and fluffy, rather than smooth and shiny. It becomes greasy very quickly. The hair loss on the top and sides of my head makes me feel old and sickly. My eyes are no longer bright; the whites are a dull grey and I’ve lost eyebrows and eyelashes that were already sparse. Last year, I saw an ophthalmologist for the first time with a list of grievances: gritty eyes, dry eyes, vibrating eyes, styes, blurry vision, floaters, difficulty focusing, difficulty reading… It was a long appointment and he did a battery of tests. My vision, remarkably, is still 20/20. I thought, considering I rarely focus beyond my four walls, that it would have deteriorated. But, the health of my eyes was a different story. He told me to hold a warm cloth over my lids for a few minutes every day to open the pores and treat blepharitis and, also, to use preservative-free dry eye drops four times a day (I was very impressed with his “preservative-free” recommendation based on my reactions to drugs. I’m happy to know they exist since I was using Bausch & Lomb eye wash and it would leave red track marks down my cheeks). He also found that my eyes had two different pressures, which he said was not normal and made me a glaucoma suspect. I return next month to have a check-up.

Dilated pupils to see the optic nerve.

Dilated pupils to see the optic nerve.

I went off the birth control pill 16 months ago and, immediately afterwards, my skin began to break out. But this was no normal acne. I’ve dealt with skin issues my whole life, but I was familiar with them and I knew where spots would pop up (chin, nose), why they were there (hormones, smoking, picking), and how long they would last. For the past year, I’ve had acne along my hairline and jawline. My forehead, which was always pristine, became rough and braille-like. This really took a toll on my self-esteem. Even if I could have visitors, I didn’t want anyone to see me. I went from feeling not pretty to feeling downright ugly.

My visit to the dermatologist has given me renewed hope and a plan of attack. She wanted me to take antibiotics, but I refused based on my gut dysbiosis. She wanted to try a drug that is used to lower blood pressure, but also has the side effect of clearing skin, but I can’t because my low BP is a constant challenge. She wanted to use some sulfa Rx, but I’m possibly allergic. So, I have a glycolic acid face wash, a new moisturizer, Finacea in the morning and clindamycin in the evening. It is already making a difference. The braille turned out to be eczema, which I’ve never had in my life, but Desonide cream cleared it up in 4 days. I can’t tell you how nice it is to have my smooth forehead back. I keep petting it (which will probably cause more spots).

New this year is weight loss. I spent my teen years wanting to be tall and thin, worrying about my body, and now I weigh less than I did when I was 15. It’s partly to do with my elimination diet – nuts and oats might have been the bulk of my calories – but I am eating as much as I can every day. I lather on the butter and rely too much on Terra chips for added calories.

I started experiencing what I now know is called gastroparesis. My food sits high in my stomach and doesn’t digest. I want to eat more, but physically can’t. The food I do eat, I don’t think is being absorbed properly because I’m eating more than enough for a 5 foot-nothing, mostly-bedbound lady. Muscle wasting is now more evident. I have chicken legs. One of my greatest wishes would be to bulk up my legs. I never thought I’d say that. I want muscular thighs. I want my calves back. I want to have faith in my strength like I did my whole life. My height never made me feel like I was weaker than anyone else. I tried bench-pressing with my brothers, I was good at arm wrestling, I hoisted kegs of beer around at work and ran up and down stairs with heavy plates and large trays of food and cocktails, held over my head. I was proud of my strength and now feel like every movement might injure me. My chicken legs won’t reliably carry me and my muscles feel taut and brittle.

The good news is digestive enzymes and HCl are helping me to move food on down so I can eat more. I don’t necessarily want to add fat on top of bone, so my goal is to continue to absorb nutrients and increase activity.

Vanity always seems worthless and trivial, but, in the face of chronic illness, it seems almost sinful. Tall? Thin? Nice clothes? Pretty hair? Perfect skin? All I want is strong bones, muscles and cellular energy. Who cares about the rest? Well, I still do, but it’s a work in progress. M.E. holds a mirror up and exposes your bare bones… burns away the affectation and demands you be okay with the foundation and framework, without the superficies and facade. Be okay with the soul, alone. There is a bigger lesson here for me to learn.


And Now For Something Completely Different…

My whole life my eyelashes have driven me nuts. They’re not inflamed or tingly, they don’t exactly itch… I used to say (this is gross) I could feel the bugs in the follicles moving around. My first memory of tugging at my lashes was in school when I was 10 years old. I remember where I was sitting and on which “fancy paper” I was writing ~ it had a horse design and I was using an eraser (which I then called a rubber) shaped like a watermelon slice. I had pulled out an eyelash and was inspecting it when I saw a classmate watching me and got embarrassed. Those of you that know me, will know the annoying eyelash syndrome of which I speak; I won’t go into more detail except to say that my eyes, lids and lashes were never dry, red, crusty, swollen or inflamed, so I never really thought about it much.

horse fancy papereraser






When I first had vision insurance in 2011, I got my eyes checked. My vision was still 20/20 and when I mentioned that my eyelashes bugged me a lot, the optometrist said I had dry eye and told me to get Systane dry eye drops. Last year, I had them checked again. It was during one of the Worst Headaches of My Life episodes, which was centered all behind one eye and I thought maybe the optometrist would see something. He didn’t. And my vision was still 20/20. But, he said, You have allergies that I can see in your eye and these dark circles are called “allergic shiners”. I got excited. Why had I never known this? (Although, my sister has the same dark circles and no allergies, so I was slightly skeptical.) He prescribed antihistamine eye drops which I swear made the annoyance worse. The little root mites were more irritated than ever.

Then one day I decided to research it because that has become my new profession: unpaid internet researcher of crazy physical conditions. By the way, did you read that NY Times article about the boy with arthritis? It’s long, but I highly recommend the read ~ especially for those of us trying to conquer diseases with diet and not drugs (plus, he drinks tart cherry juice like I do!). But I digress. I did some reading on eye maladies and my mild affliction didn’t seem to fit any of the descriptions (or look like any of the ABSOLUTELY DISGUSTING google images of eye problems. Ew, internet, I need to steel myself before looking at those sorts of pictures), but the remedy for blepharitis is to wash the eyelid with baby shampoo each day where the eyelashes meet the lid. I’ve been doing it and I think there is a difference. It’s too soon to tell, but I’m excited. I’m too sick to leave the house, but, by god, I won’t be tugging at my eyelashes! Unfortunately, my eyeBALLS have taken on a different life since I’ve been sick. They are not white anymore and they look like I’m a sick person, but this is new in the last year, so I’m not worrying about it. I’m just looking forward to one day wearing mascara again on lovely, full, long, itchless lashes.