November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

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I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

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I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.
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I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

dublin heart

Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X

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May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

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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.

My Funny Valentine

As a Valentine’s Day present to my husband, I decided to get marginally dressed again. I put on a bra and a red dress. Unfortunately, the dress, although clean, hadn’t been worn in a while and it smelled musty, so I switched to a pink sweater (pink and red are really living on the cutting edge of colour for me; they scream: I’m dressed up! I’m making an effort! ~ 90% of my wardrobe is black and grey) and leggings that have pockets and corduroy-type ribbing, so they give the impression that they are more civilised than mere cotton leggings. And I put on my new boots. I won’t take a picture every time I put boots on, I swear, but I never thought there would be a pair of flat boots that I liked and, more importantly, were proportional to my munchkin frame.

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Unfortunately, after two changes of clothes, my battery is almost dead and I’m dizzy and incredibly drained. I woke up feeling okay, excited that I wasn’t feeling evilly ill, but how dare I pull on leggings that take a bit more effort than PJs and bend down to put on boots rather than slip my feet into slippers? It was too much and it’s only 11am. I know I will be wiped out when my husband gets home.

The entire plan was: get dressed, brush hair and maybe put on make-up. Although, all my make-up is 2+ years old and putting it on means holding my arms up in front of my face, which is a lot of energy, and it also means having to take it off. Exhausting. I wracked my brain to think if there was something I could do to surprise him. Cook dinner? No way. Clean the house ~ or even just the sitting room? Nope. Buy a present? Too late to do it online and I wouldn’t know what to get, anyway. And we’re trying to conserve our savings. So, I think my present is going to be yet another card thanking him for saving my life every day (because, make no mistake, I would be in a very different predicament without him) and wearing clothes that kind of fit me.

The funny thing about my husband is, he would never notice what I’m wearing. I could be sitting on the couch in a ball gown and he wouldn’t bat an eye. I kind of love that about him. I certainly never have to feel self-conscious about looking slovenly. He tells me I’m beautiful even on my sickest days. Love is blind.

One of the most distressing symptoms over the last year is hair loss. Never could I have predicted that I would be upset about my hair. I don’t really like hair. I’ve always preferred men with shaved heads and, half the time when I’m talking to people, I’m thinking about how much I want to tuck their hair behind their ears or put their hair in a ponytail. I find it distracting (and kind of gross) that every woman on tv has what I call “hair curtains”. Long waves down the sides of their face that are pulled forward so they have this weird part in the back of their head and no hair down their back.

Hair curtains.

Hair curtains.

Weird back of head.

Weird back of head.

So, what do I care if I have less hair? Well, my hair loss makes me look even more sickly because it is concentrated in the front and on top. You can see my scalp too much and there are clumps of short hairs that are either breaking off or just won’t grow any longer. I was on a Facebook group and someone mentioned that, because she was in the military and constantly wore her hair in a bun, she was going bald on the top of her head, so she cut her hair short. Light bulb! I’ve worn my hair up every day for the last 17 months that I’ve been housebound. So, I’m cutting it short. I’ve had my hair very short before, so it’s not a big deal, but I do have a few concerns: 1) I can’t dye my hair now, so there is a lot of grey. I’m not sure how I’ll like short greying hair. 2) I can’t wash my hair very often and, when it’s dirty, it’s nice to be able to put on a hat and still have the illusion of clean from the long hair coming out below the hat. 3) You can put long hair up in such a way that it gives the illusion of being more “dressed up”. But none of these things will sway me because I have to wear a CPAP! The headgear on a CPAP mask is hell with long hair and is undoubtedly contributing to the hair loss.

My sister’s hair stylist is going to make a house call, bless her heart. I wish I had longer, lovelier hair and I could donate it like Marie did, but I just don’t have the patience to grow it. The point of all this is to say that I guarantee my husband doesn’t even notice when I cut my hair. I have left the house with long blond hair and come back with a dark brown bob and, even when prompted, he couldn’t figure out what was different. When he met me, my hair was very short and fiery red. He’s pretty much seen it all. Luckily, days before I met him he had shaved off his long hippy hair. I sometimes wonder if I would have fallen for him if he had a ponytail. Probably. Love is blind.

Happy Valentine’s Day.

1998

1998

Title Credit

Hope for a great sea-change

One of the things I never realized about chronic illness is that it is easier to drive than it is to take a shower. If you see someone driving their car to an appointment, you might think they’re doing okay, but that person may have needed help to wash their hair that morning. And, by “morning”, I mean afternoon because it probably took a number of hours to get from waking to bathing.

I can drive myself to nearby appointments and I can talk for the whole time I’m there – half an hour sitting up with a doctor, an hour lying down with the physical therapist – but, if someone witnessed this, would they understand that I couldn’t write a blog post that day, I had to put on clothes in increments over the course of an hour, I had to rest in a dark, silent room immediately before and after the appointment, and, if I had slept poorly, I would have canceled?

My husband has been washing my hair lately. I sit on my seat and he leans awkwardly into the shower while I rest my forearms on my knees and hang my head. He also helps me dry my hair. I sit on the toilet in much the same position as I did in the shower and he stands above me with the hair dryer.

My sister comes over to help me with laundry. It’s been a long time since I’ve expended the energy needed to fold or hang clothes, so there are wrinkled piles of clean, dirty and not-clean-but-not-dirty-enough-to-be-washed items in various rooms. I never thought my husband would be scrubbing my scalp while I sit naked and motionless or my sister would be sorting my underwear while I am supine, watching.

It seems like a new low, especially in light of the fact that I’ve been housebound for a year, I’m walking under 1000 steps a day and it takes about 15 minutes of activity to wear me out. But I don’t think it is a low. I feel hopeful; overall I may feel healthier than a year ago. I’m more debilitated now, but less ILL. More chronic, less flailing, flaring, uncontrollable. A year ago, I was freezing all the time during the day and drenched in night sweats whenever I slept. I was in constant pain and felt fluish every day. I was still going to the dog park and grocery shopping, but I was scared and overwhelmed. Maybe most of the improvements have been mental– now, when the viral symptoms descend, I don’t panic. I understand that this could be lifelong and any progress will always be at a snail’s pace. I understand there may not be progress at all, it may only get worse. I know now there will be spans of no pain and I just need to take one day at a time. In fact, every single night when I go to bed, I am excited at the prospect of another chance in the morning– at the knowledge that a new day may bring a better day.

My husband says, it was a long road down, so it’ll probably be at least as long back up. I try to relax into the ride, do all I can to unburden my organs and facilitate healing. When my inner workaholic and constant student starts to writhe inside this straight jacket, I soothe her: You are working. You are writing, reading, learning about yourself and opening your eyes to suffering. I remind myself that I don’t have to talk to people that annoy me, drive during rush hour, meet deadlines or bow to bosses. When my night owl howls, I tell it nothing fun happens between 9pm and 2am. You’re not missing anything, go to sleep. I try to believe it. I remind myself that I never have to hear an alarm clock. I ease into bed with a solid routine and, when I wake, I lounge for hours. This is healthy, don’t resent it. When cabin fever and loneliness threaten to make my mind come apart at the seams, I pretend I am monastic. I am on a retreat. I am cleansing, enjoying solace. This is a temporary stillness. It is needed. Revel in it. I get to enjoy the garden and the sun. I get to spend every day with my dogs, even if it is lying flat on my back. I promise myself: The world will be there when your body is able to meet it again.

Maybe this low is where the slide stops and it’s all uphill from here. Listen carefully: “Believe in miracle and cures and healing wells.”

So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.

Seamus Heaney,
The Cure at Troy
R.I.P.

Addendum to last post… Plus, missing my brothers.

Medical professional addendum:

5. I forgot to mention another doctor I saw- a great dermatologist (I’ve seen a few in my life and she is the best and hardest to get in to see with appointments more than three months out). I had a few questions:

What are these scaly circles on my fingers and palms that move around (please don’t say they’re warts please don’t say they’re ringworm please don’t say they’re contagious please don’t say they’re VIRAL!)? Answer: A type of eczema. No big deal. Keep your hands moisturized.

What is up with acne in bizarre places like hairline and under my jaw? It’s very typical “female adult-onset acne”. Those are exactly the places we see it show up. It’s hormonal and most definitely from coming off the birth control pill. Use 1% clindamycin lotion indefinitely (that was her second choice since the Good Doc won’t let me take oral antibiotics).

What is this Braille skin? It’s a precursor to acne. No! These harmless-looking bumps? Yes.

Why do I have brand new vertical ridges on my fingernails and is there anything I can do about my hair falling out? I have patients take biotin for both of those issues: 5,000mcg/day.

As I was leaving, ME/CFS came up while I was talking to the dermatologist’s assistant. She said, “Oh, my brother has that.” I had never known anyone with this disease, so my eyes widened (I actually teared up a little).
“I’m so sorry,” I said. “I wouldn’t wish this on anyone. It’s devastating.”
She said, “Yeah, he’s a dancer, so…”
“Oh no! So, he can’t dance. That’s horrible. Do you know how he’s handling it?”
She said, “I don’t really know. He’s pretty private.” And then, as if to explain her lack of knowledge, she added: “He’s my half-brother.”

I thought about what ME/CFS would be like if you were a career dancer. Just another level of horror. I don’t remember exactly what I said, but I think I said something like, “This disease is very isolating. I hope he has support.” I wanted to leave her thinking about it. I hoped that she would call him, move mountains to help him. From earlier in the appointment, I knew she’d just returned from Hawaii and I wondered if her brother knew she had been vacationing and I wondered if he let himself wallow in grief and jealousy as I sometimes do.

My brothers recently went on a fishing trip with my father and I love to think about the three of them together, but I ache to have been there, too. Just in the same room… My brother, the pilot, had a layover in Dublin last week and had dinner with my aunt and cousins and drinks with my best friend, E., and her boyfriend… It was exciting for me. Almost like I was in Dublin with E. Almost like I was in Dublin with my brother. I grinned from ear to ear looking at the photo they sent, while gritting my teeth against tears of desire. To be with E. and M., to be with my brother, to be able to fly, to be in Dublin, to be able to have a drink… Layers upon layers of loss. My brother also just had a brand new baby boy and I wonder how old my new nephew will be before I meet him. I wonder if my nieces and nephews will remember me or will I be “sick Aunt Elizabeth” that they just hear about for years. I always miss my brothers, but it has been overwhelming lately and is compounded by the knowledge that my sister is moving away from here soon. The atmosphere and camaraderie when we are all together is something special. I’m not going to get into it now because I’m premenstrual and risk a total meltdown.

Gratitude for siblings. xoxoxoxox