December 9, 2013 by Elizabeth Milo

Reblogged from THE-LABYRINTH: Now, Imagine How This Feels…

Now, Imagine How This Feels…

3 DECEMBER, 2013 BY MICHELLINA VAN LODER 7 COMMENTS

Imagine that it’s Tuesday, the one day a week where I am lucky enough to attend an Advanced Nonfiction class at Victoria University (VU), and I’m psyched! I don’t have to worry about air-borne fragrances or solvent-based particles from spray deodorants or solvent-fragrance based hairsprays contaminating the classroom air. I don’t have to worry about having to leave the class due to symptoms bought on by breathing in fragrances that other students may have used. I don’t have to worry about the molecules of these toxins sticking to my hair and clothes, making me sicker later on. And I don’t have to worry about sitting in class while wearing my mask and not even knowing if there are solvent or fragrance chemicals emitting from other students into the air of the room (My sense of smell is virtually blindfolded by the 3M mask that I sometimes have to wear to protect my health… If it wasn’t impeding on the ability of my olfactory sense, then sure, I’d be able to breathe it in and smell it, thus warning myself, but not before getting chronically ill. Sometimes for days.).

*What a Fashion Accessory*

(Just so we are clear, you know it’s breathing in these chemicals that cause symptoms, not the actual ‘smell’, yes? Of course you do! Silly me for even asking that. Next time, I’ll ask it rhetorically.)

Imagine being chemically sensitive to solvents, fragrance chemicals and the petrochemicals used as ingredients during the manufacture of designer fragrances, the el-cheapo imitations, and in popular deodorants (like Lynx, and Mum), and getting to go into class each week, safe in the knowledge that (retrospectively) 94% of the time)) people will have made the effort to go free of these products? (Sure the air may smell of scents, due to shampoos, conditioners and roll-on deodorants; and it may even be floating with notes of patchouli and jasmine from products containing essential oils because in our requests to get people to go fragrance free it has been explicitly expressed that it’s preferable for them to use products that contain natural ingredients. I know this is not an ideal situation for some chemically sensitive people but for me, it totally was! An essential oil could never impact on my health in the same way as a spray on fragrance can.)

Fragrance: Designer or Fake; it’s still Toxic

Imagine that there is a notice in the Student Handbook explaining that some students are sensitive to chemicals and that there are some classes where people will be reminded to be ‘mindful’ of certain chemical-based products.

Imagine the teacher sending out an email the day before to remind the rest of the class to consider my need to breathe air unhindered? Sure, I could wear my mask for the whole class but as many chemically sensitive and immune compromised people know, there are a few problems with this: firstly, the lack of oxygen is not conducive to learning, thinking or contributing to discussion; secondly, there is the limited ability to show facial expressions, therefore, causing a hindrance in communication (not for everyone, a few people, mostly teachers, see past the mask and talk to me as if I am the same as everyone else); thirdly, and most importantly, it can be dangerous in that if there is a lot of fragrance in the room, it then gets on my hair, skin and clothes, and sometimes into the tear ducts of my eyes, but additional to that, if I sit in the room for the whole class, then leave and remove my mask, I become chronically ill due to solvents, petrochemicals and fragrance chemicals being all over me and in my airways. And lastly, what some of you may not know, and I’ve only just recently found this out from the Disability Discrimination Legal Service (DDLS) myself, is that wearing the mask is actually a forced impediment! I have a right to go to class and not wear a mask, just like everyone else. That’s on top of the law that states that it’s Indirect Discrimination to not be able to access the class (or any other area where people have equal access) due to air-borne fragrances.

Imagine the cleaning staff changing to using fragrance free products in the buildings that I use. (Perfume-free Library room and building 10.) And that they are doing this with the intention to change to using fragrance free products in the rest of the university when the other products run out. (Their theory behind this: the chance of fragrance free products impacting on other students health is almost none, the chance of fragrance chemicals impacting on more students health is higher.

Imagine they do the same with the hand soap in the toilets. (You see even if a student comes to school fragrance free, they won’t stay that way if they wash their hands in the bathroom unless the soap they use is fragrance free.)

(Note: Staff at VU have worked every corner of the boxing ring to accommodate and include me in the classes and lectures; and I’ve never had to use the ‘discrimination’ card to force them to fit me in. (I do know that they’ve injected the word ‘discrimination’ right into the main vein of bureaucracy via communications between various departments. All in the name of making shit happen! It’s like they know that I belong there. I really feel like that! Okay, there was this one teacher… but I’m not going to go there, today. This post is about being thankful!)

Imagine how I felt as I went to class, attending to my studies just like everyone else? At times I felt a tad guilty about the trouble people were going too. But do you know what I found? That speaking out about fragrance chemicals and their effects, gives others permission to do the same. No one wants to be a troublemaker. No one wants to complain—or seem to be complaining—about what products people use. No one wants to be seen to be different (for the wrong reasons).

Towards the middle of the last semester, a text went out asking people to be mindful about all staff and students who suffer health problems from these products. And it said that all classes are fragrance free!

I’ve already expressed how much I feel like I belong in this particular learning institution. So much, that I feel as if my experience and my illness have taught others; but more even more so, it’s taught me that that anxiety I feel in the pit of my stomach right before I speak up about the ‘fragrance issue’, that anxiety is a tool. A tool that I can tap into to help facilitate a positive outcome—for me, and/or for others. It could also be a tool that I use to run, hide, squirrel myself into isolation. But no, I use this ‘anxiety’ to spur me on…

Imagine going to class each week and finding that that anxiety has faded into the background. Sometimes mildly humming back there, ready to remind me to remind people of the boundaries. Imagine it just hangs out on the peripheral of my attention, letting me focus on my studies, 100 percent.

Imagine going to class each week and finding—knowing that there is an air-purifier in the room that a teacher or security staff member has kindly, turned on an hour previously. Imagine that Victoria University Disability Services (VUDS) decide to put the air-purifier onto a timer, just to make sure it goes on at the right time.

Blue Air Purifier Supplied by VUDS

Now, imagine they put a sign on the classroom door, reminding others that the room is fragrance free and that toxic chemicals contained in personal care products can and do cause and exacerbate symptoms in people who have asthma, chemical sensitivities and those who have immune disorders, and to please refrain from wearing them? Imagine they source that sign themselves, via the Allergy, Environmental Sensitivity and Support Research Association (AESSRA) website, printing and laminating it, placing it up around the building: in the main office and the two low-toxic classrooms.

The Classroom Door with Signs Attached

Imagine that the Professional Writing and Editing Coordinator, along with my help, drafts up a bullet point list of reasons why students could refrain from wearing certain products; what happens to me if I breathe them in (in the short term) and what happens to me if I breathe them in (over the long term); what they could use instead; and of what benefit it would be to them and others if they could do that.

Imagine how validating that would feel…

Imagine VUDs loans out an iPad to me so that I can minimise my exposure to breathing in petrochemicals from the inks in books and on pages. Imagine the possibilities for utilising this as a learning tool? I can take photos of the notes on the board. And I can use it to photograph documents like class room handouts. This way I don’t have to air them later; or curse when the wind blows them away or they get rained on while out airing. OMG, and the books! And the newspapers I can read on it!!!

Imagine one of my amazing teachers goes to the trouble of putting printed material behind plastic for me?

I know, it’s probably a dream, yes?

No, it’s reality.

(And can I just point out that lately my health has been impacted less by printed ink? It’s been a few months since I opened the mail, breathing in ink fumes that are so toxic to my system that just the exposure to the petrochemicals wipes me out for the rest of the day. I still air my mail. Still take precautions. But I’m not suffering such intense symptoms with printed material. (Glossy magazines. Not so lucky. Massive headaches. Small steps, small steps… I’ll get out of here!)

Now, imagine that it’s the end of the last Semester and that I’m two subjects away from owning my Diploma in Professional Writing and Editing. Owning. My. Diploma. Me? Imagine the buzz radiating within. How awesome would that be?

Now imagine that the weekly email that goes out to the students before classes no longer asks people to remember to accommodate me, Michellina van Loder. No, it asks that students to please refrain from wearing chemicals so VU can accommodate all the students who suffer with this problem…

Imagine that all the anxiety and fear that’s been eating away at me as I collaborate with people to get my needs met, imagine it’s all been worth it. Imagine that it gave others permission to speak up. Others who suffer asthma, headaches, allergies and many conditions that flare when the person is forced to breathe in fragrance chemicals for hours on end.

Imagine this, my reality…

You see for me, this is a really lucky thing, for I don’t have a great support network of friends and family who will go fragrance free for me. Some will go without it for a visit or two. But these people are never really fragrance free because using fragrance is a daily thing for them. It gets into every piece of clothing or furniture they own. It’s in their cars. It’s everywhere, so even when they try, it’s still a problem. (I’m grateful for the few who don’t wear it, won’t wear it.)

So this sense of belonging I feel when it comes to attending classes and being a part of VU, it’s an important and valid part of my identity: a student, a writer, a poet, a professional blogger. It’s all wrapped up, right there!

Fragrance is the opposite of a social lubricant; it’s an emollient that rusts away, seizing up all working parts until things are just fucked. And each time you have a discussion with someone who doesn’t want to go without wearing fragrance, the talking—however gentle the persuasion is—causes friction over time. And that there, the resistance, is the rusty beginning of a solid relationship turning into a wasteland of broken hearts and hurt feelings.

But it’s really great that I have this, and I’m so grateful to the staff and students at VU who are up to speed on this issue. Now, we just need the rest of the Australia to catch up!

November 24, 2013 by Elizabeth Milo

My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

Jobst Relief, Thigh CT, Small, Beige
Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

September 17, 2013 by Elizabeth Milo

30 Things About My Invisible Illness You May Not Know

Well, I’m a few days late (and more than a few dollars short). I’ve been working on this post for a week while not feeling well, but I’m determined to finish. Invisible Illness Awareness Week was last week and, in an effort to raise awareness, invisibleillnessweek.com has put together the “30 Things About My Illness” questionnaire below. The website offers support to patients and caregivers through articles, podcasts, illness lists and links to associations and resources. You should check it out!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

Myalgic Encephalomyelitis. I have other conditions, such as mast cell activation disorder, thyroid disease, dysautonomia, hypoglycemia, IBS, dysmenorrhea, and chronic intractable migraines but these are speed bumps in relation to the Mount Everest that is ME. Undoubtedly, all these problems are connected in some way.

2. I was diagnosed with it in the year:

I was diagnosed about one year ago.

3. But I had symptoms since:

ME hit me one night like a freight train around 11pm on Halloween night, 2011. One hour I was fine, the next hour I was in the grips of what I thought was a very bad virus. Chills and drenching sweats lasted all night and… the rest is history.

Years before that, I had dealt with thyroid goiters, anaphylaxis and vasovagal syncope, but they were just blips in my otherwise healthy, normal life. ME changed that.

4. The biggest adjustment I’ve had to make is:

I could say losing my career, my social life, traveling, my income, the future I envisioned… But, really, the hardest adjustment has been a life with minimal energy expenditure: the loss of walking, running, talking exuberantly, emoting, gesticulating… I hate this still life.

5. Most people assume:

Most people assume I’m being antisocial. Most people assume that I worked too much, hit a wall and walked away and am just uncommunicative. Only my family and closest few friends know the extent of what happened to me.

6. The hardest part about mornings are:

The distressing, sinking realisation that I’ve woken up too early (and won’t go back to sleep) and had a bad night. Feeling dizzy before I’ve even opened my eyes. Being greeted with a headache and neck pain before I’ve even sat up.

7. My favorite medical TV show is:

House!! And any real life medical show like Trauma: Life in the ER. I’ve loved that stuff my whole life. They used to show real operations, graphic and unedited, on some show in Ireland when I was young and I loved watching. I’m not squeamish; I always thought I’d be working in an ER.

8. A gadget I couldn’t live without is:

My smart phone. It’s my lightweight connection to the rest of the world: news, blogs, emails, texts, photos, videos and calls. Plus, it has all my meditation CDs on it.

9. The hardest part about nights are:

For the first year I was sick, nights were lonely, terrifying, desperate, viral horror shows. There are not adequate words to describe what my nights were like. Now, the hardest part is the fear that I will not sleep well and will wake the next morning feeling worse.

10. Each day I take __ pills & vitamins.

I usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement hiatus, so I am only taking probiotics, magnesium, melatonin, Zyrtec, nasal spray, topical antibiotic cream, and a few times a week, when I have a headache or can’t sleep, I take Tylenol, Unisom, and Tizanidine.

11. Regarding alternative treatments I:

I have tried most of it: acupuncture, massage, craniosacral therapy, reiki, energy healers, meditation, breathing exercises, diet, stretches, Chinese herbs, supplements blah blah blagh. I don’t know what constitutes “alternative”, but I would do anything to get better.

12. If I had to choose between an invisible illness or visible I would choose:

I have a half-written blog post called “Visible Illness” because I look sick ~ or, at least, I look different than I used to ~ and I have caught myself feeling jealous of the “healthy”-looking ME patients I have seen online. However, my illness is invisible in the sense that nobody can see just how bad it is by looking at me ~ especially during the first year, when I pushed through everything to go to work.

Which would I prefer? Neither. Illness is evil and, ultimately, nobody can ever comprehend a sick person’s suffering, regardless of how bad they look on the outside.

13. Regarding working and career:

I never stop dreaming about my next career. I have a different idea every day. I miss working, I miss having responsibility and helping people, I miss being good at something, I miss having the security of an income.

14. People would be surprised to know:

Those that haven’t seen me in a while would be surprised to see that I have gone from an energetic, talkative, happy, demonstrative, busy person to someone who moves very little and doesn’t leave the house. Those close to me might be surprised to know just how black my blackness was this past year and how often I thought about suicide (it took all my guts to write that word. It’s shameful and scary, but true).

15. The hardest thing to accept about my new reality has been:

That I can’t exert energy. That’s it. It rules all else. I can’t find a new job, I can’t make plans for a different life than the one I had imagined, I can’t socialise or cook food or deal with banks or disability or do anything to adapt and move on. I only feel ok if I am flat on my back, not moving. But I keep trying to make progress and those endeavors always cause me to be in pain. And I’m intolerant to painkillers. So it’s a continual try-to-gain-ground-get-knocked-down cycle.

16. Something I never thought I could do with my illness that I did was:

Admit it – admit I was a sick person. Also, there was a time when I wondered if I’d ever laugh again. When the headaches ease up, laughter returns. It’s glorious.

17. The commercials about my illness:

There are none, but there are commercials about fibromyalgia and, of course, they show women able to move freely if they take Lyrica. Imagine the only symptom being achiness! Imagine a pill taking care of it! Sign me up!

18. Something I really miss doing since I was diagnosed is:

See this post. Dancing with my dogs on the beach, eating whatever I want, staying up late, talking nonstop, getting excited, getting angry, having a career, dreaming up future plans, driving myself places, traveling, having financial security… See the recurring theme?

19. It was really hard to have to give up:

I want to say everything in #18, but I’ll change it up and say getting dressed and feeling pretty. I miss a great pair of jeans and make-me-feel-tall boots and thinking my eyes look bright and generally feeling attractive.

20. A new hobby I have taken up since my diagnosis is:

Meditation. I couldn’t live without it now.

21. If I could have one day of feeling normal again I would:

Only one day? So not enough time to go to Europe? Can I plan this day in advance and get my loved ones to come to me? Ok, I’ll assume that’s a yes. Then I would get everyone I love to Seattle in advance and on The Day we would hike, talk, laugh, play games, eat a lot, get rip-roaring drunk, never have to rest and then sleep soundly, deeply, peacefully ~ without a cpap and with my husband and dogs.

22. My illness has taught me:

How under-equipped society is to help the disabled, sick and elderly. It is astounding and harrowing to realise how difficult and time-consuming it is to drive, park, get to a doctor’s office, get home help, get financial help ~ everything! And, when you’re sick, everything costs more, so what happens when you can’t work? I worry about old age all the time.

23. One thing people say that gets under my skin is:

When people say nothing. When friends don’t want to “burden” me with their own problems or don’t contact me because they don’t want to “impose” or don’t text me because I haven’t responded in days/weeks and they think the ball’s in my court or that they don’t want to keep “bothering” me. It is incredibly comforting when someone asks questions about my illness or vents to me about their hardships or gossips about work or continues to let me know they are thinking about me. Once in a while, I would love my husband (and family) to take a break from being the strong caregiver and wallow in a bit of mutual mourning: “This is so fucking unfair! We had dreams and plans! We had only just stopped living paycheck to paycheck! You were so alive and I am turned inside out to see your life force disappearing…” Maybe it’s selfish, but, someone else screaming at the sky would make me feel a little less alone.

24. But I love it when people:

Remind me that, even in this diminished capacity, I am still vital and worthy of being a friend.

25. My favorite motto, scripture, quote that gets me through tough times is:

“As long as you are breathing, there is more right with you than wrong with you.” ~ Jon Kabat-Zinn

Also, my mother once told me she had read that if you have one pain-free day, there is the possibility of being permanently pain-free. I think about this all the time on days like today: Just because I’m having a bad day today, it doesn’t mean I will always have bad days. There will be days again without headaches. There will be days when I can move more freely.

26. When someone is diagnosed I’d like to tell them:

You will improve. That was the first line of an email someone wrote to me and I didn’t read any further, I just closed the computer and wept. I needed to know that life could and would be bearable one day.

Also, I caution anyone recently diagnosed to not read all the horror stories about ME. It is good to raise awareness about the severity of this disease, but, after doing tireless research for months, my fear drowned out what my body was whispering. Stop pushing yourself, rest, listen to your body and believe you will improve.

27. Something that has surprised me about living with an illness is:

How many of us there are ~ in every country, of every age, ethnicity and socioeconomic standing. I am amazed and grateful for how many of us are online, sharing advice and giving support to each other. Sometimes, you lot are all that gets me through.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Not leave me. My husband, family and a few friends have wrapped themselves around me ~ physically and virtually ~ and given me the security that I have SWAT team back-up in this war.

29. I’m involved with Invisible Illness Week because:

I’m quoting Linds: “I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.”

30. The fact that you read this list makes me feel:

Honoured. Or honored, depending on where you learned to spell. 🙂

Also check out my other blamily members’ answers to this questionnaire: Jess, Marie, Christine, Luminescence, Trisha… Who have I missed? Let me know if you posted this questionnaire to your blog and I will link it here.

September 5, 2013 by Elizabeth Milo

Surgery and ME/CFS

After two weeks of wonderful, solid sleep with few awakenings, I was beginning to see the light. Over the long weekend I started to feel more normal than I have felt in months ~ maybe a year. I could do so much more during the day and I was still feeling alright before bed. I didn’t have any periods of utter exhaustion or flu-type feelings and my brain was firing on more than one cylinder (not all cylinders, but obviously more than usual). My physical therapist and I always talk about movies, tv shows, music and books and I can never come up with names or titles: “Oh, you should read… I can’t think of the name… it’s written by what’shisname… you know, the American guy that was living in England…” I get so frustrated. There have been many times I wish I could text him after I get home and can look up the ten things I was reaching for. Yesterday, my brain was a smooth operation. It truly felt like somebody had lubricated the synapses. There was a sense of physical spaciousness. It was a well-oiled, humming machine, almost like my healthy days. “Edward Norton was great in Primal Fear. I loved him in American History X… Yes, I adore Kevin Spacey. He was so good in American Beauty. And Seven! Oh, and the David Mamet play… Glengarry Glen Ross ~ so good! And Swimming with Sharks. I’d love to be able to see him in Iceman Cometh on stage…” All those names! They just came to me! No searching, no hard grinding mental gears, no giving up in frustration. It just illustrated the limits with which I’ve been living.

Anyway, last night I didn’t sleep and I feel dreadful today and my head hurts and my brain hurts and I fear the worst for a downhill turn. I got 4 very broken, very uncomfortable hours of sleep because, in the middle of the night, I woke up with a terrible pain in my abdomen. It is a recurrent sharp stabbing in the upper right quadrant, which has me grimacing and sucking in air every few minutes, trying not to gasp or moan so my dog doesn’t panic (which he does when I’m in pain). Throughout the night, I did everything I could think of: walked, sat, breathing exercises, massaged, drank water… Nothing helped and it is still with me now, nine hours later and definitely has me worried. I assumed it is a issue in my bowel because that is where all my problems lie, but I spent the night lying in the dark quiet, worrying that is my appendix (also, I had a bowel movement and nothing changed). I’m not vomiting and I don’t think I have a fever, so I’m not jumping to see a doctor. But the pain hasn’t dulled at all and I am so, so tired. If it continues into tonight, I won’t get any sleep again.

As I lay there last night, I was tormented by the thought that it would suddenly get more serious and I would need surgery for something. I thought about all the info that I would want doctors and anesthesiologists to know in an emergency situation and decided I had to get up and write a doc that my husband could produce if I were incapacitated. Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough) and it is incredible how closely I fit the ME/CFS mold. After two years it still amazes me when my health history PRE-ME fits all the symptoms and idiosyncrasies. For example, vasodilators are problematic to ME patients and I already knew this was a problem for me before becoming sick because of my history with idiopathic anaphylaxis and alcohol causing collapse. Also, the doctors mention sensitivity to epinephrine and I have always told my dentists not to use epinephrine in my shots ~ it has been a nusance for them because they have to give me injections over and over again as my body metabolizes the anesthesia so quickly without the epi. And I had low blood pressure and experienced vasovagal syncope decades before I came down with ME, so reading that Dr. Lapp says “Up to 97% of persons with CFS demonstrate vasovagal syncope” amazes me … still.

I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes.

Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”

The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

Vasodilators, such as nitrous oxide, should not be used because of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

I have a cervical spine injury. Please be careful and gentle when intubating!

It would be wise to keep me on oxygen the entire time I am in the hospital.

Prescription and over the counter medicines and supplements: Please see attached list.

August 31, 2013 by Elizabeth Milo

Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.

My beautiful niece sent me this card. 🙂

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

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