Tuesday, October 9, 2012

Imagine: Stand In My Shoes

I invite you, the reader, to take a moment to imagine the following scenario.

First, imagine that you are a thirty-year-old woman. This is the prime of your life. You are still young with dreams of starting a family.

Imagine you've been diagnosed with infectious and autoimmune diseases for which you've been in treatment for nearly two years — only to be sicker than ever.

When you began treatment, you were able to eat virtually anything you wanted without repercussions, but you no longer tolerate most foods. You cannot use most cosmetics. You cannot be around people wearing fragrance, or exposed to sunlight or fluorescent lights. Any such exposure sets off a range of symptoms from sudden nausea to migraines to extreme fatigue.

You even avoid cooking because your gas stove and oven produce a gas that makes you incredibly sick. You've been told you have something called "Multiple Chemical Sensitivities" which has no cure.

Imagine that several supplements which, up until recently, provided some relief, are suddenly having an opposite effect.

One such pill, Cymbalta, has now created a catch-22 situation whereby you have not only started having bad reactions to it but you also cannot quit taking it without suffering even greater reactions (due to withdrawal effects). Imagine that discussing this with your psychiatrist or other physicians only produces raised eyebrows and more questions.

Many other things including the blood thinner you are supposed to take — without which you face a risk of blood clots and strokes — are giving you allergic reactions.

Imagine you're no longer able to hold your bladder, and in spite of pricey tests and procedures — including having your narrow urethra dilated — there is nothing that can be done except to pee in your pants several times a day.

Now imagine trying to go to the store or visit a friend when you could spontaneously and uncontrollably urinate on yourself at any moment.

You cannot stand on your own two feet anymore because it triggers your postural ortho-tachycardia syndrome, making it necessary to be sitting or leaning against something at all times.

You can no longer use a cell phone because it causes migraines and electrostatic popping feelings in your brain within moments of its usage.

You've seen a number of the "best" doctors in the Bay Area who have done some excellent things for you — they've managed to successfully get rid of your parasites; they've also corrected your Hashimoto's thyroid disease with the use of thyroid supplementation.

But they've also used you as a guinea pig for many treatments without backed research. Supplements that are supposed to balance your gut, detoxify mold and staph overgrowth in your body, improve mood and energy, and modulate your immune system have all further damaged your health.

And insurance doesn't cover any of these doctors or medications, so you've spent tens of thousands of dollars out of your pocket.

Imagine that you've reduced your dosages of supplements to one-tenth of the normal dose after experiencing negative reactions, only to hear that you "must" take the full dose or else you won't recover.

Imagine your doctors, naturopaths, other practitioners and members of the Lyme community urging you to continue to take the things that are making you so sick, because "you have to get sicker before you get better."

You've even altered your lifestyle and your diet by eliminating all alcohol, gluten and dairy products but have experienced no relief. You've had chiropractic adjustments and energy healing which has produced excellent, transformative results which, sadly, only lasted a day — and then you returned to homeostasis.

You've stopped drinking tap water, stopped using non-stick pans, paid the Smart Meter removal fee, use earthing devices, and a lot more.

Your quality of sleep is poor, marred by vivid nightmares every night, and teeth grinding so severe that your dentist made you the strongest, most heavy-duty mouthguard available on the market. Your teeth grinding, completely out of your control, was so bad it caused damage to your jaw.

Imagine your nose runs every minute that you're awake. One day, when you were about twelve years old, you caught a cold — and it hasn't gone away. You've taken allergy pills, gotten allergy shots, had surgery to repair your sinuses, and still your nose drips like a faucet every day, no matter where you are or what you eat. You've been carrying tissues with you for eighteen years.

But the physical symptoms have nothing on the emotional ones. You're facing the worst depression and anxiety of your life — anxiety so gripping, so monstrous that it feels like you've been poisoned with stimulants, a sensation a hundred times worse than when you drink too much coffee.

You've chewed off your lips and the inside of your mouth. You've picked at your skin until it's covered with scabs. You can't sit still; your legs and toes must be in constant motion. You can be exhausted but it still takes two hours to fall asleep. Your thoughts race. You're impatient and constantly rushed. You feel bouts of rage and extreme anger. You feel like a monster has taken over your brain and only an exorcism can save you.

People say, "Just relax" as though you hadn't entertained that thought before. As though this is somehow within your control. As though meditation and visualization can get rid of this horrendous anxiety which you are convinced is biochemical and not psychological.

(Update 10/11: As per the anxiety, it turns out I had become extremely hyperthyroid. Hyper, not hypo. With Hashimoto's disease, the thyroid swings from hypo to hyper and requires constant monitoring. Focusing on the infectious side of my health meant that I had neglected to monitor my thyroid and grew too comfortable with (and trusting of) my daily thyroid supplement — a medication meant for hypothyroidism which essentially has been overdosing me for months, thereby making my thyroid hyper. Huge mistake. And it accounts for my feeling of manic, gut-wrenching anxiety, which — I knew — was not psychological but rather, purely biochemical. It's a horrific feeling. Thyroid should never be overlooked. Never. I blame myself for delaying appointments with my endocrinologist and taking my thyroid for granted. I have thyroid disease which can have a huge impact on my well-being. Huge. Anyway, it's good to solve at least a small piece of the puzzle — hopefully the worst part, but at least one part. Back to my hypothetical now.)

Imagine you are college-educated, with degrees in both journalism and graphic design, but that you can no longer work in your field because you cannot sit in a chair, stare at a monitor, or use a mouse for more than five minutes at a time without developing neck pain, eye pain and neuropathic pain in your hand — not to mention the extreme fatigue that makes an eight-hour work day impossible.

Imagine your favorite hobby to be songwriting, but that you just had to quit your band of seven years with two EPs under your belt because you can no longer perform.

Imagine your friends have stopped checking on you. While they used to send sweet one-line text messages to show they care, they don't do that anymore. They post photos on Facebook showing themselves having fun at parties that you used to be invited to. When you reach out to them, they suddenly act like your best friend. They use ungenuine, over-the-top endearment and offerings of help with groceries or transportation, but when you text them in moments of need, they're always busy. I have a word for people who are all talk and no action — fake friends.

So, okay. You can't work, you can't participate in your band anymore, and your friends are busy living their normal lives. You have zero communication with your mother or one of your siblings, and no family lives anywhere near you. You haven't had a boyfriend in three years. You are completely alone.

And it's your birthday in just a few days. But you have no plans because you know you won't feel up for doing anything, nor is it likely anyone will do anything surprising or fun for you.

But, imagine that in spite of all of this, you put on a brave face to the world — smiling wherever you go, photographing yourself at the beach or playing with your kitties — and you're doing such a good job of masking the pain that people are saying they are actually surprised to hear that you are not well.

For years you've resisted posting whiny Facebook statuses documenting your health. Day after day, when you pee in your pants, or have an hours-long episode of dry heaving, or have sharp pain in your spleen, you instead update your Facebook status with a funny anecdote about your cat — or art, or political humor or whatever might give off the impression that you are okay — because, God forbid you start to come across as a perpetual whiner.

Sometimes you turn your pain into humor, adding "LOL" to the rare symptomatic-themed status. Your freakish symptoms can be cause for amusement. But mostly you resist talking about them at all.

And now you're considering taking a different approach by no longer trying to cover it up. You're not going to put on the makeup, style your hair, smile for photos, or try to be funny or cute on Facebook. You're not going to say "I'm okay" when people ask how you are feeling. You're going to be honest.

What will result from this shift? Surely people will become annoyed. People will worry about your "depression". You won't be as likeable. Oh no! Less likeable? A life-long fear.

Honestly... what would you do if you were in this situation? What would you do if all of the above applied to you? 

If you talk about it, you're deemed a complainer. People think you dwell on being unwell. You're told to get out more, do more stuff, but how do you do that if you can't stand upright or be around scents or hold your bladder?

(Switching to first person now). I do not write all of this to complain or to get pity. Nor am I looking for attention. I am writing all of this to let you know where things currently stand and what I am enduring. This is reality. This is my tortured daily reality. Okay, I don't mind a little bit of sympathy. Not the ungenuine, over-the-top kind, but a sympathetic gesture from time to time is nice — just being honest here — even though that's not why I blog.

I also want everyone to know that I have completely ceased all my treatments for the time being. Completely. No more tiny doses of anything. I am done. I refuse to continue to live in this condition.

I believe that my supplements have blocked my methylation pathways so severely that my body's immune system response has become so hyperactive, so maxed out, so overworked, that I am having an immune response to everything. Taking an indefinite break may allow my immune response to normalize. I'll keep you posted.

The one thing that's been helping in extreme moments of despair (which have become daily episodes) is Benadryl. What's interesting about this is that Benadryl — while hard on the liver — is an anti-histamine, an anti-inflammatory, and an immune suppressant, further supporting my theories about what's going on inside of me. By virtue of its composition, it's helping me with allergic reactions, inflammation in my brain and organs, and temporarily calms my overactive immune system. It also relieves anxiety and helps me sleep. It's the wonder drug for now. But it's not a solution.


  1. Leila... That blows goats. Sweetie, I'm so sorry. Chronic illness that's as debilitating as yours is difficult enough, but adding the lack of medical research and the glut of medical and popular skepticism... It's awful. I've watched my mom struggle with severe, atypical Ehlers-Danlos Syndrome for about fifteen years now, so I know that this sort of complicated and hard-to-root-out chronic pain and malady can be utterly crazy-making. I hate that you're going through this.
    One thought... Is there a generic 'rare disease' or chronic pain support group in the Bay Area that you might be able to join? I know it's nearly impossible to get there right now, but it might be something to investigate in the near future when you've crawled out of this Pit of Bad...

    More later. Much love.

  2. leila-- i am so sorry for all that you are going through-- it sounds horrific to me. i also have an auto-immune disease, rheumatoid arthritis-- at one point in my life it completely debilitated me -- then i started researching this disease and found out that my anti-depressant, and other medications were actually making it worse. i quit taking all medication and started ingesting and smoking THC-- i can not tell you what a difference it has made in my life. i know not all people are open to this, but man oh man it has changed my life and my RA doctor approves and is amazed at how my disease has stopped progressing (: the are other ways of obtaining THC besides smoking -- they make it in oils to ingest-- please check out the web site "phoenix tears" and see how many people these oils have helped. it seems to me that you have suffered long enough and tried traditional and non-traditional treatments... maybe THC oil would work for you-- anyhow, just my thoughts. i am thinking of you and hoping that you find some relief soon.


    1. Thanks Angela. Unfortunately I am allergic to THC. At first I thought it was something in the smoke but then I tried a couple drops of straight THC oil and had a horrible allergic reaction to it :(

  3. I havent heard of anyone that does well stopping Cymbalta suddenly, please taper slowly if you are not doing this already.

    You can write!


  4. Leila,

    I am sorry for all your struggles. I can relate, yet not totally. I too, have Chronic illnesses but I don't have quite the sensitivity as you do, thankfully. I wish there was some miracle cure for you, for all of us. I will keep you in my prayers. One time I was feeling completely alone and my friend, Michelle over at My Lyme Symphony wrote a letter to her chronically ill friends. It's here: http://www.mylymesymphony.com/2012/08/i-know-you.html Surprsingly, it not only brought tears to my eyes but was extremely comforting. If you are interested, Leila -I know we are sort of far away-we could chat by phone and maybe occasionally get together for a visit? I am in Sacramento. (If you are interested, let me know and I'll send you my info.) If not, I understand. Just know you aren't alone. There are others out there like you, unfortunately.
    Thinking of you and praying for you also.

  5. dear leila
    i'm a silent reader of your blog.this entry was the one that made me cry.words can't say how sorry i am for you and all the things you have to deal with.i don't have a chronic illness but i'm suffering under depressions and anxiety for years which is terrible but when i think of you and all the pain you have to live with every single day for so long now,i don't know if i could survive this just one day.you're a survivor leila,you show this world every day what kind of fighter and life lover you are,i believe that not many people could do what you are doing every day and you still being so positive.you don't know me and i don't know you but i feel your pain so much in your words,it makes me so sad that life is doing this to you.
    i wish you all the best,please never give up,i wish you healing more than anything and way less pain,you deserve so much better and i'm hoping that one day this nightmare is over for you and your body is doing better.
    xoxo,sophie from austria

  6. For the years you have faced this illness, you have proven to be amazing & strong. Your friends who don't understand what you are going through will never understand. It is a pity that they are disconnected from you, as you need every ounce of emotional support during such an overwhelming sickness. I am sorry for everything that you are experiencing and I do hope that, in time, you are able to heal & find the happiness & health you so deserve. You are an eloquent, intelligent lady. And, you are loved... Even if you don't hear those words every day.

  7. Did all those things happen to you? Wow, I could hardly imagine myself having any of those. You obviously is a strong woman. Bad things happen to good people eh. Don't lose hope and keep praying.