zeptember

I bicycled to work three times last week. I have not bicycled so far at all this week, and it’s not even due to PMS.

It started Friday, best as I can recall. I got a cankre sore on the inside of my mouth, under the lip, sorta in the chin area if that’s appropriate to say. I think the clinical term is ‘inferior lip’. Anyway, it went away by evening time. I had biked to work that day, saw my shrink after work, took an hour nap, went to a lengthy intimate dinner with my husband, then went to a new nightclub afterwards. I stayed up all night. By the time we got home in the wee hours of Saturday morning, I got to sleep for only about 2-3 hours before having to get up again.

On Saturday I had to wake at 6am. I was out the door by 7:10am and picked up my co-worker so we could go to class. This is the Practical Life college-level immersion class which was put upon us by the management, to sort of kick our asses into motion towards a full on teacher position. It’s good that our management sees this potential in us and is encouraging it!
I was a bad monkey for having stayed out all night - I was literally falling asleep in class. It was so sad. I wanted to cry, I was so tired, but I made it through. When I got home from school, I took a nap. I don’t think I was able to sleep an hour before my husband called, asking if I’d like to go to dinner with some friends.

Mad at myself for being so tired on a Saturday evening, I said I’d go. I know, I’m a glutton for punishment. We all went to a local taqueria for dinner, then went back to our friend’s house and watched TV for a couple of hours. We got home around 10pm if I recall correctly, and I went to bed.

I was able to get 10 or 11 hours of blissful sleep that night, but when I woke on Sunday morning, I felt like a mack truck ran over me. I had severe low back pain which made me want to cry, and pelvic pain.

But there’s no time to rest! That morning, we got all gussied up to meet another friend for a train ride for her birthday.

As I was getting dressed, my upper back/left shoulder went out. Seriously. It hurt to take even little breaths - it hurt deep under the back of my ribs. I had limited range of motion from my upper back to my left shoulder and up to my neck.

But we went on the train ride. The pain was so bad at times that I popped half Tylenol 3s throughout the day.

The pain was intermittent, too. That was the strangest thing. At one point, I was able to literally run and not be in pain. Later on, the train jerked while in motion, and I was in pain all over again. WTF.

Sunday night, the pain went away. Again, WTF.

On Monday, I decided not to bike to work for two reasons - one was that I was in pain again, and two, because it was supposed to be 90°F outside that day.
All day I had continued flank pain, and then a cankre sore popped out around 11:30am. I’d not had one all day Sunday if I recall. But now I have another one - what’s going on?

Then the news came down the wire that a child at the school I work at has Hand, Foot & Mouth disease. I freaked and called my doctor and got an appointment right after work.

The verdict? I do NOT have Hand, Foot & Mouth disease.

I DO have cankre sores, and I am NOT contagious, but I DO have swollen lymph nodes, so my body IS fighting something.

On Monday night, the low back pain returned, and I had to go to bed with a heating pad.

I woke this morning with low back pain and FUCKING SHIN SPLINTS! WTF!!!!

Over the course of the day, I developed a sore throat, sores forming under the back left side of my tongue, moderate fatigue, my left thumb breaking open again, and sore shoulders/neck. The thumb always breaks open due to food allergies and contact with tempera paint, the foam soap at school (I’ve been bringing my own soap), and other chemicals.

When I got home, I was so overtaken by fatigue that I took a nap on the couch. I got goosebumps, I was so cold, and the house was 73°F.

By 8pm, I developed a nagging headache. The headache is so bad now that it makes it difficult for me to keep my eyes open for much longer.

Something I thought about tonight is my ear piercing. Back on August 29th, I got a new body piercing in my left ear. It’s been slow to heal. I started to wonder if perhaps it’s set off a system-wide infection (sepsis).
I looked it up and I don’t really fit the symptoms for sepsis, septicemia or cellulitis. Headache isn’t even in the symptoms list for those.

So it is possible that I am simply getting sick from a child or children at work. Last week I was JUST thinking how grateful I am that I haven’t gotten sick every month from those little buggers.

I have yet to see where this all leads. But right now the headache is too much to bear. Gonna try to sleep.

Last week I talked about Triggers and Fundamentalism. I was set off because a fellow endometriosis blogger had found a site called Invisible Illness Week, which I was eager to join along with my fellow endo bloggers.

However, I found that the site is a Christian-run website. I drew a deep breath and registered to be one of the guest bloggers, anyway, because I really like the content on their website, it’s not pushing religion, and the more people voicing themselves about invisible illnesses, the better.

Then I waited, feeling in my gut that I’d be rejected. I felt this way because my website had said “contains explicit language”, and because my website currently has a black scratchy looking background, which is likely too dark and depressing for the average Christian, let alone the average anybody. I know that I exist within a subculture of people who enjoy outwardly expressing the more macabre side of life.

A day after posting my blog, I received an email from that website, commending me on my strength and resolve in battling an invisible illness. The email ended with “Best wishes!”

Immediately I knew I’d been rejected as one of their guest bloggers.

On top of what I listed above, my blog contains a section entitled Things I’ve Tried To Combat Endo, and within that section I detail how I USED to pray to God, but that “I left the fold in college”.

Being that the Invisible Illness Week website is Christian-run, it is no surprise that my blog would be rejected. I am not Christian. They rather covertly advertise their site as Christian - there is no ‘About Us’ or ‘Mission Statement’ that explains them as Christian, but there is a link in the upper right that says ‘Christian Resources’. If you look around on their busy homepage, you’ll also find an ad on the right side of the page for Rest Ministries. Clicking into that ad, you will see that there IS an ‘About’ page, and it reads, “Rest Ministries, Inc. began in 1996 and became a 501(c)[3] in ‘97. It was founded by Lisa Copen. Lisa was diagnosed a few years earlier with rheumatoid arthritis at the age of 24 and life had changed dramatically. She searched for some time, but was unable to locate the kind of Christian support that she desired to help her along this unexpected detour of chronic illness.”

I commend Lisa for being the one to take charge and put up a Christian-based support site for those who suffer with chronic illness and pain.

It still doesn’t stop the fact that I feel rejected by followers of God once again. It doesn’t stop the triggered memories of growing up fundamentalist Christian and being told from a young age that no matter what I did, I was always offending God somehow and would never be perfect in any sense of the word, but yet I had to always prove and prove and prove myself in the HOPES of one day being accepted and loved by God.

It’s not Lisa Copen’s fault. It’s not her website’s fault. It’s not the fault of the people who staff her site, who rejected my blog. I hold nothing against these people.

I’m still learning how to deal with my anger, my hurt feelings, my rejection complex, my bitterness after being raised in such a foul, miserable cult called Fundamentalism. I’m still learning how to forgive my ma for continuing to be a fundamentalist. It’s very hard work, emotionally. I am always trying to prove my worth to people because I could not prove my worth to God - religion according to my ma didn’t allow for it to happen. I am always feeling rejected by people to this day, because according to how I was raised, God had always rejected me, and yet I was always expected to keep trying to get into his club. These things are not easily unlearned and reprogrammed. It takes years, with therapy. There are moments where I feel I have transcended everything, but then something smacks me in the face again, and I find out I’ve not really come so far after all in emotional healing.

It’s a learning process. I am, as they say, a work in progress.

Today I went to a dermatologist for the first time. I’d made the appointment weeks ago but forgot to mention it here. There were two reasons I went:

1. I have a small red spot on my forehead, which showed up a couple years ago and never went away
2. I have dermatitis from food and chemical allergies

I got to my appointment, the doctor took a look at me after heard my concerns and family history (my dad, brother and first cousin all had skin cancer - all survived), and said outright that I do NOT have skin cancer. He asked me if my family had basal cell cancer - I told him I did not know but that I could ask. He replied curtly that it would have been helpful to know already. He then said I have an angioma, and told me that those are nothing to worry about, it’s just part of aging and happens to everyone and “is a sign that we are human”.

I asked him about some brown round spots near my ankles as well - he said those too are nothing to worry about. I’ve already forgotten what he called those - I’ll call back to get the name.

Regarding the dermatitis, he said it’s caused by exposure to detergents and solvents, and that some people are more sensitive than others. He said it’s not an allergy. I told him that when I eat anything in the bean family, or when I eat or touch gluten, my fingers split open. He told me flat out that he didn’t believe that to be possible, that he seriously doubted my claims.
I replied that whenever I even knead play-doh with children, my fingers break open and bleed within hours. He gave me a look that seriously said he thought I was retarded. I told him play-doh is made from wheat flour, which I am allergic to. This did not convince the man.

He asked what lotions and ointments I’ve tried. I ran down the list, and told him I’ve also been given a cortisone type ointment, but it made my fingers break out even worse. I told him that my mother once had a cortisone injection and had to be hospitalised from a reaction to it.

The doctor wrote me a prescription for Mometasone and sent me on my way.

I looked up the name of the prescription he wrote when I got home - it’s a corticosteroid just like the other stuff I’ve tried.

At that point I looked up the doctor on the Internet (cuz once again, I didn’t do that before the appointment - just found someone listed in the insurance book and got an appointment). He has two reviews but one is quite telling:

“don’t worry” turns malignant
by rcraig
March 23, 2006

The doctor saw my mother for a new mole that she was suspicious of. He told her “Don’t worry”. She trusted him and followed his instructions, and didn’t worry for months and months. I wish he had told her what to watch out for while she wasn’t worrying, as it turned out to be malignant melanoma.

* Cons: poor instructions, laisser-faire attitud

Can we say FIRED!?

Time to get a new doctor. I don’t play around anymore. I fire them left and right these days.

Dear Doctors,

Yours Truly,
zept

I always forget to journal about this so I’m making an effort to start, now.

After moving to California, my body started to detox. Within a year of moving to California, the state instituted a no smoking policy in public places. That’s when my body began to REALLY detox. And shortly after that is when a bunch of previously unknown allergies started creeping in - the first was chemical sensitivity. I started getting headaches and would literally gag when my nose smelled certain scents. I’d always been this way with cigarette smoke, but now it included all perfume and cologne, which I’d previously been able to wear and breathe when I lived in Michigan. The chemical sensitivity also included the scents of some oils and incenses, of which there were a lot in my house because I was a practicing Pagan. Later on, the sensitivity began to include hand lotions, shampoo, hair conditioner, soaps, and hair spray. Some brands are better than others.

But this weekend and especially today was a bad day for it. I wonder if the fact that it’s raining today had anything to do with it?

Yesterday I found some hand lotion I’d bought in the past year. I put some on my hands and within minutes was sneezing and got a headache.

Last night it was CVS Drugstore brand hair detangler and Rave hairspray as I prepared to go out for the night.

Today it was some dude smoking just outside the entrance to the grocery store. Then inside the grocery store it was the laundry aisle. When I got home and washed my hands, it was the Trader Joe’s lemon scented kitchen hand soap. Then when I went to look for a book on the bookshelf tonight, it was the cheap dollar store scented candle that gagged me.

As of today, every time some item sets off my nose and immune system, I am tossing it into a bag and offering to give it away.

I went into the computer room to tell my husband I was winding down for the night, and we heard the rain pick up outside. He turned off the light and we went to the window and just leaned there, watching and listening to the rain gently fall outside. I told my husband that I like California rain - it’s not like Michigan rain - it’s usually quiet and soft - soothing - gentle. And houses don’t usually have awnings for the rain to ping on.
Don’t get me wrong - I truly miss a good rainstorm in Michigan, complete with the ping of rain on aluminum awnings, not to mention the thunder and lightning. But I also really enjoy California rain.

As we leaned on the wide window sill, talking in hushed tones, a scent wafted through the window.

“Someone’s doing laundry”, I said, because I could smell perfumed dryer sheets.

And that’s what killed our lovely moment watching the rain tonight. Freaking perfumed dryer sheets. And the worst thing is that I can’t dump them into a bag and give them away - this scent invaded my house and my nose from the outside.

I’m going to have one journal per immunological issue soon, aren’t I.

*sigh*