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I am cross-posting and emailing this =everywhere=… so apologies if you end up seeing it more than once. 
[Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at invisibleillnessweek.com. If you are interested in blogging a post like this one please go here: http://invisibleillnessweek.com/?p=2301]
30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are: endometriosis and fibromyalgia. These days, the former is not a daily problem, but the latter is a daily problem more often than not.
2. I was diagnosed with it in the year: endometriosis can’t really be diagnosed without a surgical procedure to go in and see what’s going on; my last surgery was in 2002. My fibro was diagnosed in 1998 or 1999, i can’t recall.
3. But I had symptoms since: with both endo and fibro, it’s hard to tell when the symptoms started. My periods have always been painful, and they started when i was 13. I remember feeling a lot of general aches and pains since i was a child, but those could have just as easily been caused by the sort of childhood i experienced. The fibro really ramped up when i was 19 and in college, where the pain started to become drastically disproportionate to my experiences.
4. The biggest adjustment I?ve had to make is: honestly, i’ve had these things for so long, i don’t remember living without them. So the adjustments weren’t how i lived with them, but rather how i lived with other people while living with these conditions. Learning how to ask for help was a pretty big one for me.
5. Most people assume: … i have no idea. I can imagine that strangers might assume that any external signs of problems (the occasional limp, awkward gait or other signs of pain) might be due to my size… but that could be me being sensitive about my weight. I can imagine that some of my family might assume that i’m overreacting or being too sensitive… but that could be a misinterpretation on my part. I can imagine a lot of assumptions, but honestly i’ve found that it’s better for my emotional well-being if i don’t take the opinions of strangers into account, and if i recognize that family members still love me even if they don’t always understand what i’m going through.
6. The hardest part about mornings are: wanting to sleep more, but having to get up because it hurts too much to stay in a horizontal position.
7. My favorite medical TV show is: non-existant. I don’t watch television.
8. A gadget I couldn?t live without is: the computer. Since going out is both mentally and physically uncomfortable, it gives me other means of connecting and communicating with the people i care for.
9. The hardest part about nights are: falling asleep. Sometimes it’s hard to find a comfortable position, and i =have= been able to pull my back out just by changing positions in bed.
10. Each day I take __ pills & vitamins. (No comments, please) – it varies. When i was in my “pretend i’m a guinea pig” phase, the number was anywhere between 5 and 20. Currently, in the morning i take omeprazole for the perpetual heartburn, vitamin D, lysine (if my mucous membranes are feeling raw), omega-3 oil (if my aches and pains are particularly bad), and evening primrose oil (if i’m feeling hormonal or crampy); in the evening, i take one 50mg tablet of Elavil (generic: amitriptyline) to help regulate my sleep cycles and treat the sleep disorder issue that plays chicken/egg with fibro.
11. Regarding alternative treatments I: have tried damn near everything, because for ages it was impossible to find a doctor who didn’t say, “oh, just lose some weight and you’ll be fine.” Some of the more notable experiments include: massage, chiropractics, yoga, exercise, a variety of different types of diets, 5-HTP, cayenne, glucosamine (don’t try that one if you’re allergic to shellfish, yikes), magnesium, probiotics, the guiafenesin protocol, turmeric, yerba mat?, and a score of other things i’m forgetting.
12. If I had to choose between an invisible illness or visible I would choose: i honestly can’t say. On one hand, a visible illness might make it less necessary for me to constantly explain myself; on the other hand, an invisible illness means that i am less externally defined by a projected image of =any= sort of illness. In this case, if either side of the visible/invisible fence seems greener, i can assure you that i know exactly what it’s being fertilized with.
13. Regarding working and career: i don’t have many options. I need some kind of job with low/minimal physical requirements. For the past decade or so, this has translated into tech support jobs. Currently, i’m between jobs, as outsourcing is the bane of my existance.
14. People would be surprised to know: i don’t really know how to answer this one.
15. The hardest thing to accept about my new reality has been: …? No idea how to answer this, because my invisible illnesses have been with me for 15-20 years.
16. Something I never thought I could do with my illness that I did was: walk a mile without needing a day to recover. Amitriptyline has done wonders for me.
17. The commercials about my illness: are things i’ve heard people complain about, but don’t often see (that whole “don’t watch telly” thing). I have seen one commercial for Lyrica, i think. It involved a woman writing something in a diary at one point, and i remember laughing (sarcastically, mind you) at the beautiful and regular handwriting: i know a lot of people with fibro who can barely write legibly because it just hurts too much.
18. Something I really miss doing since I was diagnosed is: … there was a very long period of time between the onset of symptoms and actual diagnosis, and an even longer period of time between diagnosis and successful treatment. So i’d be talking about missing things i haven’t been able to do since high school. I guess i’d say i miss riding my bike, but that has more to do with my not-bike-friendly locale and less to do with my ability to actually ride a bike.
19. It was really hard to have to give up: the friends who didn’t understand that no, i really DID want to hang out with them, but was feeling too ill to go out that night… or the night after that, or the night after that, or the night after that.
20. A new hobby I have taken up since my diagnosis is: knitting and crocheting. Sometimes it hurts, and sometimes my hands make funny rice krispy noises when i’m doing it, but it makes me feel productive and useful. I can’t clean the house, but i can make hats and afghans that will keep the people i love warm.
21. If I could have one day of feeling normal again I would: start the morning with a good jog through the neighborhood, meet a friend for coffee at a nearby cafe, take a 5 mile hike through the woods with a picnic lunch, take a stroll through a museum or art gallery, clean the hell out of my house, have friends over for dinner, and go to bed to have gymnastic sex with my husband before falling into an undisturbed and restful sleep.
22. My illness has taught me: how to live with it instead of around it. It takes up a lot of space, and living around it means barely living at all. Living with it means i have to make a lot of sacrifices and compromises, but i’ve learned to be okay with that. For the most part. It has also taught me that health is neither a guarantee, nor is it a moral issue. Chronic conditions are NOT some form of cosmic punishment. 
23. Want to know a secret? One thing people say that gets under my skin is: (i have to pick ONE?) I dislike anything that someone says that either directly states or implies that fibromyalgia is something that you can “think your way out of”. This isn’t mind over matter. This is an honest-to-goodness real and valid physical condition with real and actual neurological components. Just because YOU haven’t done or read the research doesn’t mean it isn’t out there or that it hasn’t been done.
24. But I love it when people: understand that my not being able to keep up with them isn’t in any way indicative of how much i care for them.
25. My favorite motto, scripture, quote that gets me through tough times is: “This, too, shall pass.”
26. When someone is diagnosed I?d like to tell them: “You are NOT ALONE.” Invisible illnesses are incredibly isolating, as is pain itself.
27. Something that has surprised me about living with an illness is: how many other people i know who have similar conditions.
28. The nicest thing someone did for me when I wasn?t feeling well was: … there is no One Thing. It’s all lots of little things. My husband does a wonderful job at so many of these things, describing them and listing them is a post unto itself.
29. I?m involved with Invisible Illness Week because: i think it’s important.
30. The fact that you read this list makes me feel: hopeful that you might understand me better, worried that i might scare you off, and terrified that you might think i was making any of this up.
One day, when i was in kindergarten, i was playing “house” with some dolls. I remember my teacher coming up to me and asking me about it.
“Are these your babies?”
“Yes.”
“Do you want to have babies when you grow up?”
“Oh, no. I can’t have babies.”
“Why not?”
“Because i’d die.”
And thus began my long school career of initiating parent-teacher meetings. I had a lot of strange ideas about babies when i was a child. Nothing pertaining to where they came from, at least not that i could recall.
All of my dolls were blind. They couldn’t see anything. I remember being very affected by Mary’s blindness on Little House on the Prairie; it might have been that, or it might have been that i needed coke bottle glasses by the time i was in second grade.
But from a very early age, it never occurred to me that i could have children. Later, as i went through a lot of anger (and a lot of therapy) towards my mother regarding the way she had abused me and my brother, i decided that i would Never Have Children. If my mother couldn’t control herself around us, as her mother before her couldn’t control herself, then i decided i didn’t want to risk continuation of the cycle of abuse.
Fast forward to one of my boyfriends. He said out loud that he didn’t want kids, but he got all squishyfaced around kids, and a lot of the things he said indicated he actually did want them. Since it was a really fucked up relationship, i interpreted it to mean that he didn’t want them with me. One day, while helping some friends move, i felt a strong gripping pain in my abdomen, waves of nausea, and long story short: my first miscarriage. I wasn’t certain about it at the time, having nothing to compare it to. My period was generally regular, but it was a few days late. So if it was a miscarriage, i wasn’t far in at all.
Fast forward to another boyfriend. We never talked about it directly, but he had told me that his previous girlfriend (who had died in a tragic accident a year before i met him) was infertile as a result of an accident she’d had when she was a teenager. The way he talked about it made me think he didn’t want kids. One night, after we had sex, i felt a strange glowing feeling. The next morning when i woke up, i felt very different. As the days and weeks went by, i realized i never felt alone. There was always the presence of a little girl with me. I realized she was my unborn daughter. I could feel her with me from the moment she arrived.
Call it woo, call it weird, call it whatever you want. I know what it was. She left me 5 weeks later, on Christmas Day. The relationship did not survive my breaking the news to my then-boyfriend. I hadn’t told him about my little girl up until that point – i wanted to be sure.
I’ve had endometriosis since i was 15. My first surgery was when i was 19, my second surgery was when i was 26. The first time, they didn’t have as good an idea of what to look for, and so they thought there was nothing there – they were only looking for “gunpowder burns” – little black spots. By the time i was 26, a lot more was known about endometriosis and they lasered off about a dozen dime-sized nodules of the stuff. That’s a lot of years’ worth of internal scarring.
I just turned 33 this year. Women with endo who wait until their 30s to try to have children often find they have a great deal of difficulty conceiving.
And that doesn’t even begin to touch the fibromyalgia issues. I’ve read conflicting things about that; some women find that being pregnant relieves their fibro symptoms, others find that it makes them hella worse. Every pregnancy is different.
There’s a lot going against me, with the idea of having kids.
Right now, i’m not opposed to the general idea, but i recognize it would require a LOT of lifestyle changes. First off, i’d need to have a job and insurance. We wouldn’t be able to keep all of our pets, and given that we think of them as our children? Giving them up would be hell for all involved. I don’t even like to think about it. We’d probably want to move back up north, to be closer to family; that, and i don’t want any child of mine to come within 100 yards of the GA school system. There’s just SO much involved.
So this has been a really really really hard year for me. One of my husband’s brothers, he and his wife are very pregnant, and i plan on being SuperAuntie with that child, letmetellyouwhat. I’m already making something for the wee one, something that’s a bit of a family tradition with my peeps. (No spoilers on what it is.)
That’s been hard, but the idea of being able to spoil their child rotten is a mild comfort in that area.
What hasn’t been easy is that another family member is in a relationship where there is a child on the way. I’m not giving details because if you’re not aware of who, you don’t need to be. It’s not my information to tell. But they have decided to give that child up for adoption. That has been hell in a handbasket. For the most part, we have tried to be supportive because it’s not our decision. We have some strong feelings on the matter, but right now the right thing to do is keep those to ourselves and be there for this person.
If we were in a position to do so (me with a job and not so many fur-kids), i would be offering to adopt that child in a heartbeat. But we can’t. And a similar offer from another family member has been rejected. And it hurts. It hurts so very much, i haven’t been able to bring myself to talk about it.
My husband is scared to try to have kids with me. Endometriosis is not supposed to be even close to a fatal condition, but due to medical neglect like wtf, mine very nearly was. I’ll spare the details, because that’s a whole other post. Oftentimes, i put up a front of being intentionally child-free, because it hurts to much to think about being child-free because my body just won’t let me. I live vicariously through people’s pictures of their own children, i look at baby pictures with a mixture of adoration and envy.
With my niece/nephew on the way (i don’t know when the due date is), it’s brought a lot of this up to the front of my brain. Before this, it was something we just didn’t talk about. It was too scary to bring up out of nowhere.
It’s still scary. And it hurts for a whole lot of reasons, most of which i’ve already talked about.
I’ve compared notes with a lot of people who have fibro. One thing we all seem to have in common is that most of us have had mononucleosis at some point or another. This might strike some as No Big Deal, right? Well. From Wikipedia (link):
“Most people are exposed to the [mononucleosis] virus as children, when the disease produces no noticeable symptoms or only flu-like symptoms.”
I had a rather remarkable case of mono. I caught it during the last week of junior year in high school, which means i’m amazed i passed my finals. I fell asleep before, during and after each test. The teachers could barely keep me awake. After school ended, my stepmum took me to the doctor, and my doc was very concerned because my spleen was three times its normal size – she didn’t need to do an ultrasound, because she could feel it. Normally, it’s tucked away nice and neat behind the ribcage. For a month, i was not allowed to lift anything heavier than a paperback book. I was not allowed to move too much. I pretty much slept for three weeks straight, so that was no big deal.
I can’t recall exactly when the fibro symptoms started ramping up. I remember hurting a lot as a child, but i also remember getting beaten a lot as a child, so the pain i remember could have just been soreness from that mess. The first time i recognized abnormal pain was when i was in college – woke up one morning, tried to go to my classes, and halfway through the quad it felt like someone had suddenly broken all of my toes.
I’ll spare the details of my fibro history because it’s tl;dr, even for me at this point. Fast forward until about 20 minutes ago.
Poking around my google reader, came across a link to an article about vestigial organs. I was bored and couldn’t think of anything else to do, so i clicked it and started reading.
A new study, published in the journal Science (as of 2-3 days ago) has found that the spleen (*cough*points up*cough*) actually has a purpose: storing monocytes. According to the article, monocytes are “white blood cells essential for immune defense and tissue repair.”
Emphasis mine.
My mind is reeling about this, but there’s currently SO little information out there about this. Hell, the article was only published a few days ago. But i’ll definitely be looking for more information about this one.
Went on a wee errand today, to pick up dog food, tea and some tortillas. I’ve learned that tank tops are the best thing to wear when getting dog food, because i can saddle the 15 lb bag of dog food on my shoulder and let my back carry the weight, instead of my arms. Yeah, we did get a laundry/grocery cart a few months ago, but one of the wheels is so incredibly borked, and not easily replaceable. So we shoulder the dog food and use a backpack for weekly grocery runs.
Anyway. I’m not here to talk about dog food. But i mention it as a “yay me” side note because, well, yay that i can do this. Makes me feel a bit more useful/functional than i generally do, with that whole fibro thing.
I’m here to talk about spit. Yes, really. Saliva. I think it’s the grossest of all the bodily fluids. Seeing people spit will make me nauseated faster than seeing blood, urine, pus or vomit.
Minor not-quite tangent. When i was growing up, my grandma always kept packs of Wrigley’s Spearmint gum around the house. Said she needed something to “wet her whistle”. I associate that smell and taste with her, with comfort. So naturally, the first time i smelled it after she died, it was incredibly bittersweet.
The medication i take (amitriptyline) for my fibro has some side effects, but the one that bugs me the most is dry mouth. I’ve taken to keeping gum (usually fruit-flavoured) around the house, but i also keep some wintergreen mints for when my jaw is bothering me. One night, in a spot of really bad heartburn, some internet research indicated that the best remedy was my own saliva.? I’ve had heartburn issues since i was 10 or 11.
I’ve always been thirsty, and was mildly infamous in my teenage years for being able to drink an entire can of Mountain Dew in 15 seconds. (Now, i know that the thirsty thing is supposed to be one of the symptoms of diabetes, but i’ve been tested regularly for it, have never come close to having those kinds of blood sugar issues, and it does not run in my family.)
As i was riding home on the bus today (see, there totally was a point to my mentioning that), i reached into one of the grocery bags and got out a piece of gum. Fruit-flavoured. I’d also picked up some spearmint-flavoured mints, instead of my usual wintergreen. I like the Ice Breakers brand, and they don’t usually have spearmint, so i snagged it on a whim. Haven’t cracked it open yet.
It got me thinking about my grandma, and a silly phrase popped into my head: We are a people of inadequate saliva.
Silly, but it occurs to me that the body is a whole thing, it’s all connected. It’s not like i’ve ever compared notes with friends about their freaking saliva production. But if i’m just not making enough of the stuff, maybe that would explain the long term heartburn issues. Since it also plays a vital part in the digestive process, it might also explain some of the other stomach issues i’ve had over the years.
It would also explain the peeling that goes on inside of my mouth. Saliva lubricates the inside of the mouth, and the inside of my cheeks chafe and shed from rubbing against the edges of my teeth.
…
Okay, so this is the point in the post where i got distracted by looking up “inadequate saliva production” on google. And i read through a whole bunch of stuff about Sj?gren’s syndrome which sounds incredibly suspicious familiar.
I started wearing contact lenses in high school, but had to stop wearing them less than a decade later. The ophthalmologist determined that my eyes were too dry to wear contacts – my eyes weren’t producing enough tears to lubricate the lenses or flush away build-up caused by wearing contacts. My only options, he said, would be to wear glasses or to use eyedrops every 3-4 hours.
Other symptoms match up; i’ll spare the gory details, but let’s just say i’m a rather dry individual, and my fibro symptoms ease up in the southern humidity.
I’ve done enough research to know that medical research on the ‘net is a dubious activity. There’s lots of information out there, just enough to be dangerous. I may have a fair match of symptoms with something, but without blood tests to confirm or rule out something, all i’m doing is creating a whole lot of What If scenarios.
But on the other hand, it does mean that the next time i have medical insurance (and a job to pay for the medical costs, whee), i think i’m going to ask my doctor about this.
This is a morning where i kind of dislike my body. I won’t say hate, because that’s not the case. I’m just tired of some of its issues.
There is something wrong with my body that i’ve never been able to find an answer about: i have to sleep in certain positions, otherwise i wake up because it hurts to breathe. It’s not a lung-pain, and i’m not short of breath when this happens. It’s a pain that wraps around my waist, and the pain fades after i sit up for a bit.
I’ve learned that i can’t sleep on my back or my stomach. I have to sleep curled up on my side, with my back curved forward. Kind of a half-fetal position. I can sleep on either side this way, but any other position wakes me up from the pain after about 4-5 hours.
I don’t think this is because i’m fat; i don’t believe it is related to my size. For a while, i did think it was size-related (because i thought most/all of my health issues were because i was fat)… but i had more than a few occasions to compare notes with other fat friends who did not have the same problem. I’ve mentioned this issue a few times on the net, and i’ve run into maybe one other person who experienced something similar.
My fibromyalgia is sleep-related. The worse my sleep, the worse my symptoms. I’ve never been a good sleeper. Sometimes i wonder if this mystery pain is more symptom or more cause.
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