Via LipglossJunkie @ Flickr.
I would not say I have a “disease” – more like a chronic condition. It’s invisible, if you don’t count the involuntary writhing, the sliding off my office chair and the occasional tears. The six inch scar along my spine is almost always hidden.
The pain, which I first experienced as a youngster, was diagnosed as “growing pains.” It is a sharp, quick, stabbing sensation in my right scapula area. It feels like a bolt of lightening. It went away for a few years and returned on an irregular basis in high school. My sophomore year of college, it came back again and was truly debilitating. I could not always make it through the night or make it to class. The folks at my school’s medical clinic said I may have pulled a muscle. One morning I woke up in such desperate agony that I went to the hospital emergency room. I didn’t know what else to do or where else to turn. They gave me some extra strength Tylenol and told me to get some rest.
That summer, which I spent at my parents’ home, my family doctor prescribed an MRI (something nobody, him included, bothered doing in all those years). I had a spinal cord tumor, which would require surgery. I was able to schedule it for a bit later that summer, with a wonderful surgeon in Philadelphia. I was privileged in that my dad knew a man on the hospital’s board. I was also privileged to be covered on my parents’ healthcare plan. I don’t know how long the wait might have been if my family didn’t have a connection. I don’t know whether my surgery would have even happened had I not had insurance. Hell, I don’t know that I’d have even been diagnosed.
The tumor turned out to be benign, but the surgeons were not able to remove it all. When I returned to school I underwent radiation therapy for two months. This was fall semester 2002. Every morning I went to the hospital for treatment and returned to campus for class. Since then, my treatment has consisted of pain management and MRIs every couple of years. Right now one of my medications is a narcotic and the other is an anti-spasmodic. I have to get a written prescription for the narcotic from my doctor every month and present it in person at the pharmacy (as opposed to calling to refill). I don’t know what I will do if I lose my prescription drug coverage. I’d have no desire to live if that pain were a reliable part of my daily life.
What’s rough about chronic pain (besides, you know, the pain) is that, like I said, it is invisible. Most people expect an able-bodied young women to be able to carry a 20 lb box up a flight of stairs, but I can’t. Well, I can, but more often than not I end up in pain a few hours later. Any super strenuous activity eventually comes back to haunt me. Nothing about my appearance says “I am in pain,” so people have to take me at my word. I left work early one day last week due to pain. I know my boss knows about my back, but I still wonder whether people doubt me or suspect that I use my tumor as an excuse to get out of things.
Luckily I have more pain-free days than painful days (and by “pain” I mean nerve pain; the dull ache is constant in the background), thanks to my drugs. But I don’t know how long it will last. The body adjusts to drugs, requiring more to keep it comfortable. I already take the maximum dosage of the anti-spasmodic; there is nowhere to go from here. I hope that within the next few years (or even decades), new and better treatments are developed. I just don’t want to pump myself full of these drugs every day for the rest of my life. But I will if I have to, because preventing current pain is more important to my quality of life than worrying about the destruction of my stomach lining.
SarahMC- thanks for sharing your story. I sympathize with you although my pain is nowhere near yours (and I certainly don’t want to imply that I know exactly what you’re going through). I was diagnosed with Rheumatoid Arthritis at the age of 26 after suffering chronic and sometimes acute aches and pain. I was once hospitalized for 2 days for severe pain in my hip-joint that would have caused me to pass out had I know been put on Demerol for those horrible days. To this day, no one know why that hip pain occurred, but I assume it has to do with my RA. Several times during that hospital visit, when test after test came back negative for what the docs knew to look for, I sensed that some people thought I was making things up. Yea, b/c I wanted to spend Christmas in a hospital bed.
As I work in a scientific lab, my RA causes me pain as I work on the computer and with different lab equipment. My boss seems to be completely unsympathetic when I tell him I need to take it easy. Pain is real, my joint inflammation is real. I just don’t wear it in public like a scar or a cast.
And on the point about prescription coverage, I have Rx coverage (although I didn’t at the time of my diagnosis), yet they refuse to cover the form of medicine I’m on, so although my pain-medicine is covered, I have to pay full price for the medicine that actually prevents my RA from damaging my joints. There’s absolutely no common sense involved in medical insurance.
Thanks for this post. I had nerve pain for a number of years, the cause of which was never diagnosed despite a battery of neurological tests, and there are a lot of complications, both logistical and emotional, that come with having to confirm to someone something that nobody can see. Elaine Scarry talks a lot about this in The Body in Pain, the way that pain is something that you can never convey adequately to someone else, and that they always have to make a decision about, whether you are in pain “enough” based on their subjective assessment of the little they can see or hear.
I hope that therapy and drugs continue to improve so that you don’t run out of pain-management options.
Becky, please do not minimize your RA in comparison to my pain! I hesitated writing this because I know others are in more pain than I am and you might even be one of them.
I’m sorry about your prescription drugs. It sucks. And it can be quite expensive too.
((((SarahMC)))) You know I love ya babe. I’m so proud of you for sharing this. I had gathered bits and pieces but did not know the whole story. How do you deal with the dogs with this?
As you know I’ve developed a much slighter chronic pain problem in the last year or so. I feel like people don’t believe me when I say it’s debilitating. I can’t imagine what it would be like if I had a condition as severe as yours sounds.
I have been lurking for a little bit, but I’ll come out the woodwork now. Your post really hits home for me as I suffer from two gastro intestinal disorders that cause me constant pain. I have lost a job because of it, was almost held back more than once in high school and middle school, and basically am one of the least reliable people ever. I have been very lucky to mostly have very supportive and understanding friends, but especially in a work environment it is difficult. And my disorders are gross, so it’s not like I can publicize why I can’t walk straight some days because the pain makes it impossible to uncurl. People never want to hear about explosive anything, let alone think that its something that is real.
I’m lucky now that I have a boss who understands and has worked out a system for me to work from home when need be, but coworkers talk and I don’t know how long I can keep myself under control before I say something.
I guess what I wanted to say was that I am really sorry for your pain, but at the same time sometimes it’s nice to know I am not alone or a freak carrying around an invisible burden. Other people are too, and it always puts things in perspective to realize that. So basically, great post and thanks seems inadequate, but thank you for posting it. (And sorry for the venting)
I can’t imagine being in that kind of chronic pain. I’m echoing PSoul’s hugs to you.
I don’t have pain per se, but I have a surgically repaired heart that still has a murmur, as well as endurance issues when it comes to exercise. Anytime I had a new PE teacher, I would go through hell trying to convince them that I wasn’t slacking but that I really do have a heart condition. Like you, I have a surgical scar, but I don’t really go through life whipping off my shirt to point it out.
So sorry you’re dealing with this, SarahMC! I’ve never experienced anything like this (knock on wood), but it sounds just awful. I do have recurring skin issues that cause me quite a bit of embarrassment and pain/discomfort, but at least I can cover my skin (with meds and clothing) and go about my day. To have random chronic pain somewhere inside my body…that would drive me nuts! I, too, hope that better therapies will become available for people like you — and soon.
But soalg, you should reconsider that not ripping off your shirt thing.
@betterfishtofry: I have a family member who suffers from Crohn’s, so I sympathize with you! (And I know that I’m a higher risk of developing it myself, so…keeping my fingers crossed.) GI issues are decidedly not fun! I’m glad you finally found a boss who understands.
(((betterfishtofry)))
See this post.
Do not apologize!
I hope I did not give the impression that I am in terrible pain 24/7, because that is not the case. I think I would be if it weren’t for my meds, but what I deal with is a sort of break-through pain (still excrutiating but not every day). And like I said my back is sore all the time but that’s tolerable.
I deal with the dogs the way I deal with everything else, which is by waiting for the pain to pass: lying down, suffering through a short walk around the block, yada yada.
Thanks for sharing your story! What’s crazy is how many people are in pain on a regular basis and we don’t even know it!
I get two sides of this. One side is as a person who deals with back pain as a result of both scoliosis and a car accident several years ago in which I compression-fractured three vertebrae and became 1/4 in. shorter on my left side. I am not in pain every day, but when I had jobs that required lots of standing, I always went home in pain at the end of the day. Sometimes my back hurts for seemingly no reason at all. I worry that it might not be strong enough for me to carry a baby. And yet I know that so many other people, like my grandmother who has fibromyalgia, are in so much worse pain every day. When I stop to think about it, it makes me want to be a little nicer to people when they are a little short with me– maybe they’re physically hurting.
On the other hand, I know how difficult it is for doctors to diagnose and treat pain, which in turn makes things all the harder for people in real pain, like you having to take the actual prescription in each month, SMC. Drug-seekers have ruined it for so many people in genuine pain.
Thanks for sharing this, Sarah! I grew up with a sister who suffered from a congenital nerve disease that causes chronic pain, which has only worsened now that she’s in her late 30s. Your point about health insurance is huge. My sister works in public education, which fortunately has excellent all-inclusive health insurance, but she is literally a hostage to her job because of her need for pain management. She would like to switch careers or move to a different state with her husband, but it would be very difficult to find another job with the same level of coverage if she did.
Just one more way in which our health care system victimizes people with chronic conditions.
Oh, Sarah…
*sending wishes for healing to you*
I have this same problem! I am always in pain. I’m not sure why, though. It’s never been diagnosed. It hurts like a bitch.
Thanks everyone.
Getting a hold of narcotics every month can be such a hassle, Funnyface. I really appreciate my doctor for believing me and trying to help me in any way he can.
And YES, Becky, people with chronic conditions are so penalized by our system. Whenever I daydream about radically changing my career (to a non-career) the realization that I’d be in screaming pain without my health insurance brings me back to earth.
I’m glad you shared this, because it reminds me that my (for most intents and purposes) healthy and pain-free body confers a lot of privilege. I hope I can always be an advocate, personally and professionally, for people living with different kinds of physical limitations, including chronic pain in all its godawful incarnations.
May, send me an email if you want to talk about it some more.
Thanks for sharing, everyone. It’s good to hear these kinds of stories — I think even a lot of us with “invisible” health problems forget and think we’re the only ones.
I remember a training I had to do in drug and alcohol counseling, where I got into a huge fight with the professors because they wouldn’t acknowledge my point that some people *cannot* be without narcotics — whereas the professors were saying that even if someone is prescribed narcotics for a medical condition, once they slip over into “abuse” they should be taken off. Do cognitive therapy instead. Luckily I do not have serious pain issues, but I’ve known plenty of people who do, and yes, some of them supplement their prescriptions with street drugs. Because they’re in fucking pain. It really angers me how little doctors can do for some people, and yet they’re treated like dirty scum* for using pain meds.
*And for the record, I don’t think that using drugs for whatever reason is a moral issue.
Thanks for writing this. I know how hard it can be. I’m not sure where I really fall in the “chronic pain” category, but I get migraines. I have to take preventative meds everyday (and the side effects of those truly suck), but I still miss out on a lot of things when I get them. I really hear you on the invisibility thing; I’m still an undergrad and I had to register my migraines as a disability this semester because I was missing so much class. I still had a lot of people (even professors) question me, not so subtly suggesting that I was faking the migraine pain to get extensions on assignments.
I lose my health insurance when I graduate, but luckily my parents have offered to help me out until I can afford it myself. I can’t imagine life with constant migraines, so I can only imagine what you must be going through. Seriously, major, major props just for getting through the days dealing with the pain. I know how depressing and awful it can be.
Sarah, thank you for sharing this. I don’t know if your health insurance covers it, but acupuncture has helped me with my chronic pain issues (it even cured me of chronic yeast infections!) I know a young man who was shot in the hip while serving in Iraq, pretty much shattering his pelvis. He is on some heavy-duty stuff, but he told me that the acupuncture therapy he receives is better than any of the drugs the VA gives him. Even if your insurance doesn’t cover it (my doesn’t), some acupuncturists are willing to work on a sliding scale, or let you pay over time. Even if you can only afford to go a couple of times a year when you’re really hurting, like me, it still helps.
May, I too, have been suffering from chronic pain for nearly two years and remain undiagnosed. I had a couple more tests scheduled but frankly, I was so tired of going the doctors that I just gave up.
Also, thank you, Sarah, for reminding us that just because someone appears to be an able-bodied young woman doesn’t mean she is. It reminds me of a letter someone wrote to Ann Landers, complaining how many “able-bodied” people she saw with handicapped parking permits; she was outraged! And Ann (she was still alive; it wasn’t her “mailbox”) had to remind her that just because someone looks perfectly healthy, they may not be! They may have a back injury which requires them to limit their mobility, they may be on chemotherapy, etc., etc.. I guess it boils down that old saw about not judging a book by it’s cover.
I have chronic pain in the form of migraines. Well, they start off as migraines and devolve into headaches that last for WEEKS. I currently have a very understanding boss but am about to get a new one and I’m worried. I really cannot function with the pain but have learned to drag myself to work when necessary. All other activities are eliminated so I can lie in a cool, dark room. I have been to 3 specialists at major hospitals and no one has any idea what is causing them.
This post really made me feel like I’m not alone.
I wrote a non-public post on the elljay recently about my chronic pain issues (which I am forunate enough to not need daily medications in order to manage) and this post, as well as the comments here remind me how when I was younger most people decided I wasn’t in enough pain to pay attention to, even after the xrays that showed the hole in my spine.
In my pain management I am thankful for two things: yoga/meditation and the years of ballet training I had when I was a teenager. I’m lucky enough to be able to ignore most of my nerve pain most of the time, but it’s true: those moments that aren’t consumed by pain are like little life-gasms.
Kivrin, Better Fish, etc (if I missed you, sorry)
While I don’t have Crohn’s or as serious a disorder as Better Fish’s – I sympathize and completely understand those hidden pains (and difficult to explain issues).
I know my pain cannot hold a candle to anyone else’s (I’m not here to compare scars), I understand and would offer a hot water bottle to any of you any damn day.
In college I would double over in pain, suddenly and without warning – like a bat to the belly button. I’ve always had stomach aches but my mother tallied it up to always being a nervous and bottled up child. All in the head, basically. Well, it wasn’t until my junior year of college that I started to realize my pain was related to the foods I ate. And the pain doesn’t immediately follow ingestion, so it made it really hard to pinpoint. But I can tell you, it hurt like a bitch and it had to be stopped. So, each day I ate one type of food (out of my usual diet) and waited. On Grilled Cheese Day, I wanted to fucking crawl in a hole and DIE. Scared the crap out of my roommate when she found me lying on the floor, in the fetal position, sweating in pain. Oh, man, her face…
How you explain a severe intolerance to CHEESE? I can drink low fat milk, eat icecream and love yogurt and sour cream. No, I am not lactose intolerant but I can tell you a lot about it. #1, there is VERY LITTLE lactose in cheese, thanks.
How can I explain that any amount of parmesan or ricotta or cheddar will send me to the floor in about two hours? Instant results seem to be the only way people understand.
I’ve explained and clarified and speculated to every friend, family member and waiter, ever. I’m not lying, I really can’t have the grated parmesan on my salad, thanks. No, you can’t ‘re-diagnose’ me, thanks.
Why can’t one just say, “Please, I need some time, I’m in pain,” or “Please, I can’t do that, it will hurt.” Why can’t it just be taken at that? I don’t want SarahMC, Better Fish or SOALG to have to go through the same story EVERY time there is a problem. Heck, even my story is long winded (sorry).
And NO, I do not miss cheese. It and I are mortal enemies. We will not be friends.
Hugs and all to you guys. Pain sucks.
Thank you so much! I have a third of a working leg on one side (arthritis in the ankle and bursitis in the hip, both from injuries), and it’s hard to explain to people that sometimes I can dance and walk and get up the stairs, and sometimes I can’t.
Having friends who understand helps a LOT. I spent a very long adolescence being told that the pain in my ankle was all in my head, that I needed to stop being so dramatic when I said I needed to eat (hypoglycemia, but that’s not painful, just annoying) because if I don’t I get bitchy then I faint. Now I have people who make sure I eat and acknowledge my limits, and the difference is amazing.
If I had narcotics, I’d be passing them around the room. I’ve never had any chronic pain conditions, and I can’t imagine how much mental energy they must take up.
I had a student a few years ago who was a varsity soccer player, who suddenly was suddenly missing from several classes. I’m strict about attendance, and when she returned, she brought a note from her doc (she was obviously used to this routine) and explained that she had had problems w/ stress fractures and surgeries to her spine since HS, and occasionally had to be hospitalized for pain, rest, adjustments, whatever. Lest I didn’t believe her (I had no reason not to), she showed me her back: whatever it was, it was NO JOKE. She never complained, she never made excuses, and she kept up with classes and sports. She was a smart one, but I had no idea how strong she must have been–physically, emotionally, mentally–to deal with her injury on top of anything else. Major props to all of you dealing with similar challenges. I don’t know if I could handle it.
So sorry to read that SarahMC, and everyone else, I’m sending positive energy into the interwebs. My aunt had chronic migraines for years and she would have periods of time when she would go off all her meds because like you say, her body had adjusted. It was pretty bad. I think its one of those things that people don’t think about until they’re affected by it, because it is invisible to most of the people around you.
Thanks for writing this, SarahMC.
I completely relate to the beauty of a pain-free day.
Like Becky, I have RA, but I’ve had it since I was 5. Medications weren’t as sophisticated when I was a kid, and they didn’t want to give me the really strong stuff, since it could really mess up my growing body, so a lot of my smaller joints got damaged.
33 years later, the big joints are starting to be affected. The pain and fatigue are really bad some days and okay others, and, like yours, it’s always lurking.
I pay a fortune for health insurance, and worry what the strong pain killers are doing to my digestive system. Often I just ride out the milder pain because I worry the medicine will hurt me more. The immuno-suppressant I started taking to prevent further damage has the potential of Swiss cheesing my liver, and I can absolutely, positively never never get pregnant while on it.
But you know what? I’ll be damned if I’m going to let it stop me enjoying life as much as possible. And from your entries and insightful comments, I get the feeling you’re the same. May your pain stay away as long as possible!
Betterfish–I have IBS, and it’s mostly not a big deal but occasionally it really flares up and I am miserable. I’ve found that my allies are middle-aged and above women at work–I’m lucky in that I do something medical-esque, so people aren’t easily grossed out. Just talking about it makes the situation better in my head…
…which brings me to kathleen–I’m hypoglycemic too. I just straight up tell people early on to feed me if I’m cranky. It’s been working: I haven’t actually passed out in years because I’ve gotten better at noticing the sugar drops and so has everyone else, so I always manage to get a snack before it’s too dire.
I’m wondering if something is true for anyone else here: I find that staying busy helps to keep my mind off my pain, and pretending to be in a good mood fosters a positive attitude which makes the pain less painful.
Anyone else experience that?
DangerMouse: I tell people around me that when I stop smiling/laughing, they need to feed me something. I keep (or try to keep) snacks and candy on me, just in case. But having people around me who care and take me seriously has made all the difference for me, let me tell you.
[...] TR Xands: You don’t have to mean it to hate Anonymous Shaker Couple: Separate and Not Equal Liss: This is What a Feminist Secretary of State Sounds Like, Feel the Homomentum, Why Use a Teaspoon When You’ve Got a Tablespoon? and We’re So Winning Pilgrim Soul: On Thinking of Human Beings as Trash, And Other Tragedies of Resources Jo Tamar: Blogging Against Disablism Day – and generally blogging in support of other groups Sarah MC: Pain-Free is a Privilege [...]
Rachel, sometimes that works for me. My headaches are frequent enough that I cannot stay home every time I have one (or I’d never go to work). Sometimes just going to work helps me feel like I’m still a productive member of society. I’ve noticed that when I stay home and lay around, I feel more depressed. BUT sometimes, the pain is so bad that I just cannot venture out in the sunlight.
I wanted to say one more thing. The title of this post is spot-on. I shudder to think where I would be if I didn’t have the incredible health insurance that I have. I work for a university so our benefits are top-notch. I have had the luxury of going to the best hospitals in the area and getting all the tests I need with no problem. I thank my lucky stars every day for my insurance. I’m also lucky enough to live near a major metropolitan area with excellent medical facilities. I realize this is a HUGE advantage in this country.
I’m sorry to hear that SarahMC! I know you’ve alluded to it before, but I never knew the specifics. And you’re right, when meeting you one would never guess you were suffering. My mom is in chronic pain from a car accident that no amount of surgery has been able to cure, and it breaks my heart that she can’t get out of bed some days. I also have a chronic medical condition, and I lose my health insurance tomorrow when I turn 25 and am off my parents’ plan. (As an independent contractor, my job doesn’t offer insurance.) Happy birthday! Don’t get hit by a car or get swine flu! Luckily, I qualify for a HIPPA plan that covers pre-existing conditions, because the retail prices of these medications I’m on — even the generic ones — are staggeringly high.
De-lurking for a sec to mention something for the women suffering from migranes. There’s a pretty solid connection between migranes and estrogen in your system and sometimes having irregular cycles or not ovulating regularly or some other hormonal imbalance can create a pretty strong feedback loop for migranes.
I love this doctor, Jeri Prior, who is doing a ton of research on the link between ovulation and other physiological processes (as opposed to just thinking about it as a reproductive issue). She has a website (http://www.cemcor.ubc.ca/) that has a lot of interesting info and also resources and worksheets and stuff.
There are great charts to keep track of your cycle that leave room to note down migranes or pain or depression or any number of things to see if you can find a pattern. This has helped me pretty immensely in managing my migranes. Once I found a pattern, I made some changes to keep my cycle a bit more regular and the intensity of the migranes has really decreased.
Wishing everyone good health!
The other thing I have are tension headaches that pretty much exactly mimic migraines, except auras (hubby gets the auras – when they get bad, he gets aphasic). Since I just lost a dear friend to cancer and my dad is struggling with a very deadly form of lung cancer, I’m getting them pretty frequently. In fact, I ended up begging cash off Mom to go get the Fiornal my doc gave me after coming in to help with trees and hearing my dad try to throw up most of what he’d eaten since the last bout of chemo ended. While dealing with a nasty nosebleed. And a bladder infection. Yay!
I’ve been alternating Fiornal, vicodin, and valerian, and hopefully I’ll get some sleep tonight. Sarah, you’re completely right: living pain free is a privilege that we don’t realize we have until it’s taken away.
this makes my heart ache. i have chronic pain, and have since the age of foutreen. i am twenty-two now and my drs basically want me off my pain meds, if i were older they wouldn’t mind but because of my age they don’t want me addicted to the narcotics. my underlying condition, SLE (systemic lupus erythamatosis) is under control, all my bloods are fine, BUT THE PAIN IS STILL THERE. fibromyalgia sucks. i am young and i look fine, and not even my friends understand. and i ALWAYS worry that people think i am making it up, having the drs want to limit/take away my painkillers makes me feel like even they don’t believe me. i think some people quite close to me don’t beleive or understand. i have been crippled by this pain, and by how alienated from everyone else i feel.
Thankyou for sharing, Sarah.
Betterfish, and all those with gut problems, I’m sorry if you feel like you can’t talk about them to people. I was gluten-intolerant for three and a half years and I’m not sure it hasn’t come back, so I know what it’s like to be in pain from it and exhausted and needing to hide in the bathroom for however long and just feel disgusting. Not saying my experience is exactly the same as yours, but probably we have something in common. For whatever reason, I’ve found that people around me aren’t as squeamish abou tit all as I expected. Maybe it’s that I make jokes first – “it’s all shits and giggles, emphasis on the former” and explain more when people ask, or maybe I just cultivate the accepting kind of friend more than others. I wish it were something we could talk more openly about – I mean, people can talk about food poisoning, and what’s an allergy if not your body reacting to poison?
Anyway ramble over. I’ve been reading a lot of the BADD posts and had my eyes opened to just how clueless some people can be. Thanks for helping me
x
Little_sis, I’m sorry to hear that. I know “helpful suggestions” are often unwelcome when it comes to people’s chronic conditions, but you have a right to manage your pain. If it’s possible, please get a new doctor. There ARE doctors out there who understand your condition and know that drugs are necessary to keep you comfy. The fear that you will become addicted is a bit irrational and is no reason to go off your meds (because of your age? wtf?). Email me if you want to talk about it more.
kathleenb, I’m so sorry about your friend and your dad. Hugs.
SarahMC,
It’s truly shocking how many stories of young girls with chronic pain are alike. While I ended up having multiple autoimmune that affect my nervous system, my digestive system, and my connective tissue, I, too, spent so, so many years being told that my “discomfort” was nothing but growing pains and pulled muscles.
Oooh that it were, right? I’m very, very glad that you were able to get the surgery and that – at least for now – you’ve got things mostly under control.
Like you, I have visable signs of my condition, but under wraps (mine’s a PICC line under my sleeve) and so I look like a basically healthy 20something. The stigma can be rough. I deal with – and laugh at – my misadventures in the medical system by writing a comic about my illness called A Comic Life, Indeed. I’d love for you to check it out; hopefully at the very least it can remind you you’re not alone on one of those break through pain days.
You can find it at: http://acomiclifeindeed.wordpress.com
Be and stay well!!
-Miss Waxie
Eek, didn’t realize our emails aren’t posted on this new site yet.
Mine is sarahmc@harpyness.com.
[...] children but I always thought that if I did have kids I’d begin at 30, give or take a year. My dysfunctional body presents an obstacle to pregnancy, however. Since the chance that my tumor will disappear is [...]
To sukie (in the graveyard):
I don’t know if anyone is even reading these comments any more, but just in case:
lactose is not the only protein in dairy. From what I understand, there are several different proteins in milk and its various products. For example, one of these is caseine, which is the thing in cheese that makes it melt and stretch. Caseine is also commonly used in some lactose-free cheeses, including a range of soy-based, rice-based, and vegetable-based cheeses because of this property.
I don’t have dairy allergies but I’ve learned a few weird pieces of trivia like this about food because I’m a vegan so, as a vegan, I’ve needed to learn this kind of stuff so I can identify what foods fit into my diet and what don’t.
My main point here is, if you’re not allergic to lactose, then it may be that you’re allergic to some other specific protein in dairy. Since cheese is a big trigger then caseine would seem to be one potential suspect, though I don’t know enough about allergies or the different proteins in dairy to really guess.
There ARE a few truly dairy free “cheeses” (look for cheeses marked as “vegan” in natural food stores, don’t bother looking in regular food stores). Most of the ones on the market, to be honest, aren’t that great. An organization such as the Vegetarian Resource Group (http://www.vrg.org) could also help advise on specific brands to look out for if you’re in the US. Or they also sell an “uncheese” cookbook … if you miss the cheesy taste, then that would have a bunch of recipes for making your own entirely dairy-free “cheeses” … still not quite “authentic” but generally much better than any of the ones you’d find in any store.
It doesn’t seem at all odd to me that a person could have bad reactions to dairy without being necessarily lactose intolerant. But it must be frustrating to deal with the disbelief of others.
[...] have written before about my invisible disability (if you could call it that), and this FWD has given me so much food for thought already about my [...]