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Me, whining

My mom and I are complete opposites in many ways, which tends to cause conflict. She likes to remain ignorant of any potential unhappiness until it's already engulfed her. I, on the other hand, prefer to know as far in advance as possible so that I can get all my worrying done ahead of time. That way, when the bad times come, I'll have gotten the panicking out of the way and have gathered enough information to confront the issues head-on.

This, however, is not about my mother. This is about me, worrying, now, about problems that may never come.

Most of you know that I have Issues. Some are physical, and some are not. I've been dealing with them all my life, and in a very real way, my life would not be what it is today without them. The pain in my joints comes and goes: when it's there, it's crippling, and when it's not, it's still just behind the scenes, ready to burst forth without provocation or warning. I used to clench my teeth and work through it, stomping through life wrapped up in ace bandages. Now I live in fear of it. Once one thing starts hurting, I know all the rest will follow soon, and it may be months before I get even the slightest relief. On the good days during that time, I walk with a limp and have trouble lifting anything heavier than a spoon. On the bad days, it's a nightmare just to get out of bed.

Add to that migraines, intestinal problems (cramping that feels like someone's stabbing me with a butcher knife before twisting my guts in a giant fist, followed by other unpleasantness), horrible periods and the supposedly unrelated infertility issues and miscarriages, and icy-cold, pins-and-needles hands that can't grip a pencil for long. Mentally, I tend to feel like I'm walking in a thick fog. My short-term memory is so bad on most days that I can't remember if I even asked a question, much less what the answer was. I'm exhausted no matter how much I sleep. I tend towards depression. I am proud to say that I have now spent more years of my life "okay" than I have suicidal. There was quite a while when I couldn't say that.

All this time, I've been told that it's all in my head. Others have told me I'm a hypochondriac or a whiner (which might be true, about the whining) or that I must have a remarkably low pain tolerance (very much not true). After all, there's nothing visibly wrong with me. I just hurt, and I have all my life. A 6-year-old complaining that a certain sound or a flashing light triggers makes her head hurt until she pukes can reasonably be assumed to be making it up to get attention, right? I was told at several points that the knee and hip pain I was experiencing was simply growing pains. This lasted until I was 19 and went to another doctor. I hadn't grown an inch since I was 13.

It's almost hard to notice that your problems go away when you're so busy ignoring them as much as possible and getting on with life. Times goes by, and suddenly you realize: Wow! I haven't hurt in over a year! I've been happy! I've been able to think, at least more clearly than usual! I've not spent hours every week sitting in the bathroom, crying and wishing I didn't hurt so badly!

It is, however, easy to notice when everything comes crashing back down.

I am currently fighting through this brain fog, trying to put my thoughts into any kind of coherent order, while I sit on the couch and try to work up the courage to go clean the kitchen some more. Standing hurts. So does scrubbing. I had blood drawn yesterday to see if celiac disease is the root of all my problems. Oh, and I've developed an exciting new Issue--a blistering rash that itches like the devil (who I assume is very itchy) and has even spread to my mouth, making it hard to talk or eat.

If it's celiac, or even some other gluten intolerance, then my problems have quite likely come to an end. Every single one of my health issues, mental and physical, are common "atypical" symptoms of celiac disease. I read a few blog posts earlier and couldn't stop crying. My heavens, it's not just me. I'm not the only freak out there. Even if my root problem doesn't end up being the same as theirs, I'm not the only one who has spent her life sick and been ignored by the medical community that's supposed to help her. They found relief by eliminating gluten. I can find relief too. I can be healthy again.

The problem is, that doesn't end the problems. If I have celiac disease, chances are good that Moose does too. There's not much I can do about that but to make sure that he gets the care he needs. Our family will not be supportive, but we're used to that. Friends will be, as much as they're able. Should we have more biological children, though, knowing the risks? We've always planned to foster or eventually adopt, so it's less a question of "giving Moose a sibling" (and I really hate that phrase) and more one of what the plan will be. There's so much to freak out about, even before I know if I need to worry at all or not.

And what about the depression I dealt with for so long? It's still something I have to be intentional about fighting off sometimes. What about my anger? I refused to 'fess up to how I felt to anyone in authority for...well, ever, because I knew all they'd do was put me on drugs. I'm not against depression meds. I'm glad they work for some people. I just don't want to take them myself. It's hard to explain. My brain, my thoughts, my emotions: those are my own. Even if they're a product of screwy brain chemistry, it's still my screwy brain chemistry. Even if I know the drugs aren't supposed to work like that, I didn't want to risk having something else in my body affecting who I am and what I feel. The pain is mine as much as the joy, and you can't have it.

If some stupid protein in wheat is the root cause of my desires to kill myself rather than the fact that I was terribly alone, then I will be very, very angry. If they're the reason I've been so terrified of the people around me instead of the fact that a few little kids, way back then, stabbed me in the back...I don't know. My need to be alone and equal need to be heard and to be around others is an integral part of who I am. What if some syndrome or disorder--in my intestines, no less--has shaped who I am as a person? I mean, I'll be glad to be rid of the feelings, but I was a really messed up kid for a long time. If only someone would have listened to me, I could've been spared a lot of heartache.

Maybe what worries me most is not getting an answer. Having such a wonderful break from whatever's wrong with me has put into vivid contract how much I hate how I feel right now. I just want it to stop.

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Comment by Herasmus B. Dragon on November 30, 2011 at 4:28pm: Fellow worrier here.

I hope you get some answers soon. Nobody should have to live in pain. Until you got to the celiac disease paragraph, I was going to say that sounds a lot like my mother in law and former sister in law, who both have fibromyalgia with Reynaud's syndrome. Lots of joint pain, and poor circulation to the extremities. But if it is celiac disease, why should that stop you from having another child? It's a manageable condition that is not fatal, it doesn't seem like a risk that should stop a family from growing.

I also hate the phrase "give ____ a sibling". Siblings aren't toys, they're friends to be earned.

Comment by rommie on November 30, 2011 at 6:38pm: Honestly, I've debated having another kid for other reasons, long before this. I swore for a long time that I'd never have bio kids at all--and at that point, not wanting to pass on any genetic predisposition for pain and depression was a large part of it. The desire to adopt was totally seperate from the desire not to have biological children, though the two dovetailed nicely.

Yes, it's a manageable condition, but it still one that he/she would have for life and that would have a major impact. It's one thing for me as an adult to realize that I need to cook all my own food. I can't just go out to eat when we're out of town--I have to know in advance how many meals I'll be away and pack a sufficient amount of safe food. If we end up being gone longer than that, we often just have to be hungry or find a safe pack of chips. It's easier now that it used to be (no gluten for me, at least for the time being, and no milk, eggs, or peanuts for Moose), but it still requires planning. You can't just run out with your friends after soccer to grab a pizza. You have to be able to stick up for yourself and look "weird" while demanding that your needs be met, even in places that do offer gluten-free options. Being the odd person out doesn't bother me much--I'm used to it by now. The desire to be normal and not stand out or get picked on could definitely endanger a kid's (or teen's) health. The Engineer and I need to ask ourselves if we're willing to do that to a second potential kid. I just don't know right now.

Besides, happy as I was to be pregnant each time so far, pregnancy still kind of sucked. I had an "easy" birth with Moose, but a really, really hard recovery. I'm not saying adoption is easy--from what I've read and the people I've talked to so far, it's its own kind of waiting and pain--but the idea of being heavily pregnant or that I might have nerve damage again is less than appealing. The only reason I'd even considered it is that an OB and my midwife are both pretty certain that the damage was caused by my poor treatment during Moose's birth and that it's unlikely to happen again under better circumstances. I've been in pain my whole life--but never pain that bad. Don't want to do that again.

Just thoughts.

Comment by wookie on November 30, 2011 at 6:56pm: I think chronic pain could quite likely be highly correlated to depression. I hope your celiac test gives you some answers, but be aware that the blood test is not the 'gold standard' to diagnose. You might want to go gluten free for a few weeks just to see if you feel better.

Comment by rommie on November 30, 2011 at 7:05pm: Gluten-free started again yesterday evening, the first meal I had after the blood test (for which I had to have gluten in my system). Today's been pretty rough, but I'm hopeful. The time I was gluten-free for Moose was very literally the only time in my life I've felt 100% okay. If doing it again gets the same results, I'm sticking with it for life, regardless of what any test says.

Comment by Andromeda on November 30, 2011 at 10:01pm: Wow Rommie. it sounds like you are going through a lot mentally right now. understandable. I hope you get some answers soon.

In order to fully diagnose celiac's disease you will need an upper GI endoscopy done. not terribly pleasant, but not that bad either. The thing is, they are looking for the upper intestine to be attacking itself, and if you are gluten free at that time, they won't spot it. you will be on the mend. get the GI done before you go gluten free. I had one done a little over a year ago. it came back negative, but i'm not entirely sure it's right. my dad was just recently diagnosed with celiac's so some changes are on their way in my family anyway.

also, i wouldn't stress yourself out too much about potential children. my doctor actually has celiac's and has 2 girls. she grew up with the disease and her dad has it too. so, you know, you are a smart woman and you will make it work. Moose and any other kids will be taught how to eat for themselves by an awesome mom. :)

Comment by rommie on December 1, 2011 at 9:30am: I really appreciate the encouragement, Andromeda. I'm glad at this point that Dr. S is listening and even ordering the preliminary bloodwork. If I need to re-glutenify myself for a biopsy at a later date, I'll just consider it one last chance to eat at a few of my favorite restaurants. I'm already starting to feel better after changing my diet for a day and a half--more awake even though I didn't get much sleep, less achey, less itchy, less likely to strangle someone. Not all the way better like I was before, and I know it could just be a fluke, but at least it's giving me hope. Good luck getting the correct diagnosis of your own, whatever that may turn out to be, and good luck to your dad adapting to the changes that are coming. I can point you in the direction of some awesome Christmas (holiday/Wintereenmas) cookie recipes if you want.

Comment by DLBK on December 1, 2011 at 10:28am: I'm sorry you're in this much pain. I hope you get some answers soon.

As for having more kids, keep in mind that most families have a bunch of diseases to pass down to future generations. Yours does, too. It's not great, but it's not the worst (not trying to belittle your suffering, please don't misunderstand). On the other hand, only you know what it's like to be you and it's up to you and your husband to make decisions about having more kids.

Comment by Joe Mama on December 2, 2011 at 11:49am: Rom - you have fought hard for your life and I hope that the diet change makes the fight easier.

Trying to track down cause and effect on your depression probably just goes down the rabbit hole - the medical condition might have made it more likely for you to develop depression, but the emotional isolation you felt as a result of the physical symptoms and the disrespect you experienced pulled the trigger.

Comment by Boring User Name on December 3, 2011 at 7:28am: Little slow to reply, but you aren't whining. My brother-in-law is celiac and his mother describes the first year before the diagnosis as awful, with him crying because he was in pain all the time. I can't imagine having lived with that pain all your life. You've lived with pain and I hope you get answers soon.

According to the NYTimes, gluten-free is trendy, annoying those for whom it isn't just a trend, so yeah for catching the wave! :-) (And hoping enough of the information/products stick around after the trend dies to make things easier for those with true intolerance.)

Comment by rommie on December 17, 2011 at 6:50pm: Well, I'm back to being not sick again. At this point, I'm still freaking out about every little thing. My arm itches a little--it might be the Insidious Rash of Doom returning! No, actually, my arm just itched a little. When I picked up a heavy bag and tried to swing it onto my shoulder earlier, I turned my wrist awkwardly. Oh noes! Typically, I have minor joint pain all the time, but once every couple of months it would spread from a single location to being pretty much wherever two bones met. No real reason, I would just wake up in more and more pain every day. This time, my wrist had a reason for hurting, and then...it stopped. So I think I'm overreacting.

The blood test for celiac came back negative. I'm probably not going to push for an endoscopy, because it sounds unpleasant and I have no real reason for one at this point. If staying gluten-free works, I'll keep with it. If it doesn't, I'll stop. I'm going to try a little wheat after Christmas and see what happens. If things go downhill again, I'll assume it's not just a coincidence.

Me, whining

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