Sep 28 2006, 07:03 PM
Well being ill obviously sucks, not only physically:
Your bodies road to recovery, can take it's toll on your nerves, too.
You could have a life-threatening condition, which is a massive thing to deal with emotionally.
Sometimes an illness just lasts for ages, testing your patience and grinding you down.
Some treatments are complicated, and the odissey of going to specialists, experts and professors, demand organizing skills, that you might not have at the moment.
Finally, you might enter a state of shock, because you've just received your doctors bill!
Well, that's what this thread is about: the emotional strain of physical pain.
Sep 28 2006, 10:08 PM
Hi pherber. This is a really important topic. There's actually already a thread that deals with chronic illness--it was just hidden at the bottom of the 2nd page of threads in this forum. I've bumped it up to the top: look for the "disorder sisters" thread. Hopefully we can take the conversation there... that way we keep the number of threads to a minimum. See you over there... in the meantime, good luck with your illness.
Sep 29 2006, 12:08 AM
FFS, don't be so patronizing!!!
Before you lecture me, I'd suggest, you go and check the community forum to know what's been discussed!
Not to mention, that this thread is not even about chronic illnesses!
Sep 29 2006, 01:22 AM
hey, chill. octi is just following protocol. a response like this gets posted in almost every new thread, it's not a personal diss towards you.
gr8 that you checked it out in the Cforum first, hope you get lots of traffic.
what the hell does FFS mean? i need a list in here sometimes.
(i love that the title of this thread is quoting me, ha ha.)
Sep 29 2006, 03:00 AM
I'm guessing it means "for fuck's sake", pepper. I always bristle when I see that seemingly schoolmarmy second post on a lot of brand new threads, even though I know why it's important to keep the number of threads down. But it isn't personal!
I think this thread's discussion topic is wonderful, and really necessary here. I can't imagine why it wasn't brought up earlier, and though I know it might actually show up on the other chronic illness thread it isn't that thread's point...so I think so many people will benefit from your ingenuity, Pherber! Hope lots of traffic results.
Sep 29 2006, 04:09 AM
please let me explain, why the second post made me so fuming mad:
1.) we do not have to become hysterical anymore, because we have a new board rule concerning new threads! So it's not necessary, to patronize newbies anymore.
2.) I'm not a newbie! If octinoxate doesn't know me, she can check out my profile, it states, that I'm most active in the ...*GASP!*... COMMUNITY FORUM!!!
3.) Forgive my language, but I really hate the hypocrisy of people, who can't be arsed to ever check out the "Ladies Who Lounge" or "BUST line" forums, and then tell me how this board works.
4.) All your posts here indicate, that none of you popped by the CF lately, or else you would've noticed, that I didn't even request this thread. I did not come up with the title, either.
I did however spend one hour (!) thinking of a meaningful first post, that will hopefully explain that complex topic. Now this thread is full of meaningless shite that shoud've been discussed in the CF.
5.) I feel more than bad for kittenb, because it's her thread actually. Well, look at it now!
Next time someone wants to follow protocol, here's how:
1.) we request threads in CF. Other busties can voice their opinion about it. If you don't do it it's your own fault.
2.) there's no thread police.
One example: There's already a general TV thread, but still every series known to man gets its own thread. There's no point wondering, if they're necessary, because they are justified by popular demand, and not by a self righteous thread gestapo.
Just in case you've been wondering why I get so furious and uptight? Well that's to do with "the illness"?
I find that rather ironic, you telling me to "chill" in a thread that's supposed to deal with emotional imbalance. I'm laughing myself sick! (yes I love puns...)
You guessed right with FFS, btw.
Sep 29 2006, 09:09 AM
Ahem, ok, I'll go ahead.
I have had problems of a gynaecological nature for the past 12 months. I have had endless tests, biopsies, and 2 surgeries. I am in pretty much in constant discomfort.
Emotionally, it has been very hard. I lost 2 much wanted pregnancies, just before all this started, and am angry that my gynae problems have meant I mustn't conceive until I am back to normal.
It has been one thing after another. Every month or so, I have a new symptom, none of them reassuring.
To top it all, I live in a country where I don't speak the language (although getting there, v. slowly) and am unfamiliar with the medical terms, and process.
Everything seems out of my control, and that drives me up the wall!
What about anyone else?
Sep 29 2006, 09:09 AM
Well, okay then. Hi. As pherber said, I wanted this thread, I just couldn't seem to get a new thread started myself.
Anyway, this has been a topic I have been giving a lot of mental space to these past few months. I considered adding to the "Chronic illness thread" but this seemed different.
So here goes:
Since mid July, I have been diagnosed with gastritis (a painful inflammation of the abdominal tissues) discovered that my spleen is enlarged, had the worst sinus infection of my life, found out that I have 7 inch fibroid attached to my uterus, had a mold removed from my arm and am dealing with a 2-3 week old yeast infection. I have had two ultrasounds (one of them was a transvaginal US that was just unpleasent) and a CT scan. I have put so much money into medical co-pays that I just want to scream. I have health insurance so I try to look at the minor $20 co-pay as a small blessing but they add up and I don't make much money.
On Wednesday, I saw my primary care doc for the yeast infection. The first meds she perscribed did not work. While I was there, I agreed to a Pap smear because I knew that I had put it off for far too long (I have a strong gynecologist fear.) What neither my doctor nor I considered was how much it would hurt
to get a Pap when my girly bits were all so irritated from the yeast infection. I gasped in pain, tensed up completely and burst into tears. It was not fun.
Next week, I am meeting with a gyne regarding the fibroid. After a lot of consideration, I am going to ask her to remove it surgically. It interferes with my bladder function and just freaks me out too much. As I am a sexual assult survivor, I have spent enough time in my life thinking that there was something wrong with me, deep down inside. While I got over that fear years ago, finding out that there really is
something wrong with me, deep down inside, is just more than I want to handle. I want it gone. I have been trying positive visualization with the fibroid. I belive that loving an illness is a way to treat it. So I know that fibroids are often caused due to repressed anger and stifled creativity. I work with sexual assault survivors for a living. My anger is a driving force in my life and I love my work. So, if the fibroid is caused by work (and personal life) anger, than there is obviously love in it as well. That has helped.
Overall, I am dealing with the "my body has betrayed me by getting sick" feeling. I know that that is not true. I am the one who did not care for myself by putting off my annual visit for far too long and not processing all of my negative enotions. I am a work in progress on that. I have picked up my crochet hooks and my writing pen so I can remember what creating things feels like. I think all of this will help in the long run.
Sorry about the novel that I am writing, but one more thing. I did not know that fibroids and other gyne health problems ran rampant in the women on my father's side of the family. So, ask the elders in your familty tribe what their health histories are. It is soooooo important. I have learned so much in the past few weeks. I just wish I'd know some of it sooner. cross-post w/Margot: hugs and healing vibes to you. I can't imagine how hard all of that has been.
Sep 29 2006, 12:04 PM
Hey pherber (and all). I don't want to derail this thread from the real topic at hand, but I do want to take just a minute to clear things up so there's no hard feelings after we got off on the wrong foot. I just want to say that I didn't at all intend for my post to come off as patronizing or hysterical or as a lecture, and I'm sorry to have come across that way. I did see that you aren't a newbie, so that's why I sincerely thought you just hadn't seen the chronic illness thread (it *was* pretty tucked away). And I wanted to gently point that thread out before someone else came along with another more brusque 2nd post about new threads (I bristle at those sometimes, too!). I guess things just come across differently in writing sometimes. Anyway, I think I understand now why y'all wanted a distinct thread for this, and besides, at the end of the day it doesn't matter so much what the thread is called, right? As long as there's a place for these important issues to get discussed.
Hugs to all the busties dealing with illness.
Sep 29 2006, 01:23 PM
Ah good to see this thread is needed. Welcome margot and, hugs to both of you! (Great timing ladies!)
I hope noone took my raging fit too much to heart!
(I just see octis post come up while I'm writing this... thanks octi, no hard feelings from my side I'm just very irritable at the moment!)
kitten, I remember reading some of that in the survivors thread. I'm a survivor myself, so I read that thread regularly, but I just can't get myself to post anything.
I can relate to that co pay drag, that's the reason, why my health problems got so bad in the first place. I just didn't have any money at all.
Maybe I should quickly explain what's wrong with me:
Two years ago my best friend died, of a heart attack. He was only 41 yrs, which made the whole thing so hard to believe. I also have had a hole in my eardrums for years, and recurring ear infections. Then I had the most horrible panic attacks, caused by extreme hyperthyroidism. The thyroid shit got so bad, that I nearly became psychotic, not to mention, being just ill for six weeks now (The meds have kicked in, but I still feel like shit.) On top of that, I'm autistic (aspergers) that seems to not make things easier.
So I can relate to, how complex everything is tangled up.
I have a few suggestions for both of you, and I hope you won't take offence, if they're unsuitable for your current situation, insurance, etc
kitten, I think what you're going through is what I call the "dark thoughts" period. I had that pretty bad myself. I saw all kinds of conspiracies, spooky connections, etc. I hope you don't think Im ridiculing you. I know it's your job to help survivors, too. You're right of course with the family history thing: In my family a lot of people have cysts (pick any organ).
I don't know if it's possible for you to check in a hospital, but there are some, that specialize in traumatised patients. I've been to one, and there was the emotional support part (counselling), and doctors, who are specialized in trauma patients. I've even been to a dentist in that hospital, and he started with breathing and relaxation techniques first, before drilling away. Else I would've just collapsed.
Instead of getting tangled in dark thoughts, you could also try to see it very matter of factly. Your body being like a broken car, that needs to go to a garage for a few weeks... (I know my choice of words is blatantly insensitive, it's just because I can't describe it any better, sorry)
Well, I mean to consciously remove yourself from all these thoughts, and treat your body, to get it back to top form, then your mind will catch up by itself, because your illness and pain caused these thoughts.
(Oh dear, I hope that made sense)
Financially, a hospital might be a shock at first, but it's maybe better, to get thorough treatment, instead of that grinding odissey, that just doesn't seem to end.
This is just a suggestion, of course!
margot, I really feel for you, I think, in your case it might be the best idea to get professional help. (Depending on the country you live in of course)
Most countries have citicens advice bureaus, and help centres for people, who don't speak the countries language well. They should inform you about your possibilities, because the biggest drawback, about not speaking the language, is missing out on all your rights! Plus, they should explain the medical terms and bureaucratic jungle.
Nobody has to go through something like that on their own.
You might even be entitled to get more help, like a caretaker, or socialworker, or maybe there's a meeting place, for women with similar problems, where you can support each other.
I hope you don't think I'm a big overbearing smartass, but I'm suggesting these things because I've had positive experiences with them.
Sep 29 2006, 01:57 PM
Pherber, I'm sorry to hear about your best friend. That is such a huge loss. I lost my dad a couple years back and I know that for me, that really influenced how I deal with health problems (or don't deal with them!). Everything became so much scarier, esp anything to do with cancer (like this biopsy I got) because that's what he died of.
Has anyone here read "Spontaneous Healing" by Andrew Weil? I found it to be a helpful book because it empowers you with strategies you can use to help your body prevent and heal illness, and it draws from both Western and Eastern or alternative approaches (not too extreme one way or the other). Kitten, he talks about the positive visualization techniques that you brought up, as well as about using herbs, osteopathy, diet, meditation, etc...
Margot, wow, that's tough to have health problems in a foreign country. I've only limited experience with that, with a condition nowhere near how hard yours must be, but it does make things about 10x more scary and frustrating. (BTW-What country are you in?)
So here's my story: I fucked up my knees by overdoing it with physical activity almost five months ago now, and instead of promptly healing as they supposedly do in these cases, they've gotten worse and worse for some reason, severely limiting my mobility. Now I'm having additional problems with my stomach due to using waaay too many painkillers, as well as my elbows, wrists, and back due to crutches. And still having pain in both knees, which I can now no longer take pills for. The stubbornness of this pain makes me wonder if they've misdiagnosed me, if there isn't something else going on here... Also, I'm awaiting the results of a cervical biopsy and potentially getting a mole biopsied. (And my period is four days late...)
Right now I'm struggling with/ working on:
-finding a good doctor, as the ones I've seen haven't helped me
-keeping a positive, optimistic attitude. Trying to keep faith that my body WILL heal, and in the meantime, trying to love it--all of it-- instead of getting frustrated at it/me for the problems, the weight gain accompanying this injury, etc. Also, trying to focus on things that are going right in my body and my life in general. For the most part I'm managing this, but sometimes-- oh, you just want to cry, or yell, or something. (Pherber, I can for sure relate about pain and illness making a person irritable...)
Sep 30 2006, 12:09 PM
I had no idea, you wanted to actually join this discussion *slaps self on forehead*
Your post (I mean the second here) makes much more sense to me now...
The thing with my friend was, they never bothered with an autopsy, so I'm still not 100% sure, why he died...
I can't believe it is legal in my country (germany) to bury someone, who died mysteriously, without an autopsy. It still doesn't make sense to me, how someone so young can just drop dead.
I was obsessed with having a vein burst in my neck or head and had a constant fear of dropping dead myself, because of that. (I know it sounds silly)
It took several doctors, to convince me, that it was just my nerves, grief, plus thyroid hormone overload, that caused all the anxiety.
Sep 30 2006, 01:26 PM
Pherber, that doesn't sound silly at all. When you have a really vivid, terrible understanding of what a fatal health condition is like, it makes you worry about new things. For example, after my experience with my dad's cancer, I got (and still am) afraid of microwaves, of cell phones, of artificial sweeteners and of pesticides... all the things in one way or another (based on more valid or less valid evidence) associated with cancer. Yeah, I'm sure to people who haven't had these sorts of experiences, it's weird or silly or whatever. But it's all a matter of perspective, right?
Pherber, is an obduction the same thing as what we would call an autopsy in the states?
Sep 30 2006, 02:00 PM
Oh, yes autopsy!
I looked up: "obduction" doesn't even exist in english.. *cringes* (I edited it, too)
I'm afraid of artificial additives, because I had an allergic reaction once, and I always think I could have an allergic shock... it's part of the "dropping dead" paranoia.
That fear did something good in the end, btw: I gave up smoking and drinking.
I try not to get too paranoid, though.
Oct 1 2006, 09:11 AM
pherber, no I don't think you are ridiculing me. There have been times in my life where I wished that I had admitted myself to a hospital. This is not one of them, though. Well, except if I do have surgery.
I meet with my new gyne this Tuesday. I am very curious as to what she will recommend. I guess if the doc says no surgery, I'll just have to get used to it and the related urinary issues...
Oct 1 2006, 11:28 AM
So in the US your only allowed to go to hospital, if you need surgery?
Sorry if didn't get this right..
Oct 1 2006, 12:40 PM
Well, in your previous psots were you refereing to a mental hospital? They do have thoes, I have just never been in one.
Oct 1 2006, 02:45 PM
I know mental hospital sounds awful...
I've been to one, where there was a ward for women with PTSD and similar conditions. There was even a wing, where no men (staff included) were allowed, for the severely traumatised.
There are also mixed hospitals, that have psychiatric wards as well as everything else.
A lot of people have this scary impression of psychiatric hospitals, because of the dangerous or suicidal people who get locked in, until they're stabilized, but those people are on different wards.
Normal psychiatric wards are not really different from any other hospital ward.
In your case a gyne hospital, that has a ward specializing in trauma patients would be better, though.
Oct 2 2006, 04:29 AM
Thanks for the supportive words ladies.
Kittenb, you've really been through the mill. I've had so many pap smears and pelvic exams, and I still find them extremely unpleasant (And that's after having a baby, where, lord knows, EVERYONE has peered up there)
I'm sorry that you have other issues which make them even scarier.
Octinoxate, hi. Ugh. So you can't even go out for a long walk then? That usually helps me a bit if I feel down. I guess if your knees are buggered up though....
Pherber, I'm sorry about your friend. Sounds like you have a lot on your plate now too.
I've lurked in the Aspergers thread, just to try and gain some understanding of the condition. I always thought that having aspergers might inhibit 'normal' communication. Is that true? If so, does that make it hard to meet with doctors etc? (I hope that doesn't sound too intrusive/ignorant.)
For me, it's not meeting a doctor that's the problem. It's finding an english speaking one, and making an appointment that's difficult!
I've also seen several doctors, as I've moved a lot recently. They all have different ideas, some of them contradictory, so I feel I have to take control of my health care, and claim responsibilty for it.
I guess that's my way of healing myself.
Pherber, thanks for your suggestions. I have found a gynaecologist myself, but that's a good idea, to see if there's an advice bureau somewhere.
I prefer anonymous support, so have found a great on-line forum with women who have similar issues.
I find it tough here in Spain, as I have very few friends, and only one with whom I can discuss all this. I think if I was at home in the UK I'd be more social, to take my mind off it.
I have a wonderfully supportive husband, and a 2 year old daughter, so it's not like I'm entirely on my own.
Whew! That's enough from me for a bit.
Health and happiness to all of you.
Oct 2 2006, 09:19 AM
i don't really have any serious chronic medical problems, but my social anxiety prevents me from finding doctors for the aches and pains that bug me.
i just got new health insurance when i started my new job, so now i need to find a pcp and meet with her to get a referral for the psych nurse i've been seeing. i also i need a new gyno, a new therapist, a dermatologist (i've had these weird bumps on my back for months), and someone for my neck problems (my neck and shoulders actually make crunching noises when i move). how am i going to work up the nerve to call all of these people??
Oct 2 2006, 12:11 PM
laurenann - can you do it over the internet? Many sites have "Find a doctor" links. Would you be willing to have a friend make the calls for you?
pherber - I don't think that I need to be hospitalized, despite the history of trauma. My mental state is fine except for the state of stress that I am under. Don't worry, you didn't offend me. However, one of the things that I fight against is the fact that western medicine often deals with sexual assault victim/survivors in ways that pathologizes. "Oh you were raped, you must have PTSD." Not necessarily. PTSD can only be diagnosed (I think) about three months after the initial trauma. Otherwise, what a survivor is going through is healing. Trauma is there, but not always to the point of disorder. And this is something that I feel I have to explain to all of my doctors. I am not a fragile breakable child, I just need you (the doctors) to respect my fears and work with me on them.
Sigh. On a slightly self-pitying note, it just becomes one more thing that I have to deal with because of the actions of some child-raping asshat freak. It never ends, you know?
Oct 2 2006, 12:16 PM
Laurenann, do you have any good friends or family who could help you out, making these calls to set up appointments? Also, would it be helpful for you to ask someone to go with you to the appointment itself? That's completely appropriate.
Also, I'd like to put in a good word for nurse practitioners as primary care providers. I absolutely love my nurse practitioner and have heard similar feedback from others who see N.P.s. It just seems like they're more patient-centered. You might find them more approachable, 'cause hell, doctors can be tough to talk to even if you DON'T have anxiety issues already.
Margot, do you need any help with the language? If you'd like, I could give you a brief list of useful phrases and vocab for seeing a doctor, making an appointment, etc. (I speak Spanish.)
Oh, and, no, no long walks here. No short walks. No stationary bike, no swimming even. Nada. My knees are way too sensitive for it. It's a shame, b/c physical activity *is* such an awesome stress reliever, but now that I have more stress than ever I can't do any of it! I even have a hard time just stopping into the drugstore to pick up a couple items, or standing in a short line at the coffee shop. But I did get a wheelchair two days ago, so that should make some things easier. (And maybe make other things harder? I'm still not totally sure how I feel about being in a wheelchair. It's so new to me. Anyone have experience with it?)
Oct 2 2006, 12:19 PM
You're right about the communication bit, margot, and don't worry, people who ask questions are never ignorant! I deal with people who've seen Rainman
, and think they know all about autism... they are ignorant. *sigh*
I was lucky because recently I found a family doctor, actually they're two and they're such amazing ladies, who help me organize my stuff! They even call me at home, when I need to change the dosage of my meds, and they called the medical authorities, so I get more help with my everyday stuff.
A family doctor is often seen as someone who only treats the flu, but they're so important in keeping an eye on the whole picture.
When I feel comfortable in someones presence I don't really have a problem communicating.
My first boyfriend is british, and he moved to germany, and it took him a while to settle, but once he found some expats, he quickly began to feel less alienated/homesick.
Maybe there's some kind of advisory centre for immigrants?
Lauren, I don't know what pcp (apart from the drug) means, is that a GP/family doctor?
Because they shouldn't just refer you to a million different specialists, but check those things themselves first, because in most cases it's something minor.
I had those neck/shoulder problems, too, and the crunching noises really scared me! It's usually caused by the anxiety, which causes the muscles to tense, and then they make these scary sounds, so maybe it's all connected and you don't need so many specialists.
So I think you only need to find a good GP.
ETA: I looked in wikipedia, pcp is sort of a paramedic in canadian provinces? Sorry, if I get that wrong.
Hope my english wasn't too awkward today.
Edit again: octi! Wheelchair?!?
Oct 2 2006, 12:30 PM
Damn I didn't see your post kitten! (We're all posting simultaneously)
The PTSD was just meant to be an example, not all women on the ward had it, me neither. And I didn't assume you had it, since I can't judge from behind a computer. In the ward most just needed the few weeks as a time out to recover from the worst shock.
I hate the pathologizing, too, it's the same when it comes to grief/bereavement, it's not an illness, either.
Please consider/forgive me, that english isn't my mother language, and I sometimes exprss myself awkwardly, especially when it comes to such complex topics.
I also notice, that the medical care systems are so different in every country, it makes it hard to describe things.
I don't know if that just made sense.
Oct 2 2006, 12:41 PM
There's nothing wrong with labeling a set of symptoms PTSD if they fit the criteria. It's not pathologising to me, in the sense of you've failed somehow, etc. It's acknowledging that those symptoms--and what a person has been through to get them--not something people should have to deal with in their lives and they might--very understandably--need some extra help to get through it.
That's not to say people can't misuse/misunderstand PTSD, but that can happen with anything.
For some people it's very healing to have a label like PTSD--it can be a validation of the seriousness of what they are feeling and an acknowledgement that what they are feeling is real.
And yes, you are absolutely right, you cannot say everyone has PTSD just b/c they've had trauma.
There's also potentially a difference b/w people who've had repeated trauma, like sexual abuse/incest survivors, and people who've had trauma like a one off car accident. They may well react in different ways, and benefit from different kinds of support, treatment, whatever.
And yes, anyone who works with people in any kind of health care setting, espeically gynecological, has an ethical responsibility to educate themselves about the implications of sexual abuse histories on their working with clients/patients, and to act accordingly. (I"m saying this as a therapist who worked w/in the medical system in the UK.)
Not everyone does, sadly, but morally and ethically they should. And you are right to be upset about it being otherwise in cases where it is otherwise
Ok, I'm sorry if I'm rambling.
I have a much more minor complaint. I'm 8 months pregnant and feel accordingly uncomfortable. Now I have a cold on top of it. I've not worked since May (we've moved from the UK to the US) and the cold is really feeling like the final straw in me feeling helpless, bored, and frustrated.
I know something's wrong as I almost never, ever feel bored, left to my own devices.
Oct 2 2006, 12:49 PM
Moving to another continent while pregnant is not so minor, if you ask me!
You're so right about the gyne doctors. Of all people they
should know how widespread sexual abuse/rape is.
Oct 2 2006, 01:15 PM
Quick note: pherber, in the States a "PCP" is (in addition to the drug
) a "primary care provider". (some will say "primary care physician", but since mine is a nurse practitioner, I don't). So, basically it's the same as what you're referring to when you say "GP".
Oct 2 2006, 01:44 PM
pherber - I can't speak for everyone here, but your English translates just fine to me.
anoush - You're right. There is nothing wrong with a diagnoses of PTSD. Or finding diagnoses that help. A lot of what I am venting right now is my own anger (hence the name of this thread
Anyway, thanks everyone who is being a part of this conversation. I have my gyne appt. tomorrow and having you all support me really helps.
_octi - I am afraid that my only experience w/wheelchairs was in pushing one for several years for my cousin. I got real used to the "looks" that came from others. And I got real good at glaring right back. Let us know how it works out for you.
Oct 2 2006, 04:51 PM
I can totally understand your anger and frustration kittenb. I wasn't trying to say otherwise--hope that was clear. I think your venting is entirely appropriate!
I just get really frustrated with comments like "why do we have to label everything" re: mental health, and that seek to imply, for example, that depression shouldn;'t be called depression b/c its "a normal part of life."
(I don't think anyone said that here, but it was reminding me of that, or getting somewhere in that vicinity it seemed. So I rambled/vented/ranted a bit.)
That kind of attitude really pisses me off as I think it totally minimises the reality of conditions like PTSD, clinical depression, etc--how painful they are, how debilitating they can be, and so on.
And if you want to say it's "normal" b/c a lot of people have it--well, by that definition of "normal"--ie, common--then back pain is "normal"--most people have it eventually-- but no one says don't get diagnosed or treated if you have back pain, do they?
(well, some people might, but pretty rarely compared to mental health issues.)
I didn't know if this thread idea that was distinct enough a subject to keep a thread going (not that I thought it was a bad idea--just didn't quite "get" it.) I think now, seeing it in action, it was a really good idea to have space to just focus on the emotional aspects of illness--chronic, acute, whatever.
Oct 2 2006, 08:39 PM
I don't think anyone said we shoudn't label at all, we just need to be careful not to do it so fast. Grieving, or the break up of a relationship can make you feel so awful, and it's still not a mental illness, but a normal part of life.
Rape is a medical emergency, that needs tending, but doesn't have to mean it turns out to be PTSD.
To understand it, it's interesting to know, how PTSD was discovered. I learned in hospital, that the worlds greatest medical experts in that field come from Israel, and it was obviously discovered after the holocaust. They still have a very high number of people in instituions, because the constant fear of a bombs blowing up somewhere, or having survived or witnessed one of the countless suicide bombers, can trigger PTSD.
Ironically (or actually no, it's not ironic) the countries where PTSD is least recognized/studied are Germany and Japan. After the war in Vietnam, it turned out, that a lot of soldiers were traumatised afterwards, despite having been the perpetrators, to recognize PTSD though, you need to take a good look at yourself, so it's not surprising to see, where people live in complete denial.
Oct 3 2006, 11:12 AM
Actually PTSD as a formal diagnosis came out after the Vietnam war. Most of the interest in PTSD came after wars--in WWI it was called "Shell shock" for example.
There's no shame in PTSD or any mental health problem, though.
I"ve worked extensively with PTSD and I'm curious to know which Israeli experts you are talking about. I can't think of any--not that that means there aren't, of course. I just don't know who you mean.
Oct 3 2006, 11:38 AM
Like I said, it's only what I've been told in hospital.
Do you know what it was called after WW2?
Oct 3 2006, 11:33 PM
When it was as a result of war it was often "combat exaustion" or "combat neurosis." Sometimes it was called "battle fatigue."
Historically there are written accounts of what we would now call PTSD going back to the ancient Greeks, possibly further.
Much of the progress in recognition and discussion--both professionally and in the larger society--of the after effects of trauma has historically come after wars. I think this is because there are then a big group of people who very obviously suddenly have the problems, and they often are able to garner more attention.
And sadly, the trauma of sexual abuse historically hasn't been taken very seriously (and has often been downright denied).
Oct 4 2006, 05:39 AM
Pherber -your english is perfect!
That's good you've got a couple of decent doctors.
I had a fabulous doctor, who I had a good rapport with, and trusted. Unfortunately, I had to leave his practice when I moved in the UK.
I think, being in a foreign country, you lose a bit of your nerve, when it comes to complaining about poor treatment.
I'm quite bolshy, and wasn't afraid to request second opinions in the UK. Good job I did, in fact.
Over here, I just feel relieved to have found a gynae who speaks english. I a;lso Googled her, and she seems quite highly respected. She is a bit odd though, and asking questions about your treatment is actively discouraged. It's back to the 1950's style of 'Doctor is God'.
Octinoxate, a wheelchair? That sounds tough. Strangely enough, my husband and I were discussing a woman in a wheelchair earlier. We both agreed, that to us, it's not a defining characteristic. ie, I'd remember she had really nice hair, and a nice top first (Maybe I'm just exceptionally shallow?)
We reckoned another hard part is not being at eye-level with eveyone.
Thanks for the language offer. I am learning, and have so far managed to book appointments and understand clinics intructions, of which I'm quite proud!
Anoush, the last few weeks of pregnancy were the worst for me! I was SO uncomfortable. Good luck.
Prior to all this nonsense, I was so healthy. I just don't understand why I'm sort of not now. It makes me feel old and rubbish.
Oct 4 2006, 07:26 AM
Oh, thanks margot!
Have I mentioned, that I lived in London for a few years? Well, I didn't have any language problems (apart from the cockney rhyming
), but I can relate to the complaining/questioning thing.
If you do it at home it's no big deal, but if you do it abroad, people tend to think, you're critisizing their country and their health system.
That 'doctor is god' thing freaks me out. I feel so much better, *because* I could ask so many questions. It helped me realize, that I wasn't going to die after all.
Your remark about being shallow was so funny!
One of my uncles has Down Syndrome, and he's severely handicapped, recently he spoke his first sentence (he's in his late 40s) and a friend of my father has a daughter who has Down Syndrome, too. She's much more independent, though, and she's a great artist.
It occured to me, that growing up with handicapped people gave me a sense of normality, and I've never felt awkward in their presence.
Mental and physical handicaps are very different of course, but in the way people stare or patronize, it's probably the same.
Oct 4 2006, 11:27 PM
One more vote for pherber's kick-ass english. I never would have thought it was your second language.
Oh margot, I can totally relate to losing your nerve with doctors... and I don't even have to contend with the language issue. Every time I've gone to the doctor this year, I have cried like a baby. I just have to remind myself that I can still be my own advocate and take care of things even if I'm doing it through tears. But anyway, congrats on the great job you're doing navigating all that there!
I had my first outing in a wheelchair tonight (went to the mall to pick up a couple of things) and it was awesome! OMG, *so* much easier and more comfy than crutches. And no weird reactions from people in any way. No inconveniences with inaccessable stores, nada. I imagine this won't all hold true all the time. But for now at least, I [heart] my wheelchair! Hope that sentiment sticks... BTW, very interesting what you say about being in a wheelchair not seeming like a defining characteristic to you. I know it was for me when I first met a good friend of mine who's quadraplegic. I had to get to know him as a person for him to stop being the Guy In A Wheelchair. But I think since knowing him, maybe wheelchairs are no longer a defining characteristic to me either, and maybe that's why I don't seem to have any issues so far about being in one. I'm grateful for that. Actually, it's kind of like what you describe, pherber, when you say that growing up with handicapped people around you normalized that for you. (BTW- that's awesome about your uncle's first sentence!)
So, I went to the doctor again today and he's "stumped" about my condition, why my knees are still so bad. I got bloodwork done to explore the possibility of rheumatoid diseases. I'm also wondering if all this could be maybe due to me having a build-up of toxic emotion in my body. I had a really shitty, shitty summer for several reasons (some of which are still going on) and I wonder if that's preventing me from getting better. I wonder if I need to embark on a serious emotional/spiritual healing mission. Not that I've been ignoring those things until now. But maybe I need to devote big-time energy to it. Anyone have any thoughts/experience on that aspect of things? We've talked a little about the relation between sickness and emotion, but what about the relation between HEALING and emotion?
kitten, how was your appointment??
Oct 5 2006, 02:15 AM
That's so nice, thank you octi! *blushes*
I think the wheelchair is a great chance to heal, because it puts the strain from your legs, giving them a break. (
Oh dear.. No pun intended!
It's no surprise you can't recover, because apart from your private issues, walking with uncomfortable crutches just added to the stress.
It's great people were so cool, I'm very happy for you!
My uncle is so wonderful, I love him dearly, he's got such a great sense of humour.
Since he can only say single words, he has to communicate through his body language, facial expressions etc.
I actually learned a lot from him, because autistics have not only trouble reading body language, they often can't communicate through bodylanguage, either, giving no or wrong clues, to how they feel. So I had a lot of practise, communicating with him non verbally.
It makes me sad, that down syndrome can be detected in the early stages of pregnancy.
I'm definetely pro choice, but in 95% of the cases children with down syndrome don't get born anymore. I wish the parents knew how wonderful people with down syndrome are.
It's a big issue in the autism community, because they're developing prenatal tests, to detect autism in children.
That means we're probably going to die out.
Oct 5 2006, 06:44 AM
Pherber (a bit off topic, sorry)
That's very true, what you say about Downs Syndrome testing. We were in a dillemma, as when I was 18 weeks pregnant with my daughter, a routine ante natal test came back putting us in the 'high' probability of a baby with D. S.
We decided we would do as best we could, and refused further testing, as at 18 weeks, I wanted that baby, no matter what!
We were incredibly relieved that our daughter did not have Downs Syndrome. (the midwife, however immediately noted her 'unusual, slanted eyes' and whisked her away from me to check)
I was so convinced, throughout the pregnancy, that she was, and was so scared how we would cope.
When she was born, I honestly would have loved her as much if she was.
We refused any screening tests though, when I bacame pregnant again. I couldn't face the ethical dillemma again.
I also know so many other women who had perfect babies, yet were given bad news in screening tests. The diagnostic test also carries a risk of miscarriage.
My husband used to care for many adults with D.S. He said, there is such a spectrum of ability, as you said.
The thought of a child with severe health problems is what scares me.
Sorry to derail!
Oct 5 2006, 09:36 AM
Hey all. Margot, I am sorry that I am not clear on this but are you pregnant now?
My appointment went much as I expected it would. Not the greatest news, but not bad either. I like this gyne & I am glad that I was referred to her. The only downside is that she seems to be of the "tell them all the bad stuff first school" of medicine. So she comes in and says "If you had had a few children by now, we would be considering a hysterectomy." And that was the cue for me to start crying. It was hard to understand what she was saying after that because I was so scared she was going to tell me something about how this would affect my chances of having a child, which she was, but by the end I understood what her plan was. I have an MRI next week (bless the doc she requested both Open MRI and perscribed me an anti-anxiety pill) and then we are going to talk surgery to remove the damn thing. It seems that the fibroid is in my uterus, not on the outside as I was thinking, and everything is just too big. This will not damage my chances of having children, although it might affect delivery options. We will see.
I seem to be having a "symptom day" as I am calling it. I have been to the bathroom 3 times in one hour and I am on the 8th day of my period. That's new.
This visit was hard because it also drove home my fear of never finding anyone. I feel so disinterested in guys right now. I can't even imagine what it would feel like to find someone interesting. And here is my doctor asking if there is any chance that I am thinking about getting pregnant soon. I can't even find someone worth dating at the moment. I cried a lot on Tuesday, but I was much more stable on Wednesday.
Anyway, I am also doing things to bring back my creative drive. I have a short story in the works. Nothing brilliant, I just like the pen on the paper. I am planning a ritual for Halloween, something to give myself time to mourn a little and welcome the changes I am experiencing. Creativity is my driving need right now.
Oct 5 2006, 11:28 AM
No, not pregnant now.
Kittenb, they always seem to mention hysterectomies, I think because so many women have them, so maybe it's no biggie to a doc.
I just wanted to let you know that many of my 'mum' friends have/had fibroids. They're actually really common after having a kid.
I know it's scary and horrible, but I'm sure it won't affect you having kids in the future.
I'm sorry you feel sad.
Cosy up and feel sorry for yourself, you're allowed to, you know.
Group hug, everyone!
Oct 5 2006, 11:57 PM
kitten, you said you were thinking about doing a mourning ritual around halloween... I'm wondering if you know about "dia de los muertos", day of the dead. It's a Mexican tradition that happens the day after Halloween, and it expresses a totally different approach to darkness and death than the one that I'm used to seeing. You might want to check it out-- who knows, something about it might speak to you.
Also, kitten, I'm so glad you have a cool gyno and that you're close to getting the damn fibroid taken out. That must be a relief.
I'm feeling a little bit freaked out tonight, b/c my elbow and shoulder are hurting, and they are super important to me right now. If I have more joint problems now on the upper body, or if I tear a rotator cuff using this wheelchair, I am F-U-C-K-E-D. I seriously don't know what I would do. Be housebound, I think.
In brighter news, wheelchair outing #2 went equally well. I'm grateful to live in such a flat city. I had no idea how lucky I was.
I don't know how to feel about my upcoming doctor visit, when I'll get my bloodwork back. Do I hope to have a rheumatoid condition, even though that's bad news, just to have a definitive answer? Do I hope not to have one and keep being in the dark (and wondering if it could be something even worse?) . I guess neither. I guess I go into it without certain hopes or expectations. What is it they say? "If it has a solution, why bother worrying about it? And if it doesn't have a solution, why bother worrying about it?"
Oct 6 2006, 04:57 AM
margot, when I wrote about the DS, I was worried, that some here might have had prenatal tests, and would be offended. I'm relieved, nobody took that as a critisism.
Of course nobody wants a baby, with a severe illness, that will only suffer when it's born, that's why I try to point out, that DS doesn't mean unbearable suffering, even if the people with it don't have a very long life expectancy.
kitten, your doctor sounds so insensitive.
I wonder if doctors feed anxiety pills, because health insurances won't pay for the time consuming comforting of nervous patients.
My sister had a surgeon, who was the most insensitive ass, but she put up with it, because he is a renowned expert in his field, and that was her priority.... but it's such a shitty situation.
octi, do you have an electrical wheelchair or do you have to push it yourself? I don't know what a rotator cuff is, maybe that indicates what kind of wheelchair it is.
Sorry to have used so many silly smileys in this post!
Hugs to all and good luck!
Oct 6 2006, 02:23 PM
pherber, I have the kind of wheelchair that you push yourself (a "manual wheelchair"). A rotator cuff is a small but important muscle in your shoulder, that a lot of people tear doing different activities. Apparently it's the most common injury to people who are new wheelchair use. If you do tear your rotator cuff, it's bad news, because you can't move your arm much without pain, much less use it to support your weight, etc.
Oh and pherber, you're so right: it's such a shitty situation to have to choose between a mediocre doctor who cares about you, or a great doctor who is an insensitive ass! I may find myself doctor shopping again soon and I hope I don't have to make that choice...
Oct 6 2006, 02:57 PM
oh, that sucks, having to push that thing, having an aching shoulder! (((octi)))
Let's hope it's just aching because of the new wheelchair pushing movement, that your body has to get used to and not rheumatoid.
(I thought rotary cuff is a part of the wheelchair. Duh...)
Oct 6 2006, 05:35 PM
I'm pregnant and I'm 40 years old, so my risk of having a child with DS is pretty high compared to younger women.
I had the tests. I understand completely what people are saying, but I felt I needed the tests. It took a lot of hard thinking on our part, but I feel we made the right decision. We are both pretty sure we would have terminated if an amnio showed DS. (I had a screening test, which only gives you odds, and an anmio will tell you for sure. However, an amnio has a possibility of 1% chance of miscarriage, and we didn't want that, and were happy to live with the reasonably good odds.)
I think it's easy to say catagorically one thing or another, but for us, we thought about what we were able to cope with--and the fact that I'm 40 and my partner is 50 was a factor as well--and we decided accordingly.
I don't think we deserve to be condemned for it, either. No, I don't feel anyone here was going that, and I think those comments made here were perfectly reasonable. Yes, kids/people with all kinds of disabilities have all kinds of value in their lives and the lives of others. I also know what I can cope with, and if I have a choice, for sake of both my own mental health and my potential child, I choose not to be in that situation.
Oct 8 2006, 07:03 AM
For thoes of you who haven't tried it, this is a great chance to break in your "Ignore" function. You can find it under the "My Controls" key.
Anyway, I just wanted to say that my doctor is really cool. Yes, she is blunt and honest about what is going on, but I need that. I don't like candy-coating. She was very understanding about my "survivor issues" and has a great reputation in my city's medical community. I feel lucky to have been assigned to her. When I am planning on having children, she will be a great ob. The only reason she prescribed me an anti-anxiety pill is so I can take it for my MRI. I am claustraphobic and the idea of being in one of thoes tubes just makes my chest tight. She told me that she had the same reaction in MRI tubes. And as for me crying, well I have been doing that a lot lately. She was very understanding.
octi - if you are not having an active rhematoid inflammation, massage might be really helpful as your body adjusts to the chair. If you are diagnosed with RA, you can get massage as long as you are not having an active attack (fever always contraindicates massage.) For me, it always helps to have a diagnoses. Mostly b/c I am a complete control freak and I like to research everything. I really hope you get the answers you want. And soon.
I just have to add, because I am ready to scream about this, I think both my yeast infection and my cat's bladder infection have returned. Because the combination just makes everything perfect!
And it so irritating b/c I had planned to take some of my work flex-time this week and get a massage and I can't get a massage if I have an yeast infection! Dammit.
Oct 8 2006, 09:30 AM
Yes, I love the ignore function. Really, really love it.
Did someone say something? No, I didn't think so.
Kittenb, glad to hear you like your doctor so much. It's amazing how much difference the medical provider can make in how you cope with medical isssues, isn't it?
I've never had an MRI, but I doubt I'd get through one w/o a sedative of some sort.
Oct 8 2006, 06:11 PM
I just looked up MRI (all those medical terms...)I understand now, why you got that pill, kitten.
I second every word you said, anoush.
Oct 9 2006, 08:24 AM
pherber - yep, she gave me the pill b/c of pure and simple fear on my part. Now, I have never taken an anti-anxiety med before so I have no idea how loopy it might make me but a friend is driving me in. She also requested an Open MRI which I guess means a little more space. Thank goodness.
Oct 9 2006, 10:06 AM
Kitten, thanks for the suggestion about massage. Man, I'm more than happy to use any justification to go get one! So wonderfully relaxing. With my best friend and my (now) ex both gone from my life in different ways (one geographically, one more completely) I've been really craving touch... I haven't been getting nearly as much of it lately. So, to determine if I'm having a flare or if it's safe to massage, do I just take my temp?
That sucks about having a yeast infection! I'm sure the last thing you want/need is one more constant irritation. (And no massage
Why can't you get one with a yeastie?) It sounds like the proverbial camel's back hasn't been broken yet, though, right?
Pherber, it makes perfect sense for a "rotator cuff" to be part of a wheel chair, 'cause it sounds like "rotate". Not a dumb assumption at all. It's tough to navigate medical terms in a foreign language... I worked as a translator at a hospital in Peru once and only then realized that I had these huge gaps in my vocabulary... kidney stone? bladder? lipoma? benign tumor? What???