Oct 9 2006, 10:29 AM
that's funny, I post mostly in this and in the art busties thread, so here it's all the medical terms and there it's all the technical terms (photo equipment, etc..) so it's a constant
(yes, I thought "rotate" wheel!)
And you just provided me with a great excuse, for my silly smiley overload...
um, with the massage, shouldn't the physiotherapist know, when it's ok to have one?
Oct 9 2006, 12:20 PM
You can't get massage when you have an infection of most sorts. Sometimes it is only a local contraindication
, but sometimes the caution is systemic
. Here is a really good link that explains When Not To Massage.
An RA flare falls under both fever and inflammation. The problem stems from the fact that massage will stimulate your circulation. This can and will make any infection spread. You never want to get a massage when you are developing flu-like symptoms or if you have a fever from anything.
Yeast infections are a little vaguer but since it definetly means I am immune compromised, I have not decided for sure what I can do. However, I am taking some meds, yogurt is helping and I am taking acidopholus pills. I feel better today than I did yesterday, that's for sure.
Have I mentioned that I am a part-time massage therapist?
By the way, in a short time, this thread has come to mean a lot to me. Thanks, everyone!
Oct 9 2006, 01:27 PM
Thanks! "massage for dummies!"
Oct 9 2006, 02:52 PM
Wow, good to know.
Kitten, I'm glad that you're finding this thread helpful. I am, too. I'm glad it's here.
The last couple of days, I'v been struggling with this impression I have that I put more energy into caring for other people than other people put into caring for me. I've felt this way a couple of times before, but it's mostly been ok because I wasn't generally in a situation where I needed tons of caring myself. But right now, I feel like I'm in a really vulnerable place and need more help than I'm getting. I was really frustrated about it yesterday (right after a meeting of the grief support group I host at my home) and had this urge to just shut myself away and be selfish with my energy... "If people aren't going to take care of me, I'm not going to take care of them! I'll just focus on me!" And that scares me, because I know it's not all that healthy, and because I used to be waaaay too independent/self-sufficient and I'm glad I learned how to rely on people. So I suppose I need to directly ask people for what I need (?). I do think that they would like to be supportive and probably don't know what precisely to do until asked. Or... I don't know, is it so bad to reserve my energies for myself?
(Kitten, I wonder if you've ever had to deal with this, having a part-time profession that entails caring for lots of other people...)
Oct 11 2006, 12:57 PM
Yeah, great thread! It was kittens idea to start this thread in the first place, so thanks to you kitten!
Octi, I know your post was more directed at kitten, but I hope it's ok, if I add something.
Well, I'm not in a caring profession, I've just needed help for many years now, which made me feel a litttle guilty sometimes, because I can never give something in return.
I've been thinking about doing some voluntary work in a soup kitchen, or something like that. Having been homeless myself years ago, I would love to help homeless people.
This situation is obviously the complete opposite to yours.
I think you need to be selfish sometimes, and if you need help, you need help.
Who's on the receiving or giving end, has just to do with peoples recources, like I wouldn't be much help for anyone, if I just helped out of guilt, so I'll wait until things have settled a little before I'll consider that. (And- we help each other in our AS group)
As someone who just can't read social cues, I'd definetely say, it's a good thing, to tell people directly what you need.
Neurotypicals might be able to tell, if someone needs help, but most people just don't know what to do.
my, I've been using the word "help" so often, it's almost satirical...)
I hope I wasn't stating the obvious too much, either.
I also have a some great progress, to report:
After so many weeks on meds, my thyroid hormone levels went back to normal for the first time, and we can slowly reduce the dosis now.
It's such a great feeling, to not hear my own hyperactive pulse throbbing in my chest, even when resting.
For the first time in two months I feel like I'm not on crack, being wide awake for 48 hours, or being so tired, but too scared to sleep, for fear of dying...
It also turned out, that I don't have graves disease, so I don't need to worry about my eyes.
I've also met my new custodian/caretaker, she's kind of a mixture of both, because we have a law, that states, she can do things in my name, but not without my permission.
Well, she is so unbelievably fabulous, kind and competent! I'm so relieved I could cry!
And finally, I've discovered my secret weapon (don't laugh):
Being so hopeless with communicating, I resorted to a lot of e-mailing.
This obvious idea came, after I posted in the "write a letter, one you'll never send" thread.
I realized, being so much better in writing than speaking, I should actually send that letter (and many more).
The great thing is, I got replies, people took me seriously, apologized, helped... etc, something that never happens, when I speak to them directly.
That so mucho boosted my confidence, it even increased my social skills in other fields.
Hugs to everyone here!
Oct 11 2006, 06:56 PM
QUOTE(_octinoxate @ Oct 9 2006, 09:09 PM)
I do think that they would like to be supportive and probably don't know what precisely to do until asked. Or... I don't know, is it so bad to reserve my energies for myself?
Short answer for now--no, it most certainly is not bad. It can be a very important thing to listen to in yourself.
I'm not working at the moment due to the move, but I'm a social worker/therapist, and I know that if i don't pay attention to similar feelings in myself it can be very bad news. My feeling is that's true in most any helping profession (and many others, as well, not to mention life!)
I understand your other concerns, and I think you are wise to be thinking about those other components as well, but women in particular often have such a hard time taking their own needs seriously and giving them as much weight at they do the needs of others.
Wish I could be more eloquent. (See pregnancy thread or kvetch for details of my dental agonies if so desired). But even though I'm FAR from top form, I really wanted to say firmly that no, it is not so bad to reserve your energies for yourself sometimes. Everyone has times they need to do that, and learning when is important and valuable.
Oct 12 2006, 12:36 AM
Pherber, I'm so happy to hear the good news! Yay!!
As far as communication skills go: I definitely agree that you have great written communication skills, and I would not have guessed from talking to you here that you have issues with social interaction. And man, especially since this is your second language-!! Impressive. Anyway, I'm so glad that email is working out for you! And it seems like that's a great way to solve things, because I feel like email is only going to become more and more common and important in the future.
Thanks for the input on my question/problem, pherber and anoush. I have more to say about your responses, but it's beddy-bed time for me right now. (I just wanted to post now to at least say congrats to pherber!)
Oct 12 2006, 01:48 AM
Yeah, Pherber, your posts here are really eloquent and funny. That's great that you have e-mailed a load of people. And superb news about your thyroid.
I don't like long meaningful conversations with my friends, unless we're REALLY close, so sometimes I don't know if they're having a hard time.
I say this, because I really think it's important to spell stuff out to friends. If you need time out to concentrate on yourself, I think it's fine to say so. If someone is worth having as a friend, they'll understand.
Also, I think (most) people love to help out, if you're incapacitated. I was very sick, and caring for my daughter alone a lot, last year. Out of neccessity, I had to drop my pride, and ask for help. I was amazed how helpful a couple of my friends were. I didn't know them well at all, but they were real lifesavers!
I agree with Anoush, women do get caught up in doing as much as they can for other commitments, and neglecting themselves.
I like to think of it as a kind of bank. Sometimes you put help and care in, sometimes you just need to take it out. Ugh! -Did that sound a bit 'Hallmark'?
On a plus side, I had a biopsy result come back completely clear! -Another test not so clear, but lets concentrate on the good stuff, right?
How's the writing, kittenb?
Oct 12 2006, 09:30 AM
Just a flyby before I go to the gym.
Yay! Pherber! I am glad things are getting better for you.
The writing and other radom creativity is really helping. Thanks!
Oct 13 2006, 01:19 AM
Margot, great to hear about your biopsy results! Also: I don't think the bank metaphor is so very Hallmark, and I think it's pretty apt. Another I like is "you're either on the stretcher or you're carrying it."
Good news of my own:
1. All my blood tests came back normal--even the one that was abnormal previously-- so it looks like I don't have any scary autoimmune disease. The knees are still bad and need some serious work, but at least it's gonna be curable if all goes as planned.
2. Saw the dermatologist nurse practitioner today and she thinks that while it might be a good idea to get a biopsy of one or two of my moles, it's nothing precancerous at least for now, so I can just watch them and come back in 3 months.
Now I'm just keeping my fingers crossed about my biopsy results coming up on Wednesday...
Oct 14 2006, 02:41 AM
Awww! Thanks all!!!!
and octi, no autoimmune disease!
margot, good biopsy result!!
I'm so happy for you!
*opens a bottle of champagne*
Oct 14 2006, 08:00 AM
((pherber and all busties feeling badly))
I have chronic migraines with severe pain (redundant i know), and after a particularly terrible two weeks, I've decided that I need to take some time off from grad school to take charge of my physical (and mental at this point) health...everyone from my advisors, to the director, to my mom tells me to stick it out, you can do it etc, so I've agreed to pick it up again on Monday...they aren't being unreasonable or mean...but I'm anxious and frustrated that I am miserable, scared, and just plain worn out...Everyone is trying to be understanding and accomodating by giving me more leeway, allowances etc...my problem is that I don't want allowances...I want to take time to get myself straight and then come back at 100 percent...people seem to think I'm weird/dramatic for wanting to take a semester off, I'm the queen of stoicism, but the pain was so bad I tried to write up a will this past week, because I thought I'd have a stroke...can I get a second opinion, busties?
x posted under depression thread
Oct 14 2006, 10:36 AM
I believe in trusting yourself. You know what you need, how you work, how you feel, what's most important to you and for you. Go with that, listen to your body and emotions tell you what you need.
I don't think it's weird or dramatic at all to take time off for this. Chronic pain (and chronic mental stress) changes everything. Also, I personally try not to do things when my heart isn't in it. Of course that's not always possible, sometimes we just have to suck it up and do it, but if you have the ability to take time off without screwing yourself over in the future, that's a great opportunity.
Oct 14 2006, 10:48 AM
People who judge situations, they haven't been in, are weird and dramatic, IMHO.
Welcome to the thread with added healing power mamiwater!
Oct 15 2006, 10:26 AM
Just a quick flyby, mamiwater, but ditto what they said! It's your body, you know what it needs.
Oct 23 2006, 11:48 AM
hi all, i haven't been around for a while (cause i was getting fed up with certain people on certain threads and needed a break), anyway this thread has since turned up and is so on topic! i am so fed up right now with my stomach and really my entire body. it just feels like i never feel good. i have ibs and food allergies and some other random problems, and i used to be okay for a couple months then bad for a couple weeks on and off, but i've just been feeling horrible for about three months straight. i want to cry and quit my job and curl into a ball.
i have my first appointment with a GI specialist at the end of November (how is it i've never seen one before, i've been sick since i was 7!), so maybe that will help somehow. i dunno. i'm thinking about trying to find a naturopath.
wah. someone make me feel better!
Oct 23 2006, 02:09 PM
Hey midge. I am glad that you came back and that this thread might help. Chachaheels might have some actual answers for you, where as I come bearing only sympathy. You have probably tried everything, but if not, consider that you might have a wheat allergy. They seem to pop up with the weirdest symptoms. Does anything make it better? Hot packs? Hot tea? No caffenine? Anything?
I cannot belive that you have to wait that long for you appointment. What is it with doctors that they are always so booked up? Good luck and please let us know what the doc says.
As for me, I am meeting with my gyne this Wednesday to finally get some clarity on what my next step will be. Fingers crossed!
Oct 23 2006, 02:25 PM
kitten- yeah, i actually disagree with a lot of what said bustie has to say about approaches to health... so sympathy is great! ;-)
of course, i have tried everything... i've been off wheat/gluten for almost a year now. as well as a million other things. hot packs are great, but not while i'm at work, cause i'm on my feet most of the time!
i've already been waiting for the GI appointment 2 months! they decided i wasn't critical enough or something. blah.
oh well, i have to drag myself off to work now, yipee...will chat more later.
Oct 23 2006, 03:43 PM
wow, that went well.
i went to work, discovered i'd left all my food at home, and fifteen mins. later, decided it just wasn't my day and went home.
now i'm at home feeling sorry for myself and trying to figure out what to do.
today officially sucks.
Oct 23 2006, 04:19 PM
Some days are just not meant to be. Maybe you could consider it a mental-health day?
Oct 25 2006, 12:27 PM
Not a great day. I am glad that I have a doctor that I like and trust. I cannot even imagine what I would be doing right now if I did not like her.
Yep, saw the gyne again. She has all the results of my MRI and it was nothing that I did not expect, except...
I started reading about the surgery. There are two types of incisions that can be made to remove a fibroid. One goes right above my pubic bone and is small. The other goes from the middle of my abdomen to my pelvic area. That is much bigger. It just seems that having a weak spot there...is just seems dangerous. What about when I have kids? Would scar tissue be able to stretch for a baby? My doctor prefers the small incision over my pubic bone. However, my fibroid may be too large for that. To shrink the fibroid, I am going to take a shot of something that will make it smaller.
And it will give me all of the symptoms of menopause. It will not cause menopause, but while I am on it, I will be subject to night sweats, hot flashes, all of it. The symptoms should abate once I am off the medicine.
Did I mention that I will miss 3-4 weeks of work and 2 months of gym time? I feel like I am worrying about all of the wrong things, like the fact that two months of sedentary behavior will turn me into a cow and I will loose all of the muscle developement that I have worked so hard for over the past year. And in the back of my mind lies the fear that something will go wrong and I will loose my uterus. It is a very VERY small risk but it scares me silly.
I am so glad that I don't have to have the surgery until January. I can put off worrying until then, or just keep doing research and I will be calmer just because of the knowledge.
Oct 26 2006, 05:08 PM
Oh, kitten, that sounds scary! I don't have any comfort to offer about the medical unknowns (eg, would this affect future pregnancy, etc.) since I don't have much science background. I don't think scar tissue itself stretches, but the rest of your skin has great ability to stretch so I would imagine it could compensate.
Is there anything you can take/do (say, herbs, or certain foods?) to help mitigate the menopause-y symptoms? That is, I know that women who are actually going through menopause can take things to help... would those also apply to you?
I don't think you're worrying about the "wrong" things. You worry about what you worry about and there's not much you can do about it-- and the last thing you need is to add another problem to the situation by judging yourself, you know?... I don't think it's shallow to be concerned about 2 months of being sedentary. I also think we worry about certain issues (say, gaining weight) because they're proxies for a lot of other concerns/fears we have.
As far as being sedentary goes, I can only add this: I have been sedentary for going on six months because of my health issues. And yeah, I've gained some weight. But in a way it's been a gift, b/c it's made me get ok with the idea of being fat (not that I'm necessarily "fat", but regardless, it was a fear to deal with) and finally put a stop to my borderline eating disorder tendencies and made me examine some body issues. Don't get me wrong, it still does fucking suck to lose muscles and fitness that you worked really hard for. Ohhh, yes, it does. But all I'm saying is that with the right attitude it becomes a chance for self-exploration instead of just a chance to get a little chubby. ...and also, man, two month is nothing. If you can get back to almost full activity level after two months, you'll be fine. And in the meantime, you can probably do other things... for instance, would you be able to do light weight-lifting?
(((((kitten))))) Good luck with all this.
Nov 5 2006, 12:50 PM
wow, kitten, that is a little overwhelming. but like octinoxate said, it's just something you will have to do and there's no point in adding more stress to the situation.
plus, i'm sure there are some kinds of exercises you will be able to do, but you might just have to get some pointers from a physiotherapist or something on how to adapt your workout. for example, you might have to do a lot of your strength training lying down... don't give up though, ask lots of questions, and maybe there are things that you can do to make this easier and less disruptive...
best of luck and hugs!
Nov 5 2006, 01:21 PM
I don't think you're worrying about the "wrong" things either, KittenB. There are no "wrong" things--this is a big deal--a surgery, a hormone treatment with very real repercussions, and consequences to the whole procedure that deserve attention. If you're worried, don't ignore your thoughts but follow them through. Ask questions, find out what other options for treatment exist (including alternative medical treatments) and see where your inquiries lead. If you feel that, after your questions have been answered, things will go well, then you've expended a little effort and you are secure in the steps you'll take. If you feel that the answers to your questions don't address your concerns adequately, then you will also know what to do. Either way, you are making a decision which results from being fully informed first. This will mean you make a decision and your mind will be at ease no matter what it is.
As for being active, I think Octi is better equipped to know how to keep fit despite the challenges you'll be presented with.
I know it can be really difficult and troubling...I'm sorry it's so taxing right now, but trust your instincts and follow through on them. It will work out.
Nov 5 2006, 04:32 PM
Like chacha said, I might be able to give you some pointers on staying (relatively) fit despite physical limitations. If you tell us a bit more about the specific things that you won't and will be able to do, I'll happily offer suggestions based on that (to the extent I can).
Nov 6 2006, 08:32 PM
Busties, I need some encouragement.
I'm feeling really upset about my--what? injury? disability? body? I don't even know what word to use. Lately I've been really on and off about starting to see myself as disabled. Until lately (and esp. once I found out my blood tests were ok so this is theoretically curable) I had just been thinking of this shit with my knees as an injury. But now... goddammit, it's been six months, and I'm not getting any better. And I'm feeling really discouraged that I'm going to get better. And I'm wondering if maybe I should just start accepting the idea that I'm disabled and let go of all the stuff I used to do, be, and love that no longer are possible. Let go of the idea of being in shape (or even, it feels, attractive). Let go of the idea of dancing ever again. Hiking. Going out for a walk with a friend, or alone to calm myself down. Travelling in third world countries (which has been my plan for the coming summer/fall for the past year). Visiting friends who live in second-story apartments. Being able to stay on my feet long enough to sweep my own fucking floor, or to stand and talk to a friend that I run into in a store, hallway, etc.
I've been feeling really dumpy and unattractive lately (b/c of the weight I've gained and muscle I've lost in the past half year). My clothes don't fit anymore. It keeps occurring to me to put the brakes on this somewhat new sexual relationship I've got going here even though we've got good chemistry (and I've certainly got a hearty sex drive) because I don't feel like I want to be naked with anybody. And then, I feel lame for that, and I feel like I don't want to even express these thoughts (insecurities) to the guy because, well, I find that to be such an unattractive trait. (I guess I need to take my own advice, below, about how judging ourselves for our reactions to things just creates more problems...)
Oh yeah, and I'm in pain. Still. Fucking six months of pain.
I need some serious encouragement here.
Nov 7 2006, 04:00 AM
Don't give up! And please reconsider putting the brakes on the sexual relationship, especially since your drive is really good and even though you might not feel attractive, you're clearly attractive to your partner!
I know it sucks to be in pain, and feel like things aren't changing. It must be so frustrating. But all those things you used to do--it would be so wrong to just give up, as you're a pretty determined and powerful person.
Nov 7 2006, 06:38 PM
I'm feeling even more discouraged today, because I just came home from the physical therapist who was... well, not exactly 100% optimistic about my situation. She told me that we're not trying to cure this, just to manage it (ok, fine); that my muscles don't seem to be firing right and are in fact doing worse than they were the last time I saw her; that physical therapy is hit or miss, helping some people/injuries and not others; and that if I don't improve significantly in 4-6 weeks of therapy then I have to see the surgeon (again). Well, I've tried physical therapy twice already, for 4-6 weeks, without progress. And I've seen the surgeon already, too (for that reason), and he told me that there wasn't anything he thought was appropriate/helpful to do to my knees. And my doc (and others) have told me that surgery itself is very hit or miss and sometimes doesn't help things at all. So where the fuck does that leave me? I guess the same place I was yesterday... on the verge of giving up. Only now with permission to give up from my health care providers.
Nov 8 2006, 04:29 AM
Okay, I see the whole "push" to just manage this...and actually, I'm glad the surgery aspect is being presented to you with all its attendant downsides (I think here, patients really deserve the honest truth about possibilities and pitfalls). But I think your own reticence to just accept this is a good sign that you shouldn't. Your instincts seem to say you can fix this and you want to fix this and be active again; plus you're young and very strong. I would trust that before I just "settled" in for a future of "managing" this.
So: who else can be consulted for options? A chiropractor? A Cranio-sacral therapist?
Your acupuncturist? A Sports Medicine specialist? (I'm guessing you've already tried these guys out).
When they say "your muscles don't seem to be 'firing' as they did before, are they ruling out things like nerve damage, or chronic disease like MD?
Just as an aside, I'm really curious--a few weeks ago, I suggested a dose of Ruta Grav.--were you ever able to find this, and was there any response from taking it?
Nov 8 2006, 09:34 PM
_octinoxate - I am trying to send you as much support as I can over the internet. It is obvious to me that you are not ready to give in to this problem and that is great. I don't know the full deal of what is happening to you, but if you want to fight, fight. We are here with you. I like chacha's suggestion of cranial-sacral work. They can do some crazy stuff.
I hear you on the desire/sex issues. I have rarely been less interested in being with someone b/c I just feel weird, but I still want to. I hope this isn't the wrong thread to go here, but...after my damn yeast infection went away, masterbation was like a gift to myself. It felt very healing. I have, however, noticed a decrease in my interest in even having sex with myself. Sleep just seems more appealing. So I am trying to go with my body's rythm. Good luck on what you decide to do.
Thanks for all the support everyone. I will be having my injection on Tuesday. Fingers crossed!
Nov 8 2006, 10:33 PM
Thanks, chacha and kitten. Seriously, I appreciate the support.
Yesterday I made the poor decision of talking to my mother about this problem, and now she's doing the mom thing: insisting on flying out here to "take care of me"; calling a doc (family friend) that I've been talking to about this even though I asked her nicely to stay out of our communication; telling me what to do/ judging my decisions; trying to make doctor appointments for me in her city when I'll be there at Christmas; and so on. It's so hard because on the one hand I truly appreciate her concern and I also realize that she's interfering like this because she's scared and protective... and on the other hand, I'm fucking pissed! I repeatedly ask her not to do things, and she completely ignores my wishes. And in doing all this baby-ing, she just makes things worse: after all, one of the worst things about the idea of potentially having a disability is the loss of independence and power/control that that entails. And I try to explain these things to her nicely and she just.doesn't.get.it. I'm soooo not looking forward to going out there at Christmas now, because in addition to the usual tensions in our relationship, the entire time she's going to be treating me like a complete child. (Gosh, why can't my ma be more like a bustie?
Chacha, my physical therapist explains the "muscles not 'firing' right" as an effect of the swelling and irritation I've got going on there... no mention of it being nerve damage. Maybe it's worth asking her though... it hadn't even occurred to me. It's also probably worth asking her if I'm at risk for any long-term damage because of this injury but frankly, I couldn't handle hearing it if that's the case, so I'm just going to keep my mouth shut at this point.
Re: who else can be consulted: I don't know. My acupuncturist felt like she had done all she could for me when we stopped treatment a month or two ago. And she didn't have any ideas about other sorts of practitioners who could be helpful when I asked her about that (seemed to think it would be a waste of money). I've already seen 3 different sports medicine docs, two PTs, and a surgeon. I'm probably going to see that doc who's a family friend (he's a general practitioner but says he's treated millions of knee injuries). What do you think? It seems like there's some consensus on the cranial-sacral route. Anyone have suggestions about what to ask a practitioner of that, to see if (s)he/ it is right for me?
Chacha, I did not try the Ruta Grav. To tell you the truth, I'm hesitant about doing it because the homeopathic route is so unfamiliar to me, and I'm imagining this sort of worst-case-scenario situation where I take it, it gives me problems, and then I have to explain : "Someone I talked to on the internet told me to do it, so I did!" You know? I wonder if maybe I should try to find a homeopath here that could more closely supervise me, etc. Do you think homeopathy is a good route to go with something like this, that's basically mechanical?
Kitten, that's not TMI in any way. It makes sense to me that treating yourself right sexually felt really helpful... makes sense not only at an abstract level but also at a concrete physiological level (more good neurotransmitters released, etc.). Man, I've been super sleepy lately as well. Even though I got a full 8 hours last night, I took a two hour nap this afternoon. I'm trying to figure out if it's because my body wants more rest to heal, or if I'm actually mildly depressed at this point. (Incidentally, I finally talked at length to my "partner" or whatever he is about the struggles I'm having with this knee stuff, and his main suggestion was that I get counseling b/c it seems to him to be psychosomatic. And man, that's such a tricky topic, because there's a fine line between recognizing the interconnectedness of mind and body and telling somebody that they're imagining things or insinuating that they're crazy. You know? I didn't know quite how to take it coming from him. Though regardless, it's probably not a bad idea for me to talk to a counselor about things.)
Kitten: Good luck with the injection!! Are there any risks or other issues associated with the actual administration of the injection? Or does the ugly stuff start a couple days later-?
Nov 9 2006, 06:09 AM
Octi, a couple of things:
First, on telling your mom--I don't think you made a poor decision. I think that somewhere you really do want your mom's support, you just don't want the support the way she's planning on delivering it. Which makes total sense to me.
In a weird way, it's almost like you've picked a time to address something longstanding between you and her. If this were me and my mom, and I were in your situation, I would want to call her up again and state really clearly that you'd love for her to "help", but I would really need her to do X, Y, and Z (as in very clearly tell her exactly what you want her to do: don't leave her any room for adding in her own plans on what she thinks you need). I'd want to tell her exactly why I would wish for her to limit herself to helping me in these specific ways--"I need you to do this for me so that I can look after this; It's really important that you help me by doing this because I have to accomplish this other thing and I can't do it unless you help in this way".
I wouldn't bother with "explaining things nicely". I'd only put my efforts into explaining things clearly--as in, I really need you to help me with this on my terms, mom; I need to get these things done now and anything that gets in the way of that will only cause me to spend more energy and time than I have". If you could communicate your need to be independent, make your own decisions which she's more than welcome to help you carry out--if you could make her understand this desire through her own capacity to empathise with you...then you two would definitely be on your way to growing your existing relationship into something far more mature and healthy. This may be an opportunity! But you are the one who is best poised to determine this, not me. If you think it's an entirely bad idea, then by all means: trust your self and your perception on this, and ask her to just listen to you over the phone and stop with the plans to come rescue you.
My heart is going out to you on this one--I know exactly how difficult this could be, only substitute your mom for my dad. One more thing: call your doc/family friend and gently remind him that you don't want your mom in on your dialogue with him. He'll get it: he's obligated to say nothing about your case to your mom professionally anyway.
As for who to talk to next, yes, it is worth investigating. Swelling and inflammation of the joints can actually alert us to any number of potential ailments worth looking into (for example, it may be something like gout which is causing it--which could alert a doctor to pay attention to your kidneys and heart; it may be something like anemia or hemochromatosis, which can send up symptoms like joint pain that doesn't resolve...so you always have to look deeper than just the "obvious" cause). Maybe this "stalling" is a blessing in disguise. Another reason not to give up and not to accept the "just settle in and manage this problem" conclusion.
As for the cranial sacral route--the reason I like this treatment so much is that it gets to emotional as well as physical causes for symptoms like this. I've also had a lot of success treating patients with homeopathy who also got physical support from cranial sacral therapy--one case in particular which the combination had spectacular results was in a case of a small 4 year old child who was a "failure to thrive" case--absolutely allergic to every food substance and completely on liquid food given intravenously only when she came to see me. She couldn't digest milk, was allergic to soy, nuts, various fruit, couldn't eat meat or eggs, could not eat anything solid any more, and suffered from extreme deficiencies in minerals, for which she was receiving heavy supplementation. She was WAY below height and weight for her age and the doctors in the children's hospital where she was being treated told the parents that they did not expect her to live much longer. She was given two different homeopathic remedies which had the most profound effects--the first allowing her to eat some solid food with no difficulty, but not doing too much more; the second finally allowing her to eat and digest a fairly restricted diet which involved a lot of solid foods with alternative grains, soy, and the very beginnings of milk tolerance--yogurt.
Once the diet improved, the parents started to bring her to a cranial sacral therapist to "help" ease her physical mobility and agility, as she was in a lot of pain physically. Within a short time (6 months or so) she had gained weight considerably, grown a couple of inches (but she was still smaller than almost everyone her age) and was eating absolutely anything she wanted, with NO allergies or sensitivities whatsoever. The doctors at the hospital told her parents to keep doing whatever they were doing, because it was obviously working. Her mom took her for cranial-sacral for about half a year or so, and then she didn't need the treatments anymore.
The girl is 10 now, growing like a weed, and really excelling at school. I think she regained the ability to eat with the homeopathy, but her growth was really helped along by the cranial sacral therapy--after all, she needed to catch up! She might have come along just fine without it, but I think the massage really helped her to acquire the crude and fine motor skills, the flexibility, and the ease of movement--and growth in height!--a little more quickly. Maybe a combination of approaches like this would really work for you, too, Octi. I would encourage it.
I understand why taking the Ruta was difficult--you're right about being cautious, though I would have welcomed you telling me how things went, good or bad, with the dose (instead of telling someone else about it--after all, I can antidote whatever I give that isn't having the right effect!). But you are right to be cautious--it is always better to have someone take your whole case and monitor it with you, and a local homeopath would be a little more immediate. I definitely recommend it even though the injury seems to be only mechanical (it never is "only" mechanical though). But it would help if you knew what to expect and had access to someone really well qualified.
I think you have a lot of options you could pursue to get better. And I think you know this too.
KittenB, much luck with the injection. Hope all goes well.
Nov 10 2006, 05:55 PM
just popping in, to give everyone a hug. Sorry I've been away, for a few days, and I have a lot of catching up to do... I'll post a proper reply a bit later.
Nov 24 2006, 11:25 AM
Hey all! I have been wanting to share this website with you all. I found it to be really wonderful.Chronic Babe.
It's for women who deal with any level of chronic health issues.
Nov 27 2006, 09:49 AM
Grr...argh...I am not feeling that great today. I am getting over either a cold or an allergy attack (I really don't know how to tell the difference) my knees hurt, my head hurts and I am having hot flashes. Yup! It's happening! I am on the medication and it is making things weird.
Seriously. Hot flashes are just weird. It's like all of the sudden a furnace turns on somewhere near my chin and everything gets really warm. It's not painful just distracting.
Dec 8 2006, 02:42 AM
Kitten, sorry I wasn't around to respond to your last post. Are you feeling better by now? BTW, I'm sure it's too late for this, but for future reference: a ginger infusion (fresh ginger, diced + boiling water) is great for getting over colds.
Also, thanks for the chronic babe link. That is a very cool site. The positivity is inspiring.
I actually came in here to say that I just had a long talk with the guy I've been seeing for the last 3 months or so, and he isn't interested in being with me if there's a chance I'll be disabled/ if I keep having these mobility and pain problems. Ouch.
Dec 8 2006, 12:06 PM
wow, octin, at least you found out early... hugs.
Dec 9 2006, 10:03 AM
Jeeze octin... but at least the idiot was honest. Can I still call him a stupid putz?
I am feeling better. But my mood has been rotten since Thursday. No real reason, just feeling whiney and full of self-pity BS. The effects of the Lupron-Depot come and go. The headaches sucks but seem to be the least frequent effect. The hotflashes may have mellowed (pleasepleaseplease!) And the insomnia gives me time to clean my house. Fun stuff.
But now, the fibroid seems to be making me just a tiny bit...incontinent. It's a problem when I laugh, sneeze, cough, dance, jump, run, etc. I really can't wait for this to be OVER!
Dec 9 2006, 11:31 AM
Kitten, the woman at the Chinese tea house I'm always at tells me that there's a certain type of oolong tea that's great for treating migraine type headaches. I came in with a non-migraine headache yesterday and she gave me a mint/green tea which worked well on it. Might be worth looking into! Also, are you doing kegels for the incontinence issue? Anyway, glad to hear you're feeling a bit better, and that you seem to be able to look on the bright side of all this!
I can definitely relate to having the whiney, self-pity days though. I was totally pitying myself two days ago because I had been weight lifting and did something that caused pretty intense pain in my shoulder... and I was imagining myself being pretty helpless, with the limited use of my lower body, plus limited use of half my upper body... I cried and cried. (But the good news is, my shoulder is almost 100% better now... I guess I just pulled a muscle or something, thank god. Scared me into thinking about hiring a personal trainer, though.)
Kitten, when is the treatment of the fibroid supposed to be all done with?
As for the putz: yes, you can definitely call him a putz! In fact, thank you for calling him a putz! In my world, it's fucking lame to do dating discrimination based on something like this. Dude, I have a big crush on a quadraplegic guy... I can't relate to spurning someone for having a disability. It's especially dumb because I don't even have a permanent or super severe disability. Whatever, it's his loss... which I'm sure he'll realize sooner or later, even if it's not until he runs into me getting my dance on at a club next year when I'm all better! And in the meantime, y'all are right: at least I know this about the person I'm seeing, and know it soon, and he was honest with me. Knowing what I know, I'm not going to wait around for him to watch my progress and decide if i'm still too disabled for him... I'm gonna go break things off myself today. Wish me luck...
Dec 9 2006, 12:14 PM
seriously octin-- who discriminates on something like that?! if it ever becomes as bad as you think it possibly could, it's still not the kind of "disability" that will really keep you from living your life, you just have to make adaptations for stuff like that. sounds like a cowardly thing and like an easy way out because physical disability seems ominous. if at any point my boyfriend was like, "i don't think i could stay with you if you keep pooping this much," it would be ridiculous, i would just have to laugh at what an idiot he would be. as long as you are not going to stand for this ruining your life (and you definately don't sound like the type of person who would just give up), there is no excuse for that.
btw. there was this really cute deaf guy at the mall the other day, and if i was single, i woulda been trying to remember sign language! i really think for anyone worthwile stuff like that is a non-issue!
kitten-- about the incontinence, until it subsides or the kegels do the trick, have you tried wearing lunapanties as backup? i use them for my period and they are so wonderfully comfortable, it really doesn't feel like you're wearing any protection at all. i know they're recommended for pregnancy related incontinence, so i'm sure they'd work, and they actually look inconspicuous and even sexy (my boyfriend thinks they're hot--i have the bikini style...tmi?) you can get them at lunapads.com, and the deluxe ones have a nylon layer to stop leakage, plus you can add extra layers of cotton fleece for extra absorption. and you just toss them in the laundry, so it saves cash! if you do get any though, the sizing is a bit on the small side--i'm usually xs but buy s.
man, i haven't even told you all about the ridiculous doctor's appointment i had last week...the guy was a total asshole and i'd been waiting three months for the appointment. now i'm going to have to wait just as long to get in to see someone new... fucking jerk doctors.
Dec 9 2006, 01:05 PM
midge, sorry to hear your doctor was a jackass! I had to go to FIVE before I found one I liked, so I think I can relate. Hey, in the general health question thread someone just posted a link about a site where people rate their doctors. Might be worth checking out if you're going to be shopping around for a new one. I think it's rateyourmd.com, or something like that.
Man, in general, I've become so disillusioned with doctors in the past year. I had this idea before that doctors, being experts, were trustworthy and were going to fix everything. And boy, was I wrong. It is actually possible to go to ten years (or whatever it is) of school to practice medicine and still be incompetant. Who knew? Anyway, now I've realized that the best approach (for me, anyway) is to see doctors as a potentially very helpful tool, nothing more and nothing less. I can use them to consult with, ask questions of, bounce ideas off of, and get suggestions from, but at the end of the day I am still the one in the driver's seat, I am still the one who is going to fix things if they're going to be fixed. Which is scary and empowering at the same time.
Midge- I totally hear you about making adaptations. I sort of understand where this dude is coming from: he could see being with me long-term except that he also sees himself travelling to far-off places on vacation, and doing active/outdoorsy hobbies... but yo, even if I didn't get better, those aren't mutually exclusive. I mean, if you care about someone, you plan your vacation so that you don't go to inaccessible places, right? And if you wanna be outdoorsy, you go kayaking or picnicing instead of hiking. Right? Am I crazy here? The other thing that is unacceptable to me (thanks for indulging my venting here, ladies!) is that he's sending me this message that I am not going to heal. He says that even though I and every damn doctor I've seen say I'll get better, we have to look at the empirical evidence (7 months with little progress) and realize that I probably won't. What the fuck?? First of all, he is no doctor, so where does he get off giving me that prognosis? And second of all, I do NOT need that sort of naysaying when I'm in the sometimes very tough recovery process! The more I think about this, man, the more I realize it's so over. Now if he'd only return my calls so I could break up with him already.
Dec 10 2006, 08:09 AM
Well, I am going to have to upgrade my initial rating to stupid asshole putz. And so not man enough for you. What you said about the trips and his negative attitude is all so true. Maybe you should text him a dump-o-gram. Normally I would never encourage break-up by texting but he deserves it.
Thanks for the advice, ladies. I have not been doing kegals and I will get back on them. As for the Luna pads, I have been using pantiliners as I really see no choice. My doctor says that I will notice immediate relief right after surgery, which will be mid-January. I am just looking forward to this being over. And the idea of 3-4 weeks w/o work does have an appeal. I plan on doing nothing but crochet and Veronica Mars DVDs for the first week. And drinking tea. Lots of tea.
Dec 10 2006, 12:57 PM
Kitten, yo, I think you totally have the right idea about taking advantage of the time off, seeing this as a positive thing! It reminds me... I used to LOVE getting sick when I was a kid because it meant I got to lay on the sofa all day and watch smurfs
When you're getting your tea-drinking on, can I recommend white tea? It's actually even higher in antioxidants than green tea, so it's great for healing. I don't know if you have a good tea retailer by you, but there's an awesome awesome tea house/ store in my city, and I think they do sales online. If you want I can link ya!
Also, kitten, it's awesome that there's an end in sight for your fibroid problem! With the holidays and all their madness coming, I'm sure mid January will sneak up before you know it! (I can't help but add-- DAMN, I wish I had a finite end date to my health problem! Waiting is harder when you don't know how long you have to do it.)
So, I talked to the dude last night to dump him, and it turned into a long discussion that gave me a better idea of what his issue is: apparently he didn't want to tell me before, but his problem is less with the constraints put on me/us because of my mobility issues, but rather --this is grand-- that he doesn't understand the physical causes of my knee problem so he thinks it might be psychosomatic, eg, I'm a little crazy. And he doesn't want to be with someone a little crazy. Say what? I can't decide if this is better or worse than the "I don't date disabled people" thing.
Dec 11 2006, 04:34 AM
It's worse, Octi. It demonstrates that he's--well, I'll use my father's description of such a man for you--he's the Son of the God of Ignorance. Who wants to waste time on an ignorant man?
There are so many amazing men in the world you could be with instead. Life is way too short.
I know you talked, but did you text-dump him anyway?
Dec 11 2006, 12:09 PM
Arg. So confused. On the one hand, you ladies are totally right: he's lame and should be dumped pronto. On the other hand... jeez, I guess I just try so hard to understand where someone's coming from that it makes me (overly) sympathetic: I figure that he's just confused and trying to draw some conclusion that makes sense to him, and bad at negotiating relationship issues like this... last we talked, he apologized for handling the issue really poorly in our first talk, and was on the verge of tears at one point. He called last night to say that he doesn't want to just end things like this and wants to get together to have another talk about things. I've tentatively agreed to that... I figured, what's wrong with talking?
Also, I'm not sure how much I want to be alone right now. Also, we have a good sex life.
But then, I'm not sure how much I want to be with someone who doesn't make me happy and is just sort of a passable diversion.
Hmph. Anyway, thanks for the empowerment, y'all. And sorry if this whole thing is OT and should be somewhere over in "The Mating Game."
Dec 11 2006, 12:49 PM
It seems that if you are able to accept him as a "passable diversion" and are not in too much danger of getting hurt, do what feels right. Good sex is hard to find, I have learned.
However, it is possible to be able to understand someone else's point of view but still be aware that he is not the person you need him to be at the moment. The comments that indicate that your problems are all in your head are insulting and show him to be a scared little boy.
Dec 11 2006, 01:44 PM
Oh, I know you're extremely sympathetic to others, and you can even empathize to the extent that you're describing here...but are you sure this isn't getting to you because you're sensitive to your physical ailment right now?
I think if you could participate in a "distraction" kind of relationship, you'd never be able to be as sympathetic as you are. It isn't so much what your boy said that would bother me, it's the fact that you need to be around people who aren't going to let their fears stand in your way; you need people who aren't going to dismiss you because "your ailment might be psychosomatic", but rather encourage you to keep believing that you will get better, no matter what doctors or anyone else say is your prognosis. Especially if that is what you've set your mind and heart to do.
If he can be made to understand this, and then act on it, as a result of your upcoming talk--then maybe he's worth your sympathy and consideration. If not, Octi, you've got everything going for you; don't settle for someone who can't make you happy.
Dec 11 2006, 03:07 PM
Oh chacha, this is absolutely getting to me because I'm sensitive about this health issue. Absolutely. Like you said, I don't need to keep someone around if they're going to be a negative presence rather than an encouraging one to help me in the recovery process. And I have already told him that. I'm sort of hoping that it has gotten through to him, and that's why he wants to talk about it again. (On the other hand, I'm almost hoping it hasn't gotten through to him, because it will make my decision oh-so-much easier.)
Thanks again for the input and support, kitten and chacha.
Dec 18 2006, 01:15 AM
Hi ladies. Just wondering how all the sick (or maybe not so sick, by now?) busties are doing lately--?
Dec 18 2006, 10:37 AM
I am kind of in a *sigh* kind of mood about everything. It's not pretty but I just feel slightly depressed. I had a friend do a tarot card reading for me last night. Bit of a mistake. I think she wanted to keep everything light as we were at a party but my reading was all heavy. Nothing but, "The next six months are going to be a lot of hard work and you are going to have to be brave and lonely and learn to stand and speak up for yourself." Which sounds much like the last
six months! Especially the lonely/alone part. Whatever. And I just called my doctor because I think I am getting a yeast infection. Once I noticed that I realized that I have been getting lazy about my health again. I have stopped grocery shopping, started to buy more food day-by-day even though I know that I eat way more processed foods and dairy when that is the case. I have stopped taking my daily acidopholus (keeping it in the fridge means I forget it it there.) The only thing I have gotten better at in my workout and that is more out of fear of getting my double chin back due to activity then to actual concern of my health. Argh. I feel very shallow and like a total drama-queen. I just don't know how I can ask for all of the help I am going to need in the coming weeks. I need someone to pick my mom up from the bus station. I need someone to pick me up from the hospital. I need help getting groceries up the stairs, taking my trash out, changing the kitty litter. I live alone, for the goddess' sake. How am I going to anything done?
And I think I am going to have to put my cat on anti-anxiety medication.
What the hell?!