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 Posted: Sun Aug 23, 2009 6:24 pm
XKightX The needles, hole in teh tongue and lip. I understand. It does hurt. Though with a post like that, I don't really know how to reply, or offer my assistance..Though doctors are there to "make your day" better, though they make your life healthy.. Sometimes pain is worth health, happiness, and more to be unexplained. Not to offend or make it seem like I don't understand.
Ladies please, if you would give me a chance to explain what he was trying to say… you might be able to see that XKightX has a good point.
What he was trying to say was simply that even though you sometimes have to put yourself through large amounts of pain, the outcome or rather the goal of getting better can only be obtained one way and that the doctors that are there trying to help you are only doing their job.
In the end, they are working to heal your body are they not? Yes, it will be painful and yes it is very understandable for you to be “thrilled” (please note that I am being sarcastic when i say thrilled) with them after having been put through that.
Any questions?
Much love,
Izy
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Posted: Sun Aug 23, 2009 8:50 pm
I'm hoping that some of the other commenters will reply to Izy's message too so we can build our opinions and thoughts off of one another. But I'll get the ball rolling.
Izy, thank you for taking the time to read all of our posts, and responding to our queries. That's really sweet of you >< I can't be certain what the others were confused about exactly, but for me the point which left me wondering after reading both yours and Kight's messages was this: we are going through all of this pain, yet may never find a cure or get any improvement from it. Personally, I am in so much pain already, that I want to avoid any excess pain as much as possible. The truth of the matter for me at least is that they doubt this is going to get any better, only worse. So why increase my pain levels, when they don't have any thing that will help lower them after the test/procedure/treatment is done? I have had my share of failed treatments, of tests which made my pain shoot through the roof, never to come back down. And truthfully, I'm over that sort of thing. In a way, it's a DNR - if it's not going to get better, make it as comfortable as possible in the mean time. Which for me, means avoiding the things which are going to make it worse. Because right now, I can still feel electricity being shot through my body. I can still feel my insides being ripped apart with each shock. And trust me when I say it's not nice. It's unbearable, in fact.
Anyway, I best be going as I'm about to video chat someone very dear to my heart! It will be the first time I have actually spoken to someone with CRPS. >< My love to all of you, Ailsa xox
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bittersweet and evocative
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A_Wolf_Drowning_In_Blood Crew
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Posted: Mon Aug 24, 2009 5:43 am
I understand now what both Kight and Izy have said. (And I believe I have seen Izy in a few Avi Competitions? No? lol)
And I agree with Ailsa; we have so much pain and aren't sure if it will ever go away or even if doctors really are on the "verge" of finding a cure. Enjoy your chat, Ailsa!
How has everybody else been??? I'm fine, but this morning I was exercising my horses (Which is good therapy for me!!!) when my stallion completely missed a jump and broke one of his legs!!! D: I was thrown of, but we were riding in sand and I was okay. THe vet has come, and says it's more of a sprain than a break and should be fine, but I'm worried D:
I was thinking, maybe that "party" could be held Friday... Ailsa, where do you live, again? teehee
Have a HAPPY Day!!
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Posted: Mon Aug 24, 2009 7:15 am
Friends, I've gone back over our entire thread, as promised, and read up on all I've missed during vacation. I'll try to keep my thoughts organized but, please forgive me if I get garbled. I have colors for each person but I know there probably is information for each of you so I encourage you to read all the way through.
Kira, you say that I've been the "base of your strength at times." You have grown so since we met over 2 years ago! You are a strong young woman with so much to look forward to in life. Thank you for your kind words, know that in my first year on Gaia and during some of my more difficult health issues it was your willingness to listen and share that helped soften what I was going through. Thank you for sharing Kate Voegele's song, it is beautiful.
Boldie, I'm so sorry you aren't getting any better with the medication change. I worry about you so much! I wanted you to know that I may not be immediately reachable but I will respond to my email messages because they hit my phone – just send me a “,” if that’s all you can do.
Also, I wanted you to know that I remember when I received notice that I could not be employed any longer; even though the doctor's had already told me, it was terrible when I received notification from my employer. I’m sorry I was away when this happened to you.
Ailsa, firstly, I'm sorry your RSD has spread of all things I can relate to this completely as you know my RSD was diagnosed as full body in June of this year. The testing you have recently undergone is not something I’m foreign to either as I’ve had a number of electro-studies but mine were to determine nerve function not, for therapy. It’s very painful and yet, the only way for doctor’s to supposedly know if our nerves are functioning correctly. It is quite frustrating to feel like a guinea pig being tested and tested with no answers, it’s something I’ve gone through for yours – but differently than you in that they keep coming up with same answers RSD/CRPS. Unbelievable! If only doctor’s could trust their colleagues rather than retest and retest but alas in some ways we are at the mercy of those physicians who attempt to treat us and must hope and pray what we go through in some way will help us.
Thank you for being open to the ideas of others – it is the only way for us truly to get to know one another. xKightx is a good friend to our family and in fact, helped me during the summer during a flare. He, his brother, and Izy (my daughter) remind me that sometimes we must endure those things that we have no control over in order to find answers to our medical problems.
You shared your frustration in having depression and how others treat you - I SO GET THAT! Even though, it's been 2 years since I felt the horrible depth of darkness swallow me up completely I still am treated so strangely by some people. What frustrates me the most is now that I'm more in control of my emotions it's like I'm not allowed to have ups and downs. I'm supposed to be "fixed" - it's mind boggling - I'm not suddenly without chronic illness, it didn't go away and yes I still see a Psychologist.
I'm wondering about the "I'm not sick day" it's kind of strange to me but I'm curious if that concept helped you at all? I really liked the “Aisla's Spoony Day”- I need to do this too, I think it's a brilliant exercise and may help me to balance my days better. On the one's that seem like the pain is better controlled I seem to overdo it and the ones that are really bad I always feel like I should have done more. (whether that's realistic or not)
Your UGH boots! Sweetie I've had to wear SAS sandals and I hate them - I call them my "beautifully, ugly shoes". My clothes are even worse - I live in clothes that are 1 to 2 sizes to big - mostly men's clothing so it's loose enough that it doesn't rub or constrict me and I feel like a big, frumpy slob. I want to be feminine but now that I've gained so much weight I struggle with it every time I go to the store. I actually mentioned losing weight to one of my doctor's and he laughed because that's what my largest concern was at the time and told me to accept that I would always be overweight.
Wolf, although you may not suffer from chronic pain, you have health issues which affect your daily living. I'm glad that you chose to join us as your contributions have been insightful and supportive.
Your boyfriend sounds like a really supportive guy but alas is your knee any better, especially after the incident with your horse this morning? (your horse is ok too, right?)
AS8B, (my niece) I'm proud of you (no matter how corny that sounds). I remember how much you hurt when we thought you broke your tailbone and then when the doctors explained it didn't take the pain away but you got through it! Your compassion and empathy have helped me many times, and I know that this gift will help others in the future.
One of the most frequent themes is trying to understand what people are going through. Might I refer you to
Gin has taken the time to develop a detailed list of medical conditions that affect those of us who participate in her thread.
Also, I'm sure most of us would be willing to help explain things better for you, just ask.
This very long post is at it's end. I believe I'm caught up.
Always hoping for you to have a better day,
Madralyn
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Posted: Mon Aug 24, 2009 7:47 am
Ailsa and A_Wolf_Drowning_In_Blood,
I hope that you two find a way to over come these challenges in your life and at the least are able to find some good from these events though I know it is hard to do at times.
Much love,
Izy
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Posted: Mon Aug 24, 2009 11:27 pm
Izy, I can tell you truthfully that I have found good in what I've been through, despite all of the bad. Meeting your Mum, for instance, has been amazing. Truly a life saver - in all senses of the word, literally and metaphorically. And I really hope that I didn't sound rude in my last post. I didn't mean it that way at all! I have to admit, it was a difficult thing to reply to, as it was an idea that I find quite hard to grasp at this point in time, but I really hope I didn't come across ungrateful or rude ><
Madralyn, thank you so much for reading all of our posts!!! I know that wasn't a small task! Firstly, can I say that talking to you yesterday was truly amazing. Thank you so much for that!! I really hope we can do it again, because speaking to someone, instead of typing, is so much more meaningful. I just thought I'd say that before I moved onto replying to your message!
At the time, it was hard to believe that anyone else had gone through a treatment like I was doing, but afterwards I always seem to remember there are others out there. Does that make sense? I'm a bit tired, after 7 hours of exams today, so I'm finding it hard to get my words out properly. I have to agree about doctors trusting others. I mean, if 3 doctors have all diagnosed something, why do you have to go through all the same tests? That's what really frustrates me when I've done something ten times, and a new doctor comes along and wants to do it again. I say that I have already completed that particular test more times that I can count, but they never believe. I doubt that they even read my notes.
I can't believe that people don't cut you some slack when you're having a bad day. That to me, is one of the hardest things to deal with. On those days, you need people to accept that you're not feeling great, and to leave it at that. I say this in all honesty - I'm so proud of you that you have got out of the darkness that you were swallowed up by. I can't say that I have even come close to get out of there yet, but I still hold hope that one day I will see the 'light' as it is referred to. I think it would be really cool if a group of us did our Spoon Days and posted them here. Of course, that's only if you feel comfortable having other people read them!
Oh gosh, Madralyn, UGH boots is such a good name for them. I can't believe I hadn't thought of that yet! I totally get the clothes issue, too. I hate shopping. Hate it with a passion. It's so hard to find something that is comfortable, covers my legs yet isn't tight, and on top of that can allow for all the weight my medication has caused me to put on. Friends complain about shopping, but they don't know the half of it!! ><
Anyway, my friend is here so I best go. Oh, and the following is a message for you from her heart love to you all xox
IM EFFIE im 17 (older than ailsa) i come ova and we're like uber bet m8s an i cheer her up and we laugh and have a GREAT time!!!!
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bittersweet and evocative
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A_Wolf_Drowning_In_Blood Crew
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Posted: Tue Aug 25, 2009 8:44 am
Madralyn, thank you for your concerns. I'm fine, just a little bruising. My horse, well, it's a little early to tell, but he's young. He should be fine. At least it's only one of his legs and not both of them. I feel so stupid for not putting on his front bandadges! (Those are put on for that very reason!!) And I have to race this weekend! I guess I'll ride my mare.
Ailsa, I don't know what to say! I've only had two doctors my whole life. One when I was little, then he retired so I got a new one. But I bet it's gotta suck that all the doctors wanna do the same thing. This loose clothing thing has gotta suck, too! I mean, I like to shop. But I can wear basically anything >.<
Izy, I guess I do find some good things... I can't think of any right now... but boldie knows that once I was attacked by a stray pitbull. Then I took him in. (His name is Street and is now--with some socializing and love-- as sweet as can be! I think he was just scared being starved, and such) So, that misfortuane gave me a sweet dog!
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Posted: Tue Aug 25, 2009 9:18 am
Ailsa, it was wonderful to talk to you - Amazing - doesn't even seem to fit the bill! In fact, this morning I was reading an article about CRPS (RSD) and I was thinking about the information I was reading and how to get it to you. I think I may just post the RSDSA newsletters to you when I'm finished. I found there is a RSD researcher/doctor in Australia, so maybe that could be a reference for your docs - maybe it's wishful thinking but, we can't give up now can we smile It's great that you have such close mates, like Effie to turn to. Please tell her hello biggrin
Wolf, I'm glad you're doing better. Wow, racing! We'll have to chat in a different forum - maybe we could start something up in the chatterbox, too like hobbies or something, best I should PM you about this than talk here.
Boldie, I hope you are fairing better than you were, I know that your pain has got to be bad as I've noticed how little you can post. I'm so sorry you are suffering and wish those darn doctors could help you more. Lot's of Love from all of us (I'm sure they don't mind me speaking for you) wink
I'm sorry I have to keep this short because I have a doctor appointment this morning - Glaucoma Field of Vision test, to see if there has been any change in the last 6 months - although I won't have the results for another few weeks until I actually see my doctor.
Never Give Up!
Madralyn
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A_Wolf_Drowning_In_Blood Crew
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Posted: Tue Aug 25, 2009 3:24 pm
How'd that doctor's appointment go? >.<
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Posted: Tue Aug 25, 2009 11:58 pm
I apologize in advance if I don't make much sense. I've just got out of an 4 hour exam, and my brain is slowly shriveling up into nothingness >.< Plus the two smallest fingers on my writing hand are numb because I had to ice them after writing so much. My medication means my circulation is really bad in my hands and feet, meaning writing for long period times really screws it up. Anyway, on to my actual post!
Madralyn, You receive newsletters? Wow - there's nothing like that here. At all!!! I seriously feel like I'm on a desert island sometimes. I mean, I have doctors and all that, so maybe it's a desert island with a rudimentary medical clinic? It's just my doctors don't even know what they're doing half the time!! Oh, and Effie says hi back!! How did your doctors appointment go? I hope it was ok, and I'm praying that the results are good for you.
Wolf, wow, only two doctors?! That's really impressive!! I think I'm currently seeing 14 doctors, if you include my physio, psychologist, psychiatrist and all of them. You're really lucky that you can wear anything!!!
I better go and help prepare dinner, before I do some more study for my exam tomorrow. Oh, I just love exams...
Love to you all, and oh, Madralyn, do you want to arrange another time, maybe this coming weekend, or start of next week? That would be really cool xox
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bittersweet and evocative
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Posted: Wed Aug 26, 2009 3:38 pm
I have to apologize to everyone for really not being here. I'm reading the posts, but just haven't posted. I am in a very bad slump. A huge depression that is sending me to hell, it seems. Apparently, my husband is no longer going to "feel sorry for me anymore", though he didn't say that, but we have been on each others' nerves more than I care to say and he's not even thinking about the pain I DO have. This is actually more than what I wanted to say about that.... The pain has not been any better. In fact, last few days it's left me unable to walk, and now I just limp on my left side. I'm once again BACK on the couch so I can wake up somewhat not in dire pain, but now THAT'S not working anymore. My neurosurgeon pretty much has dismissed me, since I won't be having any more surgeries, so it's pretty much up to my PCP for questions, answers and pain relief. ... nice.... Btw, Madralyn, YES, I did call them back, but they didn't call ME back. Everyone keeps telling me how strong I am, and that I am strong willed. What happened to that? What happened to that power I used to have? Is it I'm too tired to care now? Is it the pain that is wearing me down to nothing? Is it that I just don't care now? Many questions-no answers. I am going to go now, but, I AM here, I'm just not posting, and I'm sorry for that.
I hope everyone is feeling just slightly better, because I know I can't assume ALL better, or SOMEWHAT better. So, that's why I said "slightly" better. This black hole we were talking about Ailsa? It is SOOOOOO big, I can fit my entire body in it now. How about that?
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Posted: Wed Aug 26, 2009 4:58 pm
Aw! Poor boldie!!! My Dad has a back problem too, and he uses a inversion bed, although I doubt he has the same thing as you and/or that it will be of any use to you... Oh well, just trying =D
Hi Effie!
Ailsa, I mean, I've only had two doctors, like... docter docters, you know? I also have a dentist, dermetologist... etc. Then if I go to the hospital, I've got all those people... but I don't have 500 diffrent doctors that I equally see. You know what I mean?
Sorry the post is short, Lost my trian of thought! LOL!!!
Be back in the mornin'!
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A_Wolf_Drowning_In_Blood Crew
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Posted: Wed Aug 26, 2009 6:15 pm
Thanks for the doctor well wishes but, alas no news as I only was their for the Field Vision Test and won't know the results until I actually see my Ophthalmologist at the end of September.
Wolf- You are a fortunate gal, only having 2 doctors. I've seen well over 30 in the past 7 years and it's entirely too many!!
Ailsa - Sounds as if exams are keeping your mind off the pain, this is good, hopefully it's better. I'll talk to you on a PM about times and such, but soon I hope.
Boldie- Please read back, hear the words you've spoken to those you have helped. Your friends stand round you as you feel yourself sliding further away, reach out and grasp to the love we have for you.
I'm hoping for some rest this evening as I'm having so warning signs that mean rest or my body's going to force it upon me. Fortunately my husband was willing to pick up my kids so I've got a few moments but many.
Nite.
Madralyn
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Posted: Wed Aug 26, 2009 7:01 pm
ello,
ailsa - 14 doctors!!! whoa! that's more than i can coun on my fingers!
wolf -i hope you are doing good!
boldie - you can do it.
madralyn - oi, i'm glad you are doing good.
i'm tired, and totaly out of it.
i'll post again another day.
love,
AS 8b
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