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 Posted: Sun Jul 12, 2009 11:19 am
Oh, Ailsa, that was a very nice thing to say to me.. Thank you! I don't consider it to be courage, when I'm in so much pain.... I just do it, because I know it needs to be done. Remember, I've been dealing with this exactly 5 years now. Yes, the pain is MUCH greater now than then, but okay--take this for instance... I knew the bathtub had to be cleaned, so instead of bending down and making myself more miserable, (because it's hard for me to bend, sit, stand, lay, you name it.) I got in the tub barefoot, and used a sponge and comet and had my feet clean the tub while I held onto the bars in the shower. I have to find ways to make my life easier while "dealing" with the pain. And it did work, for the most part. I mean it's not 100% spotless, but it's a lot cleaner than what it was. lol I go to a pain specialist on July 27th, but even my husband said that it's a wasted visit, but I have to go anyways, because of the insurance and social security. I doubt it very much if anyone has found a "cure" for what I have, so yeah,.... I'm gonna have to "deal" with it. Makes me sick. Same with you, too. There's no cure for RSD, is there? Nope... didn't think so. I think doctors or people who research diseases-like even the CDC, NEED to come up with cures other than stuff that deals with the heart, and that sort of thing. They need to look OUTSIDE of the box for the other people who are dealing with chronic pain, imo. Well......I'm thinking that'll never happen, so..........Sending YOU lots of HUGS and LOVE and PRAYERS, also. xoxoxoxox
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Posted: Sun Jul 12, 2009 11:20 am
Oh by the way.... if none of that made sense, I have to apologize, because I just took some medicine, and sometimes it makes me funny. So, I really hope you got the jist of what I was saying.....lol
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bittersweet and evocative
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Posted: Sun Jul 12, 2009 8:21 pm
It did make sense! Don't worry! And I totally get like that once I take my ketamine - highly amusing for my friends who are talking to me. Apparently last time I started talking about warthogs, when we were previously discussing school!!
Yeah, no cure for RSD, and I doubt that in my life time, they'll find one. People always say, "it could be worse", but really, isn't it better to have something more serious, but for doctors to actually KNOW what they're doing, compared to having somethings as obscure as us, that have no known cures or fixes? A lot days, I just wish that if God wanted to put me through a hardship to learn something, that He had chosen something more common and widely researched. I was talking to my doctor the other day, and I mentioned that overseas there are Chronic Illness Awareness days. We have NOTHING here in NZ, and it's never discussed, so we are going to contact the NZ Pain Services (didn't know that existed...lol) and see if we can set something up. Start small, right?
How is your day going today? My pain hasn't settled down, so my friend is coming over to just hang out and we may play playstation >< Something to distract me. That's what I really need! And Boldie, it IS courage. The way that you have continued living. The fact you get up in the morning, and do jobs, such as cleaning, is amazing, and extremely courageous. It's so so easy to slip, to blend into the background, and pretend that things, like cleaning the bath, don't exist. I know this only too well. I try, but most days the pain gets the better of me. I'll set my alarm, and once it goes off, I'll just sit on my bed for another hour, completely zoned out. I used to be good and getting on with things, but it's been so long now, that part of me has given in. Unfortunately, that part of me seems to be growing.
I must go, because I can hear knocking, so I better make my way to the door. Sorry for the rant >< Love you lots.
In prayers, and God's love (mine too, of course!), Ailsa xox
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Posted: Fri Jul 17, 2009 12:41 pm
Ailsa, I'm sorry for not writing any sooner. I've been having issues AGAIN. It isn't the first time, and I assure you, it won't be the last. I've been here, just here and there.... Big flare-ups, can't sit in a chair for any lengths of time and just been in a lousy mood lately. Sorry..... No negative vibes here, but just telling you the real deal. So, I must end this before I do say something bad and negative. lol CYA and talk to you later.........
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bittersweet and evocative
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Posted: Fri Jul 17, 2009 5:14 pm
Hey, I'm sorry to hear that things aren't going too well on your end. I'll pray that they improve heart Don't worrying about not replying here - the whole point is that we are here, thinking of you, and even if you haven't replied yet, it doesn't mean that I think any less of you. I'm off to get ready to go to Harry Potter! Not so certain how the movies is going to work, with the whole lack of eyesight, but it's all part of the experience anyway ><
Boldie, hang in there. I know just how tough it can e, but remember that I'm here praying for you, and sending all the love I can muster your way.
xox love Ailsa xox
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Posted: Tue Jul 21, 2009 10:26 am
Ailsa, and to everyone else: I fell yesterday. Was walking a dog, I guess you could call it ours, but it wasn't my baby Coda. My husband picked him up from a corner where some people were trying to get rid of these puppies, and he chose a male with his ribs showing, so he could bring him back to "life", so to speak. Well, yesterday, I bought him a collar, and decided to walk slow and see what kind of skills he had. He's been getting outta the fence and we know HOW he's getting out, but he's a very hyper dog. He didn't want to go with me, and I had to drag him alittle. Thank God, one of my neighbors was outside, so with her walking her dog and me with My dog, we figured, her dog would teach him how to "walk" on a leash. Well, it worked for maybe a few steps, then I said this isn't working, so I turned around to go back to the house. As soon as he KNEW where he was, he took off on me, and made me fall.I landed on my right side, but, I wasn't sure if I had broken anything, and some other neighbors came out, and one brought a wheel chair. They wheeled me back to me house, and Tina (the neighbor with the one dog) and my husband lifted me back inside the house onto the couch, where I couldn't move. I couldn't feel ANYTHING on my right hand side, but my left side was hurting to the point of being stabbed. Some wanted to call 911, and I told them no. I'm glad, because we couldn't afford YET another bill from the hospital. My husband gave me my pain pills, and 2 effexors, and that sorta put me in la-la land. Still couldn't get off the couch, though, until it was time to go to the bathroom. I took it very slow and used every bit of furniture I had to hang on to. ................... Well, that was yesterday, and today, I'm feeling VERY bruised inside, and shaky. The Very worst thing I feel that I'm most afraid of is.........FALLING. I don't know if I screwed up my back more, if the pins got loose, or what. I can walk today, but not very fast. And I had to literally ROLL out of bed this morning. Please pray that I'm okay. I know walking is the only thing I can do (and not that fast even), but it's better than just laying in one spot, so I get sore from staying in that one spot. Yesterday it was a must. Today, I feel, even though I'm gonna take it easy, I need to get up and get my own drink, etc... Wouldn't you think that'd be the best thing for me? I just don't know anymore, but that's what I'm thinking. Please think of me, and say a little prayer for me, if you wouldn't mind. I'm still thinking about the whole episode......
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bittersweet and evocative
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Posted: Tue Jul 21, 2009 9:15 pm
Oh, Boldie. I am so so sorry to hear about your fall. You are most definately in my prayers and thoughts. That is horrible. You're so lucky that you have kind neighbours who are there looking out for you. I'm just so pleased that God placed caring people around you when you fell, so as you weren't left there by yourself, unable to move or go anywhere. But things could definately improve - I can see that. Even from my tiny island, in the corner of the map, that more often that not gets drawn joined to Australia, wiping us off the face of the Earth!! This just doesn't seem fair, at all. Why does it always rain on the people that most deserve the sun? I still have been unable to answer that question, but I am working on it. All I CAN tell you, is that the fact that you go through all this, yet are still the wonderful and inspirational person that you are, is outstanding. Actually. It amazes me every time I read your comments, or write to you, that you are able to help me so much, when your own life is so hard. So thank you so much for the Boldie. I'm off to get ready for choir, although I have lost my voice and therefore won't be doing much singing! Oh, a quick prayer request. I know your life is tough at the moment, so don't worry if this is too much to ask, but my Grandad's death has shaken my family a lot, and we're off to Auckland on Friday to support my Grandma, and my Uncle & his family. Could you please pray that God supports us, and comforts us when we're the most sad? Thank you, and take care, my darling! xx Ailsa xx
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Posted: Wed Jul 22, 2009 10:44 am
Oh, Ailsa, Absolutely !! That, you considered to be so much for me? ut-uh.... ANY time, ANY one needs prayers said for them, ...WAIT! ... I'm trying to get my breath here...*gasps... That is MY HONOR to pray for someone new that comes into my life. I know your granddad------ through you, through the spirits, through the hand that outreaches, with open palm, and shows it to everyone....Yes, I will absolutely pray for your family in this time of sorrow. Sorrow because he is no longer with us, but REJOICE, because he is seated with God. He is no longer suffering, or hurting anymore. I SAY REJOICE that your Granddad has ascended into heaven and is now looking down at your family. REJOICE that he had the pleasure of meeting our Savior.
I hope I have not offended you in ANY POSSIBLE way, ok? I think I got carried away, but I remember a few years' back, the Pastor's daughter had died at my church. And none of the family was sad. They were rejoicing, because their daughter was in heaven. And it, to me, almost thought I was jealous, because she got to go and I didn't. It's not morbid, like you may think. It wasn't like I was having suicidal thoughts or anything bad like that. I was jealous because she's with the Lord Almighty, and we're still down here with the traffic, the sounds, the people shouting, people getting sick, the honking of cars, the polluted air we all breathe. You see? I hope this comforts you some. You're in my thoughts, prayers, and in my heart.
Love, boldie
EDIT:... and on the rest of your post, I will comment later, ok? Be safe driving.
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bittersweet and evocative
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Posted: Thu Jul 23, 2009 2:36 am
Thank you so much Boldie. Thank you. That means a lot. And you didn't offend me at ALL. I agree - I should rejoice, because he is no longer suffering here, and can finally live pain free beside our Lord. It's a comforting thought in this sad time. I must be going to pack my suitcase, but I'll be back in three days. I hope you're feeling ok now, and I'll talk to you soon. xx love and Bless, Ailsa xx
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Posted: Mon Jul 27, 2009 7:24 pm
bittersweet and evocative Hey nice to meet you!! And to see that you've been reading up here >< Aren't the others who post here amazing? It amazes me every day how strong Madralyn and Boldie, and they give me so much hope that I, too, can live with chronic pain and be strong. I hope you stick around here! haha I've had a pretty good day, just long and quite sore. Hopefully I'll be able to talk to you again! xx And it is equally nice to meet you~! I know I'm late replying to this, it's a bad habit. They are amazing, you all are. I haven't quite become familar with Boldie, yet, but I have known Madralyn for a while and she has been the base of my strength on more than one occasion. My thoughts and prayers go out to you heart
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Kira-fightingdreamer Crew
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bittersweet and evocative
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Posted: Tue Jul 28, 2009 8:23 pm
Kira-fightingdreamer And it is equally nice to meet you~! I know I'm late replying to this, it's a bad habit. They are amazing, you all are. I haven't quite become familar with Boldie, yet, but I have known Madralyn for a while and she has been the base of my strength on more than one occasion. My thoughts and prayers go out to you heart Thank you very much for your thoughts!! Your prayers are much appreciated also. On days when it feels like the end would be better than whatever is happening, it's a comfort knowing there are people out there thinking of you. How has your day been? xx
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Posted: Wed Jul 29, 2009 9:51 am
Kira-fightingdreamer bittersweet and evocative Hey nice to meet you!! And to see that you've been reading up here >< Aren't the others who post here amazing? It amazes me every day how strong Madralyn and Boldie, and they give me so much hope that I, too, can live with chronic pain and be strong. I hope you stick around here! haha I've had a pretty good day, just long and quite sore. Hopefully I'll be able to talk to you again! xx And it is equally nice to meet you~! I know I'm late replying to this, it's a bad habit. They are amazing, you all are. I haven't quite become familar with Boldie, yet, but I have known Madralyn for a while and she has been the base of my strength on more than one occasion. My thoughts and prayers go out to you heart
~boldie
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Posted: Wed Jul 29, 2009 10:08 am
Ailsa, I went to a pain management specialist on Monday. Do you know what he wants to do to me? OMG! He wants to perform acupuncture on my back! I just shook my head no. Then he mentioned he wants to take like a 5 to 6 inch needle and stick it in my spine for my sacral iliac pain. I told him straight out, that I had epidural injections in my lower lumbar with another specialist. The first one worked pretty good, but the other 2 (series of 3 shots) were worthless. No one is sticking that long of a needle in me again ! It's painful!
I don't think I'll be going back to him. He was foreign, as well, and it really took a concentrating "ear" to listen to him. I told him I would think about things, and MAYBE call him in 2 weeks. My neurosurgeon wanted me to go to him, not to be able to go back to work-which is never going to happen, but to make me "comfortable". (Doctor's words exactly) The doctors are worried about my "quality of life". lol You really don't want to know what I think about that. lmao
So, that's what is new with me. Here I'm just rambling on, and didn't have the courtesy to ask how you're doing. Are you in the hospital again? How ARE you feeling? Write back. Because the more people see and read about us having chronic pain, and dealing with it, maybe just maybe, they'll feel comfortable enough to speak out and possibly we all can comfort him/her. I keep hoping. (crosses fingers and wishes more people would come out of the woodwork)
biggrin Well, that's about it for me........ I'll talk to ya'll later! God Bless, Ailsa!!!!
HUGZ
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Posted: Wed Jul 29, 2009 5:56 pm
bittersweet and evocative Thank you very much for your thoughts!! Your prayers are much appreciated also. On days when it feels like the end would be better than whatever is happening, it's a comfort knowing there are people out there thinking of you. How has your day been? xx My day has been, just. Well, normal. I don't suffer from any chronic pain, so I've been spending the past couple days reading and rereading all the posts in this thread. One, to try and get to better understand some of the people who post most often in this guild, and two because I've known Madralyn for a while but my understanding of her condition, and all of yours is very small. *big sigh* But I still wish to become an active part of this thread, offering support to you all. Ah, and Boldie. We've been having, lovely little PMs back and forth, but hello^^ I really hope that over time we can become close..
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Kira-fightingdreamer Crew
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Posted: Wed Jul 29, 2009 8:39 pm
Kira, I already feel close to you. Isn't that funny, though? You're easy going, and I am, and I don't know, but, I just feel like we've got a lot in common, despite our age difference.
If you've been reading all these posts, Good Lord, I'm surprised you don't have a headache by now! LOL There's been a lot said in just these 4 pages. hehe But Kira, your efforts ARE appreciative and I hope we can become closer friends. And I also appreciate your support. Everybody needs someone to talk to at one point or another, and Ailsa and I do like to talk. lol But, this is what this thread is all about. Being positive, upbeat, supportive of one another and to lend an ear, or a shoulder. That was my goal when deciding to make this thread. I'm so glad we're all beginning to be one big family. Thank you !! blaugh
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