Another newbie in pain

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WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/26/2010 9:57 PM (GMT -7)   
I am also so glad I found this site...finally a place where I do not have to pretend I am OK...so tired of crying in the shower so no one hears me or when I am alone...everyone is so concerned that I am careful to not upset them more...yes, I have to take care of me, but when I tell the truth about the amount of pain I am in, I either get watched over like a baby chick or told 101 suggestions, most of which I have tried...I was hit by a truck and left for dead on the side of the road 6 years ago...have seen 81 providers of all types and do all the conventional treatments now (e.g. PT, massage, swim, stretching, meds etc.) and it all hurts...have fibro, poorly healed pelvic fractures (undetected by first MD), arthritis, PTSD, insomnia, sadness and depression grieving the loss of my function and on and on...thank you for reading and wishing all of you comfort...big hugs, J


It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)


Post Edited (WhiteStone) : 2/26/2010 10:00:57 PM (GMT-7)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/26/2010 10:21 PM (GMT -7)   
WhiteStone,

Wow! It sounds like you have had quite a rough road! I'm sorry that it took all it did for you to find your way here, but I too am glad that you were able to find us. This is a fantastic site full of compassionate, caring people. You won't find better, more understanding friends anywhere! Welcome to the CP board!

hugs,
Skeye

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/27/2010 12:13 AM (GMT -7)   
Hi White Stone and welcome to the family!

I know there are members here who can totally empathize with you. Some have so many ailments that you wonder how they are still surviving. But no matter how much you have going on we are here for each other to help with comfort, suggestions or just a shoulder to cry on. No need to cry in the shower any more...you have us. I must admit I'm a shower crier too. Sometimes it's just easier that way.

Always feel free to ask questions, join in our daily Koffee Klatch and come to our Thursday night Chats. Not only do we focus on pain and helping each other, we also remember that we have the same desires to laugh and have fun in our lives like the rest of the world. It's easy to forget.

Warmest hugs,
Chutzie
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/27/2010 6:56 AM (GMT -7)   
Thanks for the warm welcome...yes, sometimes I am so tired of all of this, but I know how much any SH would hurt others that I know I would never do that...also, I am a Sr Mod on a pro-life su forum so I see the after effects each day...as you said, I am here too to support others and hope that a cyber hug would not hurt as much as one in RL...thanks again, and hope today is one filled with comfort...J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/27/2010 7:11 AM (GMT -7)   
WhiteStone,
Welcome! After my kiddo's go to school and my husband leaves for work, that's my time. I use it doing breathing I used while in labor with my children, I use it meditating and I often just cry. It's like you were saying, I too am mourning the loss of mobility. The huge loss of being free to live a whole day, much less a minute! without pain. So, I also come here and feel the comfort of words from others. There is much compassion in this group and I wouldn't give up even one of you. I'm so glad you found us and I hope your pain is relieved a bit even for a moment.
Cat(z4)
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/27/2010 7:28 AM (GMT -7)   
Hi Cat...wish we had 9 lives!!! and all of them pain free...and how to resolve not doing what we used to??? this is the most difficult for me...I just want to go out and walk...besides my professional life, I was a dancer, pilot and volleyball player and today, well, I live moving very slowly, room to room...I hope to find a way to make peace with this, but so far, I am still stuck...hope you find resolution as well and thanks for the kind words...big hugs, J

It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 2/27/2010 7:42 AM (GMT -7)   
Yes thats the key whitestone making peace with the present moment ,I;m using a walker now to get around as you say slowly room to room and its hard to accept ,my salvation is feeling useful to myself and all others I can .I trained as an Asst Vet online and found great folks who allow me to help out and and participate at their facility , its privatley owned . I am never so happy to clean cages and kennels , help take a blood sample , its trancending .With the computer its possible to volounteer online from your home , and any hobby is great .Try to make a time of the day where you do something for you , to enjoy yourself .It helps I think, Good luck .
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines - Oxycontin , percocet , Oxycondone , Celelbrex ,Avalox , lasix .


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/27/2010 8:27 AM (GMT -7)   
Hi Mike and thanks...I still get out to work as I have a car service take me both ways...the olympics I go through getting in and out of the car sets off my whole day, but I hold back the tears and get through...so tired of getting through...I am used to living a life where I change what I do not like...I think the lack of control hurts as much as the compromises...I hate everything about this and want to stop crying when I am alone...when I am out or with ppl, I do not attend to it as much...thanks again, and yes, being with animals can surely make things better...I have a huge gray tabby (Kitten) who I wish had thumbs and could get a job smilewinkgrin ...big hugs, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 2/27/2010 9:00 AM (GMT -7)   
Yep, Mikel's right, making peace...I've really never thought of it like that. Makes me feel a little, well, duh! That's wisdom. So J, what kind of dance? I would have loved to have learned, but now I do the same dance as most of us, the "shuffle and slide"! Gosh you were really busy! Really had a lot going on! I can see how you feel the loss. You were a pilot too?? Wow, I've known plenty of pilots for some reason in my lifetime and every single one of them were obsessed with flying! I hear it's like that; once you start flying, you're hooked. My hubby is that way with golf! In fact we have a dog named Driver Tee and one named Mulligan! LOL! I'm obssesed with art in all forms. I just love it and not to be able to do most of the mediums that I used to do is really what depresses me almost the most. Keep in touch and just know that we are people with love for each other even though most of us have never met! That's powerful isn't it?
Cat(z4)
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/27/2010 12:10 PM (GMT -7)   
Hi Whitestone and I too want to welcome you to Healing Well's chronic pain forum. I am very glad that you found us and I hope you will decide to hang out with us. This has got to be one of the most compassionate groups of people I think a person could ever ask for. I have never been one for joining forums let alone post on one, but when I found this place I knew it was home for me. HW became my safety net in so many ways. Suddenly, I was not alone anymore and I didn't have to hide my feelings when I came here, that is why I call it my safety net.
 
Wow, what a story you have to tell. Like everyone else here at the forum we all do have a story to tell. It can be pretty incredible some of the things I hear of what people have gone through or are still going through. We really do learn a lot from each other experiences. Life sure can throw some wicked curves at us for whatever reason.
 
Someone was speaking of making peace with ourselves and that is very true. It took me a long time, along with some professional help to get started on that road. Many times we have so many losses to deal with, jobs, self worth, identity, that is just a tip off the iceberg, it feels sometimes like our world has been taken from us.  We actually do grieve for each and every loss that we feel we have sustained. I found out that all the feelings and thoughts I had were part of a normal process that I never knew existed. For me making peace with things is an every day occurrence because of the impact CP and illness has made on my life. I felt like it ruined my life and and it did. Sickness and illness took that life from me.  Now, I have a new life that I am rebuilding and it is a very hard thing to do. Do I like it, no, I am constantly having to compromise, it is almost like I have to barter for every thing I do and I don't like that. I want my old life back and the old me back, but there again comes the grieving process. But, I am determined somehow to just keep on rebuilding one day at a time. Where I managed to be up to when I became ill was not built in one day, it was one throughout a lifetime, this new life will be built the same way.
 
I do hope that somehow you can find some sort of pain relief that will give you some quality life. That is one thing we are all entitled to and should not have to beg for either. Keep us posted on how you are coming along and take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/27/2010 12:42 PM (GMT -7)   
Hi StrayDog...thank you so much for sharing your wisdom...Gosh, I feel like a fraud sometimes...I am a therapist who always encourages ppl to make the most of what they have...and I come home and cry about what I lost...I never thought my life would be reduced to wanting such few things, I want to walk...used to run for miles, and now getting to the living room is my jog for the day...I used to throw such beautiful dinner parties, and now I eat sandwiches (I am a wonderful cook) because that is how long I can stand in the kitchen (have tried a lot, even have a new stove)...20 min to get dressed and if I have to wear boots, I might as well start dressing for Monday...looking forward to laughing again in a sustained, being myself way...I miss me...thanks again, big hugs, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/28/2010 2:02 AM (GMT -7)   
WhiteStone one thing I have noticed is that people who pretty much spends a lot of time helping other people, really find it difficult to help themselves when put in certain situations. I have always been a helper but have a difficult time helping me.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/28/2010 6:18 AM (GMT -7)   
Hi again Straydog...I think we help others for selfish and selfless reasons...and yes, it is so difficult for me to ask for or take help...something I am working on...thanks for your insights and wishing you a comfortable day...big hugs, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/28/2010 1:31 PM (GMT -7)   
hi there. just wanted to welcome you to the forum. sounds like you had a bad accident. that must have been hard and I bet it still is. WOW.

you ar enot alone. I also "pretend" I am doing ok in front of people and behind closed doors cry and feel sorry for myself. I know things could always be worse but sometimes I wonder.

you still work?> that is amazing. how do you get throught the day? I can imagine having to work that must be a huge burden.

thanks for coming here and sharing your story. its nice to "meet" you.

hugs,
melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/28/2010 3:11 PM (GMT -7)   
Dear WhiteStone,

Welcome!! I'm so glad you found us! I'm fairly new to this particular forum but it is rapidly becoming my main "comfort zone"....everyone is so caring and the collective knowledge pool here is absolutely amazing!

I'm sorry to hear what you have been through; your accident sounds horrific and losing so many wonderful parts of your life (dancing, flying, cooking and entertaining, etc) must be incredibly difficult to deal with.

And yet in the midst of your loss and your pain, you work as a therapist helping others to deal with their losses and pain! What a wonderful compassionate person you are!

I still work as well, although it is becoming more and more difficult. Fortunately they let me work from home much of the time. And I too put on a brave face to the world; I learned pretty quickly to not tell others about the pain I'm in or the symptoms I experience....it usually does more harm than good to share these things. I can't even really talk to my husband about it....not really. The only people who understand are here on this site.

I am (was) a scientist and a teacher. I am still a scientist but have now given up teaching.....brain fog, cognitive issues, and physical pain have made it impossible for me to continue teaching. I may have to stop work altogether soon.

The mourning process for the loss of these big chunks of our identities seems endless....we all know what you are going through and we mourn with you. I pray that we all come to a place of peace and acceptance of our lives as they are now, and that we learn to find joy in new aspects of our existence.

Again, welcome....I'm so glad you're here with us now!
(((((hugs)))))
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L4 and L5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/28/2010 3:46 PM (GMT -7)   
Hi Whitestone...

Welcome to the board. I'm sorry for all that you've been through! But I'm glad you found your way here....

Looking forward to getting to know you better... Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation

Meds: MS Contin; Dilaudid; Actiq; Soma ; Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor(depression)/Ativan(anxiety); Synthroid; Prednisone; and on the list goes...


WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 2/28/2010 8:42 PM (GMT -7)   
Thank you all for your warm welcomes and understanding...really need it now as I am so worried about telling ppl how I am doing..a month ago, one of my best friends showed up at 10AM, banging on my back window, so fearful I was not OK...I was sleeping...I feel like a burden sometimes because I have nothing nice to say, so I say I am OK and then cry...one of my other best friends who I have known since I was 3 is a MD so it is hard to fool her...I find I am isolating from her recently...my therapist of 17yrs stopped practicing because his wife died a yr ago and I have yet to go to see someone else...telling my story again (severe childhood abuse) feels like living it again...and the weather keeps me from getting to appointments (not a great way to start a new relationship)...so I am waiting a few weeks and then I will try to get back into treatment...about being a pilot...I used to co-own a prop plane, and yes, it did become a passion...and getting to work...I grit and bare it and when I get there, I can forget about my pain for a few hrs...or I close the door and cry...and yes, I want my old life back...I think we romanticize our former selves, but truly I miss so much...thanks again for being a community where I can be honest...it feels freeing...big hugs and much comfort, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)



PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/28/2010 9:39 PM (GMT -7)   
WhiteStone,
I don't think I've welcomed you to the forum yet, but I have been following this thread with interest. You and others have raised so many profound issues in this thread - about accepting change, the losses and the grieving, and all those things entail. Making peace. I wonder if we ever get there 100%. The is a concept called Radical Acceptance developed by a therapist that is part of a method called Dialectical Behavioral Therapy (DBT). Radical Acceptance stems from application of mindfulness and Buddhist teachings, and judging from your signature quotes (which I love) you probably know something about this. We're in similar professions - although I only recently have had to stop working, and I'm nowhere near making peace with that loss. It's far more than the loss of income (although that's a major stressor, to say the least).

So welcome to the CP forum - a great support place, as you've already gathered. A place where we truly can let our hair down and feel understood.

PaLady

WhiteStone
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 3/1/2010 6:12 AM (GMT -7)   
Hi PALady...it is so much easier to accept one's imperfections when they do not interfere so much in one's life...yes, I am a Jew-Bu...use both spritual backgrounds to form a blend that truely  has made living so much more pleasant...have a great life that I wish I could live...grieving losses is such a difficult state to be in...I have just begun (after 6 years) to begin to walk this journey...I will not give up hope, and am fairly aggressive at seeking advise re regaining some physical strength, but am confronted each moment that I am not who I was...the ultimate question is how to accept that which I do not want...will continue to work on this...thanks for the suggestion and will look into it...hoping you too find peace with what has been put on your plate...big hugs and wishing you much comfort, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)
 
Kindness in words creates confidence.
Kindness in thinking creates profoundness.
Kindness in giving creates love. (Laotzu)


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