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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/6/2009 9:49 AM (GMT -7)   
Greetings HW Family,

I am sorry I have been away for a while. It has become increasing diffacult to make my hands work and my leggs w/ the spasims in feet (my toes will point towards heaven for no reason and goodness it is hard to hold them to the floor until it passes)..... Just do not feel so hott. I am very sorry for not "checking in" more often. *warmest huggs*

I have been over loaded yet again with doctors appointments while my fever rages on. It was mentioned in passing during one of these various doctors appointments "Ah, yes, possible Hypoparathyroidism..." spine,hearing,eyes,memory, motor "unreleated condition." Kidney function need "further analysis" . I no longer care to hear "possible" or even pretend to follow their "lead" any longer. Many times they have "thought" they were on the right track and many times have been proven wrong. But my heart is tired and my soul feels ever so overwhelmed. Dispair seems but a few stepps behind me. Though I dont want to "dump" on all of you, if you wouldnt mind, Id like to complain for a moment.....

I want my body. More than anything. I waited so long for a family of my own. I want so much to show them the depths of my love and devotion. Why must I struggle to survive, to love? How did it come to this? In just a few years time? Is this what "madness" is?

Must I loose my eyes, my ear, my mind, my bones, muscle, leggs, hands, feet, spine, teeth, hips? I want so much to just Be.

When, and how, do I tell those friends that I hold oh so dear what is going on... when even, I, do not know? Let alone my doctors?

I see my doctors frustraition. I am sorry I am the cause of their turmoil. I need them to be strong! I need them to open their minds! I need their strength. I need their knowladge. I know they cannot bear to see me cry... at times, I must cry. At times, I will crumble. I will be frightened. I know it is hard to see and witness this. Just as much as it is to experience "it". I need my doctors, husband and friends to be "life" and "hope" with me. Because, at times, I cannot do it alone.

Disease specialist, spine specialist, endocrine specialist, optical & oral surgeons, pain psychologist, general doctor...... And now the possibility of ANOTHER new one? How can they not "know with certianty"?

I have done ALL that has been asked of me to the very best of my ability! Dare anyone to challenge me and say differant! I have asked but one in return. "Please, make the damage stop here. Please. No more." I have not asked the impossible. I have not asked that "it" go away or for my body to go "back" to where it was. I have only asked for it to "stop".

In Feburary of 2010 it will have been 2yrs. How did I loose so much in just 2yrs time?? When I first came to them for help, my hipps, low back, sleep cycle, and hearing were a mild / moderate problem. How did it come to this?

I am very sorry for all the rethorical (sp) questions and seemingly mindless ramblings. I fear I havnt much more time or money to invest in the seemingly endless "possibilities". I simply cannot afford to loose more of "me". I know that most of this damage is permanant. If not stopped soon...... I fear what more will be lost by year 3. I must research alternatives this winter. It will require alot of work to gather all documents related that has been done and tested these last 2years. It must be done. I have lost so much.

Thank you so much for being here. Thank you very very much for allowing me to... exhaust my thoughts on all of you.

*warm huggs*
dani

TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/6/2009 9:51 AM (GMT -7)   
cry wish I could figure out how to make my text green shakehead


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Post Edited (Dani Henson) : 10/9/2009 9:23:40 AM (GMT-6)


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/6/2009 12:05 PM (GMT -7)   
Im at a total loss for words here, but wanted to post something for you. I truly hope you find a solution to your problems. I feel lucky that I only have DDD to worry about. Hang in there, for what ever the words are worth to you, as Im sure you hear this alot. I feel bad for you....and again I hope you can find some comfort here. I am humbled by what you are going through.
Michael


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 10/6/2009 12:10 PM (GMT -7)   
Dani, your post about broke my heart. Wish there was something I could say or do to make it all better. The human body is a mysterious thing and I'm sure the doctors would like to find the answers too. You cry all you want but don't forget to give your children and husband all the love you can muster cause I'm sure they are hurting right along with you. You've been an inspiration with your concern for others and your medical jokes were hilarious, I forwarded quite a few on to others. I'll be thinking of you!!!
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/6/2009 12:11 PM (GMT -7)   
Dani,
I don't have time right at this moment to write the response I want to - but I do want to say your post touched me deeply. Deeply. There was no rambling. No complaining. Just pure, honest thoughts, many of which I've had myself. I thank you for sharing them, for putting into words what many of us feel, but for you it is different because things keep progressing so rapidly. I will hope with everything in my heart tnat answers can be found for you, and for others like Skeye who have been losing so much at such a young age.

For now, I want to offer you many, many hugs. A shoulder of support. Or to cry on. And might I suggest you copy this post and take it to all your doctor's appointments with you? Maybe, maybe some of them would at least "get" how this feels from the inside out for you, and also that you do understand their frustration. And that you need them to be in this with all their heart AND mind.

((((((((((((((Dani))))))))))))))

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 10/6/2009 3:16 PM (GMT -7)   
Dani
I have no words that can adequately tell you how your post affected me! My heart goes out to you, I know well the feeling of uncertainty and "not knowing" but you are so young and to be losing so much and not even knowing why or how! And yet with your post you are constantly stepping forward and putting others needs before your own! I really do admire you for that trait, I guess that is why I like this forum so much there are so many people that are like you, (this site seems to brings out the best in people or attract the best people!) Anyway I know there is nothing I can say that can help make your condition "stop" or "go away" ! But Please know that I am always here ( as we all are) for you, to share your burden as we can,...... and hopefully..... lighten your heart when you feel weighted down! I do wish there was more that I could do........ I send you my prayers,........ I send you my hopes,...... and I send you my wishs,..... that you find an answer, a diagnosees and a treatment or a cure!

May Gods Peace be always with You!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/6/2009 6:11 PM (GMT -7)   
Oh Dani, you are such a warm, considerate, humourous, wonderful, loving human being. It just isn't fair that all this has been dumped on you and you are so stoically managing to cope with it all. It must be terrifying to have your body deteriorate at such a rapid pace.
I just can't imagine how scary it must be for you, please rant all you need. We love you on this site. I just know all of us will be equally as upset reading your post.
If doctors can't cure you you often feel like you're sidelined. Or passed down the line! Its very hard to find someone to take overall responsibility and be caring with it. I hope yourdoctors listen to you? Do you feel they have any empathy with your emotional state?
Please keep posting and giving us updates if you're able to.
Heartfelt best wishes and super cyber HUGS, golitho
 

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/6/2009 6:13 PM (GMT -7)   
Oh, Dani!! (((((((((((((Dani)))))))))))). I really wish I could do something to help you, or at the very least give you an answer! We know so much, but we know so little. It just doesn't seem fair when you are one of the anomalies -- especially someone like you, who has such a big heart & always seems to think of others first. I really hope things improve for you soon! You're in my thoughts & prayers!

hugs,
Skeye

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 10/6/2009 8:58 PM (GMT -7)   
Dani, I to have little to add that would make the oain and uncertainty go away. We all know that when we start this journey that we hope for a short and quick cure that will restore and replace the things that are not working correctly. We don't know why and often before we get any answers, we only are faced with new questions and they don't seem to quit. There is still a dream that we will wake up or exit a doctor's office and have all the answers and hope being restored. Normally it is just trying to interpret what the lastest data was and as you state, the possibles.
 
I too want to congradulate you as you did not rant and rave but kept rather focused. Most of all. I felt that your focus was not on you but on those around you that you take care of and who look to you for strength. They don't need you to be perfect or on top of it all the time. Just knowing that you are still there around them, even with the questions and concerns, they will gladly take what they see. That might not make it feel all better but the love is there and that will make up for alot. Warmest blessings and huggs to you.

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 10/6/2009 9:50 PM (GMT -7)   

Oh Dani,

My heart, thoughts and prayers are with you!  You are an inspiration to all of us here and I know to your wonderful family as well.  Your love, compassion, empathy and great sense of humor shines through in every post you have written.

I can assure you that your Husband and little Bumblebees feel very loved and lucky to have you for their wife and MOMMY!

I'm sending Blessings to you and soft gentle hugs!

((((((((((((((((((((((((((Dani)))))))))))))))))))))))))))

XXOO
Patti


pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/7/2009 7:12 AM (GMT -7)   
I have had those same thoughts, and i only have back and arthritis problems. I cant imagine the horror and loneliness you are going through. I wish nothing but the best outcome, hang in there and know that there are others out there that love you. ((((Dani))))

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/7/2009 11:43 AM (GMT -7)   
Dani,
Your such a wonder person and never ever let them tell you otherwise...
I so wish I knew what to says, how to make you better..as I would...
Lots and lots of soft hugz and keep us posted, we care...
Prayers and soft hugz
((((((((((((((((((((((((Dani))))))))))))))))))))))))))))))))))))))))
missed you...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 10/7/2009 12:49 PM (GMT -7)   

Big hugs to you Dani. I can feel for you as I have many of those same feelings. Many of us do and you are not alone. My heart just goes out to you. And it is good that you are sharing those feeling and getting them off your chest. I wish we all had someone we could turn to in rough times that is going thru the same thing.

My daily headaches are getting the best of me. It is there every minute of every day, it never goes away and it's been like that over a yeear and mostly on in the last ten years. Nothing helps it. No medication even narcotics touches it. No one knows what to do what it is nothing!!! I feel like I am going crazy, the pain is so bad. I can't do much but lay in bed with ice on my head. I try to go for short walks outside but that takes all my energy and a few little things in the house. When will I get my life back. I just can't imagine that I must live the rest of my life like this. Sometimes I think if money was not an option I would go to the big pain and headaches center and someone would be albe to figure this out! But I will just keep praying that my day will come soon, even just a little change.

 

Suzane


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/7/2009 6:33 PM (GMT -7)   
Hi Dani:

I am so sorry for the situation you find yourself in. The mental anguish comes across so clearly in your words. I have been in very similar circumstances, being so ill, hospitalized for weeks at a time, 11 times in one year, and every time I came out with a different diagnosis. Going to and through doctor after doctor, every specialty anyone suggested - all with no results. And then a doctor that was new to our area was recommended to me, and within a couple of days, she figured it out. I just don't want you to lose hope. I believe it will happen!

Please don't apologize for the need to vent what is on your mind and in your heart. You have been such a rock to so many of us, I know you have been for me, and I want to be there for you! You are such an inspiration to us for so many reasons.

Your family knows how much you love them, they can see it in how hard you are fighting to get answers and to get well. My thoughts and prayers will be with you.

Lorie

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/7/2009 9:04 PM (GMT -7)   
Hi Dani,

How are you doing today, sweetie? Your post really hit home & I'm worried about you! We all are! I really wish there was something that I could do to lift your spirits, or just be able give you a big gentle hug! I know the emotional struggle you are dealing with all too well. I hope your little bumblebees are able to help take your mind off things even for a little while!

Just one though -- do you keep a journal? I've never been one for journal writing, but throughout this process I've found that keeping an journal of sorts is really helpful. I don't write in it often, only when I need to. Sometimes I'll go months without writing in it. But when I'm really upset, depressed, angry, anything, I pour my emotions out onto the pages. Just writing down what I feel, what I think, what I'm worried or scared about, etc. I sometimes it helps me to cry or grieve when I need to (in general I have a very hard time getting in touch with my emotions & expressing my emotions outwardly). But just getting it out of my head and onto the paper helps me. It doesn't change my situation at all, but something about it just helps me to cope with the situation little better. Maybe you already do this, or have another outlet, but I just thought I'd share this with you. Anything I can do to help!
((((((((((Dani)))))))))))). Keep looking up. You are such a strong, compassionate, truly beautiful person. Don't ever let that change!

Many hugs,
Skeye

Post Edited (skeye) : 10/7/2009 10:07:18 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 10/7/2009 9:26 PM (GMT -7)   
Hi Dani, I am so sorry that you are having such a terrible time right now. You have to remember honey this is not something caused by something you have done so please do not blame yourself. You know it is just crazy at how suddenly our bodies just seem to turn on themselves. I honestly do not know how you have kept such an upbeat attitude for as long as you have. But, you just keep hanging in there the best you can.

I do not remember if this question has already been asked but here goes. Have you thought about perhaps going to one of the Mayo Clinics that is close to where you live? Alot of people go there when many times their drs are not able to come up with answers and they are able to get help at the Mayo. A friend of mine has an appt to go, she has cancer but they do not know where it is in her body. She has done every kind of test known to mankind and the drs are stumped. You would think with the tools available today they could locate her cancer. They suggested that she go to the Mayo. She has already been there once before for a problem that no one could help with.

Keep us posted when you feel like popping on for a minute just to let us know how you are doing. Hugs,
Straydog/Susie
Moderator Chronic Pain
 
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 & decreased circulation in both legs. 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 16 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/9/2009 7:54 PM (GMT -7)   
 
   Dear Michael,
 
      Thank you ever so much for responding. Your replay warmed my heart. Though I do not want to "make light" of my problems... There are things, many many things that only someone else with chronic pain could possibly understand or comprehend. What I mean to say, is when it comes to chronic pain, we are all equal. You being here, and understanding, is a testament to that. I am very greatful to have this oppertunity to know you *warm huggs*
 
 
   Dear Jag,
 
     You remind me not to loose sight of myself. Thank you so much *huggs* It is hard on my mind and my soul. But, one day.. Maybe, if not in my life time, then perhaps the life time of my children... The medical comminuty will advance "whole body diagnostic" tools that are cheaper, and more advanced than those of today. Maybe it is just a dream, but it is a nice dream that I cannot help but wish for... I see ive yet again gotten off track!! I wanted to tell you thank you. Your support means so much to me, mentally, emotionally, socially. *warm huggs*
 
 
   Dear PA Lady,
 
     Thank you so much! I apprecite your reply and more so.. Your understanding when I felt oh so confused. I still am, confused by it all, but putting it out, made it easier, feel lighter somehow. *huggs* I have told my doctors how I feel. I can see their turmoil. I have hugged and thanked each one over the last 4 weeks. After these conversations I was told some of the most kindest things. I had to breathe deeply to not cry too much.... "Please, dont give up on us. We are trying so hard." "I will do all that I can. I wish I could do more." "I know it seems to be going slow, but we must be careful. You have been through so much" "I dont care if you need me all day, the others can wait.".. these are from the heart. I truly feel that. I know they are trying hard... I just get so frightened sometimes. Gosh, I am so glad I met you. Thank you so much.
 
      I did, however, copy this post. And emailed it to my friends. *deep breaths* Noone has replied or said anything yet. I hope I havnt scared them. Last they knew I had pain in my low back and needed to see a specialist. It wasnt that I was intentionally... wait. Yes, I was. I did do it intentionally. I didnt want to frighten anyone. I didnt want anyone to worry about something that even I, did  not understand. I hope, sending out this post, will help them to understand. I hope they arnt upset with me, but if they are, then I understand. I seee this reply is getting rather long so I should stopp here. But *huggs* Thank you for your shoulder and ear. It means so much to me. *warm huggs*
 
 
   Dear White Beard,
 
     I hope you are some what relaxed by the time you read this *huggs* You have been through so much, yet here you are!! Offering support, comfort and prayers. From the bottom of my heart, I thank you. Your post made me feel a bit more strength than I think I posses. *huggs* You are right. Comming here is like.. going to a garden full of all the things and  people and hearts that you always knew were there, waiting.. *warm huggs* Thank you so much for your encouragement. I will try my hardest to stand tall! *soft huggs*
 
 
   Dear Golitho,
 
     Good evening *soft huggs* I do feel scared latly. I do feel frightened, but, I come here... and there you are. Sometimes it feels like you are in the room with me. Cheering me on and giving me the courge back that, at times, I feel ive lost some how. Thank you. *soft huggs*
 
     Yes, my doctors are all working together, as hard as they can. Yes they are all very supportive, and at time, a little too protective. Like my husband. Sometimes, I dont .. How do I say? I feel like I dont want to burdon their already heavy hearts. For surly they must feel as sad as I do at times? Silly, perhaps. I know theya re trying their hardest, fighting with the insurace carriers, hospital service staff, working around our limited financial means... I just feel.. that I dont want to "add to the load"? I probably shouldnt feel this way. I am sure in the fullness of time this type of thinking will do more harm than good. I will have to try harder and remember that they care too.
 
     Thank you so much for listening and being here. It means so much to me.
 
 
   Dear Skeye,
 
     I hope you are having a nice evening. I felt so silly earlier, I had somehow managed to mixx up you and skrape! I am so sorry! *huggs*
   
     I did want to say thank you though. Your reply warmed my heart to no end. I did want to let you know thou, that my hands are back down to moderate ache and stiffness, thank goodness. And even better I havnt had to write with my left hand for a few days now. Small blessing, but I will take them as they come! Thank you so much for your support, I truly appreciate it alot.*warm huggs*
 
  
   Dear Father John,
 
    Good evening *huggs* I cannot put into words how much your reply effected me. It is so easy, it seems, to forget how those I love feel. How those I love view me. Thank you so much for guiding me back. You are right, I don't have to be perfect. I dont have to do it all. I just have to end each day knowing I tried my hardest. That I loved the best I could. That the next day still brings more opportunities. Thank you so much for your gentle support and understanding. You touched me deeply and I cant thank you enough. *warm huggs*
 
   Dear Patti,
 
     Oh such wonderful compliments, I do not think my head will fit through the door! *huggs* I apprecite your kindness and understanding so much! Thank you! your constant support means so much to me, as I am sure all of us. It means so much to me.
 
 
   Dear Pixie,
 
     You have made my heart smile. Thank you. I am ever so glad you came to Healing Well Community. You have a positive nature that seems to shine through all your posts! Thank you so much for your support.
 
 
   Dear Chart,
 
   Missed you too! *warm huggs* Thank you for your prayers! Just being here means the world to me. Thank you *warm huggs*
 
 
   Dear Suzane,
 
     Thank you so much for your heart felt relpy. I think that is what I like the most about HW Family. I am not alone. When I am scared or frightened or feel heavy... I come here. And here I am met with the biggest hearts, endless compassion and understanding. It is such a comfort to me. My only regret is that I cannot huggs my HW Family in person.
 
     I am so sorry to hear of your constant headaches. I firmly believe neck, head and feet have got to be the WORST places to hurt. There is so little one can do to "rest" those areas as they are in constant use. I too dream of more accessable, affordable health care. If not in our life time, then perhaps, in my childrens life time. it is a dream I simply refuse to let go. Surly you too, have these dreams. I am so sorry for all you have to endure, but I cannot express enough how much your support means to me. Thank you so much for being here. *huggs*
 
 
   Dear Lori,
 
     Good evening*warm huggs* How are you doing today? I am doing better. The inside me seems to have calmed. I will admitt putting down my qestions, worries, and thoughts seemed to help tremendously. As did finally "comming clean" to my friends about how bad things have gotten this last year. Though I have yet to hear from anyone of them after my "admission?" I feel so much lighter.
 
     Thank you for your unwavering support. It makes my heart smile and helps so much ease my mind. Sometimes, things get so confusing.. and here you are. Thank you *warmest huggs*
 
 
   Dear Skeye,
 
      Thank you so much for checking in with me. It means so much to me. *huggs*  Yes, I do keep a journal. But, since my Bumblebees were born... It seems I fill page after page about their struggles, milesstones and all the cute little things they do each day. Then I find myself 4 pages later with a cramped hand wondering why I didnt write down any of the things that were bothering my mind the most? I should try to perhaps get one just for me. Hopefully, I will remember when I got to get crimp covers at the hobbie store. Thank you for the ideas, I think it would help tremendously to write down just "my" stuff. *warmest huggs*
 
 
    Dear Susie,
 
     Thank you so much for yoru warm reply. You sound like 3 of my doctors. They remind me of this constantly. "Its not your fault. Its going to be okay." "it isnt anything you have done wrong, but I do need to speak with the others." "Do not feel bad for telling me how you feel. It isnt to be ashamed of." ..... I dont know why I loose sight when I get frightened. Grr! Sometimes, I wish I were stronger.
 
     Mayo clinic! This came up recently. They have asked me how I would feel about it. If I would please go home and learn more about what they do and are for. That they would like to go inot further discussion reguarding this.
 
     What I know, so far (things are so busy around here I need to spend more time on this) is that the closest one is in Arizona. It would reqiure me to check myself in for a few days and that insurance may or may not cover it. But, when it comes to my insurance, they always so "no" initally about everything this last year? But somehow between HR, my doctors and husband they always end up paying out at 90% when all is said and done. I still have alot to "learn" and "reasearch" on the insurance end. But!! Last night my husband had a meeting at work, and possibly *cross finger* our insurance could change soon. Also would probably require me to save up for a while to pay our portion. Were not weell off, but I make and do everything by hand. Would also require proper timing due to my husbands work / time off and the girls school. So there is still alot to look into... but, well, ive some ideas about adding in more income I hope, come the new year. Its a alot to swallow, ill admitt, but it is something to work towards if their latest "possibilities" prove wrong and they need more "help" in testing my body head to toe. Gosh, getting out all my thoughts on this doesnt make it feel so over whelming. *deep breaths*
 
     Thank you so much for your constant support and knowladge. I truly apprecite it alot.
 
*warmest huggs*
       dani
 
  
 
  


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Post Edited (Dani Henson) : 10/9/2009 9:08:22 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 10/9/2009 8:14 PM (GMT -7)   
dani my friend with the cancer thing going on-went there to arizona said it was awesome what they did. they found her problem too. this is why she is going back for the cancer. her drs here are all for it too. another lady i know went to one of the others same thing found the problem. i was headed to one had my gi not been able to get my crohns half way under control. several people on the crohns forum had been to the mayo they worked with their drs back home, thats the beauty of that place, they work with the drs at home.
Straydog/Susie
Moderator Chronic Pain
 
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 & decreased circulation in both legs. 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 16 different daily medications. Intrathecal pain pump implanted June 05.


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/9/2009 8:55 PM (GMT -7)   
Hi Dani:

I just wanted to say Hi. I hope you are feeling a little better today!

I was very happy to see your post as I've been very worried about you!

You will continue to be in my thoughts and prayers.

Lorie

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/9/2009 9:43 PM (GMT -7)   
Love and warmest hugs to you my sweet friend! You are like a child in my heart and like any mother it's painful to see your 'children' in pain. You didn't nor have ever complained or whined on the forum...just stated the facts with such command of our language.

I know you are sick of doctors, and especially new ones. It sounds like you have been with your medical team for a while. Have you considered going to a teaching hospital/university? A fresh look and doctors who are on the cutting edge and are not afraid to put their necks on the line...it's worth a try. I don't know where you live in NM, but I would think it's worth the drive to possibly find someone who can solve your mystery and get your life back in some order. I did fine the UNM health centers...here's a link for you...

http://hospitals.unm.edu/outpt/

Please feel free to email me any time you'd like..
Warmest hugs,
Chutzie
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/11/2009 6:52 PM (GMT -7)   
 
 
   Dear Chutz,
 
     Good evening *warm huggs* Thank you so much for reply. I was going to post this morning but I ran out of time! I hope you are having a great evening so far, more so that you are taking a much needed break.
 
     Thank you for suggesting BCMC (UNM). I have a dear friend of 8yrs that is head of one of the departments and also teaches med students. She asked me on multiple occasions if I am ready for her help, and has slipped me her friends numbers on napkins when I see her. I love her very much, and I dont want her to worry or to know how bad it has gotten. But, recenlty I have begun being open and honest, as best I can, to those around me (only a few days now...).
 
     When I last saw her, Friday before last, she again mentioned to my husband she would like to help. That is when I decided that I need to track down all my tests, etc. My doctors and specialists are all through Presbyterian, private hospital chain. So I need spend time going to each branch and signing the needed forms to recieve my records.  But, this route I am not ready to commit to until I can gather my records, and ask real questions about the help and resources she is trying (for a year now) to offer me. Would I need to stop seeing my doctors  specialists (im no so comfortable with that) ? Can they do a head to toe diagnosic? How much it will cost?  See, though we have a teaching hospital here... in NM is it illegal to deny anyone treatment. It is a very poor state, and our only teaching hospital is sorly overrun with those in need. So, if you can pay, they ask that you do so. But!! Have sliding scale fees on everything depending on income / family size. It is alot to think about. I think the most pressing reason is that I dont want her to know how much pain I am in, or how bad it has gotten. We have been through so much together , I love her so much, I dont want her to worry. Gosh, I really have got to stop thinking like this!!!
 
     Thanks for letting me pour out all my worries on you. Thank you so much for all your support, suggestions and understanding. It means a great deal to me.
 
   *warm huggs*
         dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/11/2009 7:22 PM (GMT -7)   
Hi Dani:

I don't mean to butt in on your post with Chutz, but I too am very worried about you, and I just wanted to encourage you to listen to Chutz, take the offer of help your friend is extending to you. I totally understand your loyalty to your doctors, I am going through a similar situation with my PM of 12 years. It took a real kick in the pants from a dear friend to get me to realize that the level of care I need is above what he is capable of.

I wound up going to a seminar on back pain that a local doctors group was giving not really expecting to learn anything new, but I figured it couldn't hurt. After sitting through the whole seminar and thinking it was a complete waste of time, my husband spoke up and told them a little bit about me and one of the doctors said that he worked for 2 years at one of the best cancer hospitals in the country in N.Y.C., and he is quite sure that if I meet their insurance requirements, that they would "welcome me with open arms" and really try to get my pain under control.

I told him that I was not willing to cut ties with my current PM until I was sure that I had someone else that I was comfortable with and who I believed was going to help me. He was not put off at all. He was very honest and told me that he was not the right doctor for me, but that he would be more than willing to use his connections and said that he would be happy to see me on a "consult" basis and right up his recommendations for me to present to my present PM.

So, what I guess I'm trying to say is, maybe as Chutz said, fresh eyes might help, and maybe the new doctors and the old doctors will be willing to work together.

Hugs,

Lorie

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 10/12/2009 10:27 AM (GMT -7)   
Dani, your friend that is trying to help you, would most likely be very hurt by the fact you have not been totally honest with her about your condition. Friends help friends honey, please do take her extended hand. Most teaching hospitals will work with an existing dr and give their recommendations. That gets alot of the overload off of them, you need a fresh set eyes.
Many times we have to get several opinions, its just the way the medical field is today and some of your drs have hinted to you to consider doing this. Many times when drs tell you to get a 2nd opinion, its their way of saying they don't know what to do for the patient.

You owe it to your family and yourself to consider this. We are all terribly worried and concerned for you.
Straydog/Susie
Moderator Chronic Pain
 
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 & decreased circulation in both legs. 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 16 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/12/2009 12:54 PM (GMT -7)   
Dani,
I have to say "ditto" to what has been said about taking advantage of your friend's offer. You know, those offers don't come that often, especially from someone who's both a friend AND has the capacity/connections to help you get some needed medical advice. I agree with Susie that your friend would probably be hurt by knowing you're keeping things hidden. I think she's telling you by her behavior she wants you to share with her. Please do!

And yes, Susie's right that you can just go for a comprehensive evaluation and you'll get not only a fresh set (or sets) of eyes, but maybe the latest research and technology. But most often when you have to travel for those kinds of things (be they just evaluations or a major procedure like surgery) you're eventually discharged back to your regular doctors. They should all be able to work together.

Please, take advantage of this. Your situation is deteriorating and maybe there's something out there that can slow, stop or even reverse what's happening and if so you, want to find it ASAP!

Hugs,

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/14/2009 8:56 AM (GMT -7)   
 
     Dear HW Family,
 
       I was going to post to each of you individually, but Ive got a slight case of lazyness today. But, really it is a post to all of you. Before I get too far in, I want you all to know that I appreciate your support and understanding so much. And thank you for the gentle pushes towards the decisions weve made. It really means alot. From the bottom of my heart I thank you all.
 
     So, here is the game plann. (hope this works) My husband and I got to talking (more like few days of talking) about things... Next week he has 4 days off. I will travel about the city  and will sign all the needed papers to get my records. After that, hopefully, alll I will need to do is "pick-up" when each set is ready.
 
      2 weeks from now I have "findings" appointments with my specialists (except one, he is next ..monday). At that time, if I am not given clear answers, I will prepare a package with a cover letter for Theresa. I hope I have the courge to give it to her in person, I know she wanted lastest batch of pictures anyway. And will ask what it would take /  if it is possible to have a head to toe diagnostic to work in conjunction with my current doctors (or at the very least a 2nd opinion on what has been done thus far)... and how much it will "cost". The save up said amount.
 
     *If* this option doesnt pan out, then I will begin planning for the mayo clinic in arizona. Either option would require me to save up funds / ALOT of family planning... but, I have a feeling that UNM would cost considerably less.  Reguardless I have ideas for adding a little bit of income that I have been working very hard on. I know either of these options will take a few months to come to "full bloom" but, it is time. Long since. Time to work towards these goals.
 
      So.. plan A. My specialists have answers. Plan B. UNM diagnostic / 2nd opinion.  Plan C. work towards mayo clinic~ diagnostic / 2nd opinion. <~~that one will take a loong time, but if it is what ive got left.. then its what Ive got to do.
 
     Also, just wanted to say I apprecite all of you so much. Really means alot to me, all of your support.
 
 *huggs*
     dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

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