~Struggle

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

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.

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

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

   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

   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

     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