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  • #31
    Kara, I'm at a loss to come up with any solutions. I am so sorry that you are suffering so. Donna suggested that you step back - and you said that it's difficult to see things when you are in the midst of them.
    One of the things I do, is to breathe very deeply several times and concentrate on that. I try to find some soothing music to go with it. I've had times that I don't know where to turn - not so much with my own pain, but with situations that are extremely unsettling (like the FBI at the door of my office investigating a situation that certainly didn't warrant 'big guns'.) What you are enduring is way more than anyone should have to do at any one time. Keep breathing and perhaps some things will get back in balance.
    Maggie

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    • #32
      Kara,

      We are all here to help you in any way we can. While we aren't there physically, I know that there are several of us, me included, that will do anything else we can to help you all you have to do is ask.

      Sending you lots of hugs,

      April

      Comment


      • #33
        Dear Kara,

        It breaks my heart that you are going thru so much right now. I hope that you are feeling better this morning. I realize the pain will still be there, but I hope that you are thinking about different ways to move on.

        When we talked last nite, I told you that I really, truly think that you need to see a neurologist, since you describe the pain as "burning and shooting". We all know that shooting, burning pain is nerve pain, and neurologists are the ones who treat nerve pain, so it just makes sense. Also, since you did so well for so long on neuropathic meds, yet didnt really respond to other things, that also makes me think it's neuropathic pain.

        Just to recap our conversation, I think the first step for you would be to call around to different Neurologists, and see which one has the shortest waiting list to get into, and then try to get a referral from your Dr. to go there. (After all, since we have no idea, at this point who the best one is up there, why not get into whoever you can see first, while you are trying to find out who the best one is?) That way, you can go ahead and start moving on this now.

        I still dont know if your new pain has anything to do with your old pain or not. But, since the PNE is nerve pain, and the new pain is nerve pain, a Neuro would definately be the one to answer that.

        It just makes sense to me that a seeing a Neurologist (or even possibly a Neurosurgeon) would be the logical next step. I realize that Dr. W (the one who has been doing your nerve blocks), is a Neuro, (as well as a dentist, and a radioligist.) But, like I told you last nite, just b/c he is a jack of all trades, doesnt make him a Master of all of them. It just seems logicial to me that someone who was devoted to a single practice of medicine would be more knowledgable in that area. So, I guess what I am saying is, just because Dr. W is a neuro and doesn't know what is wrong, doesnt mean another Neuro wont be able to figure it out. After all, look at how many URos most ICers have to see before they are d/xed.

        Others may disagree with me on this, but at this point, I think I would also call around and see which Neuro also has the LONGEST waiting list, and get a referral there as well. (My logic is that if they have the longest waiting list, they must be pretty decent, since all of their patients come from referrals from other Drs.) My logic could obviously be faulty, but that's the best way I can figure out at the moment how to find the best Dr. in your area. (And yes, I realize that the logical extention of my theory would mean that whoever you are able to get into first, would be the worst one! But, at this point, you need to see someont good and soon. And, unfortuately, the one that is good, and that one that is soon, might have to be 2 different Drs! But, I think it is still ok, that way you can get a 2nd opinion on this from the 2nd one.

        I know we covered alot of the above on the phone, but I know you were really upset after the day you had, so I wanted to write it out, sort of as an action plan.

        I hope you are able to get into see one very soon. I really, really feel like a neuro will have the key to unlock this mystery, and get you feeling better.

        Love and hugs,
        Amy

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        • #34
          kara,my sister has a very complicated form of migraine disease and she has been seeing different neurologists for years.i know she has a very good one now,she has also traceled to michigan and other places for treatment.if you would like i will find out what she knows about good ones here in syracuse,she also lives here,so she probably has a good idea by now who is good and who isn't.let me know or pm me.jamie

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          • #35
            Kara,
            Oh Kara, I am just heartbroken for you! I am also angry on your behalf!! Did your primary care doctor say a definite NO to the fentanyl? If I remember correctly, that was the one narcotic that worked for you? I was just thinking that if you could at least get a handle on some of the pain, then you might be able to get through this a little easier.
            I really like Donna's suggestion of making a list. That way you could go through it and see if there is anything that can be pushed back and taken care of by someone else. Sometimes it is very hard for us to not get things done or ask others to do them but it sounds like you really need this right now.
            As for the car and bills, I am assuming you dont qualify for any public assistance? Even if you dont, you can go and get food from shelters and churches. My sister in law did this and they gave her a big bag of good food. Any little bit helps. Maybe you could drive your moms car to her appts and back and forth? Just an idea.
            I am sure you have heard all this before, I just wanted to let you know I am thinking of you and sending you big hugs. I know you will get through this because you are so strong. You just literally have to take this one day at a time. Try not to stress about the future, just try to get through today. That always helps me because I tend to get really stressed and worried and if I only think about what I need to do that day, I tend to deal with it better.
            We all love you here and are thinking of you! Hang in there sweetie.
            Sarah
            Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

            Comment


            • #36
              Kara

              I agree with the other Dawn that posted regarding fibromyalgia. I also have fibromyalgia and I think you are suffering more than that. Though we are in almost constant pain every day I don't think it is anywhere near as intense as what you are going through. I pray that you will find help soon for everything.

              Comment


              • #37
                I've turned around

                With Amy's help!

                The day after I wrote this post about the 3 doctors not able to help me anymore, I woke up and started all over. I woke up, unable to move my arms and neck again. The morning is the worst, although it's there all day. I thought that if I make just one call today to try to get some help, somewhere, that it would feel better in my mind. I picked up the phone and made one call to a pain center that I was a patient of a few months ago. I was still in the system and they just happened to have a cancellation at 3:30 that very day! I took it because the next available appointment wasn't until March 30th, 4 weeks away. I could not wait another hour longer, let alone 4 weeks. The only problem was it was back where my Mom lives so I had to pack up all of my stuff after I had just walked in the door to my home after being gone for 2weeks. I was bound and determined to get some pain relief or some answers so I took all of the strength I had, packed the car back up, and went. I got to my parents house within an hour, took a shower, and then my Dad took me to the appointment.

                The pain management place did not say what could be wrong with me; they just checked me over from head to toe. Two different doctors looked me over. The only thing they could say was that my spine, neck and shoulders are stiff as a board and contracted. They prescribed extensive physical therapy 3-4 times a week, a muscle relaxer, and they want me to use a TENS Unit back there. The muscle relaxers, two of them, totally messed with my bladder by causing it to leak and have severe urgency and frequency. So I can not take those. I have a bladder made out of my intestines and it's constructed differently than the natural bladder. It's not something I wish to mess with. I'm going to try the physical therapy and try to not use the muscle relaxers. If I do, I would like to try a different one. Flexeril doesn't do that to my bladder but it also doesn't relax the muscles but maybe along with the physical therapy and TENS, it would work over time. I don't have any and would need it prescribed by someone. I was thinking that it would take weeks to get into a physical therapist around my home. I got in today! I hope something good comes out of it. So I have two doctors at this moment who are willing to work on getting me reduced muscle relief. Maybe I can find out during that time what the problem could be.

                Meanwhile, the doctor who cancelled my pudendal nerve blocks has reconsidered based on the findings of the pain appointment. He has put me back on the schedule for March 19th. I also see a Pudendal Nerve Specialist on March 13th, 9 hours from my home for that one last test.

                I don't have the Fentanyl....but it's a new direction to try. I have to be open minded and take the help I can get at this point. I didn’t want to go back on the Fentanyl unless there are no other options. If I can do this without narcotics, that would be WONDERFUL! I was overtired, needed some rest, and started fresh the next day! I've turned things around a bit from Tuesday.


                As far as my Mom, she's going in for a Med port today. She starts chemo in about a week to 2 weeks. As Donna and some others have suggested, I have put myself as the priority for the moment and I've made a priority list. My mom has some great Friends and other family members that are going to take care of her. A lot of help will come in all different forms. My Mom wants me to stay home and get some help. She wants me to keep fighting for answers and to only come in when I have strength to do so.

                Sarah, Thank You for your sweet post! It was nice to see you on here
                Jamie, I may contact you in the future about who your sister saw in Syracuse. Thank you for thinking of me!
                Dezcha The information that you found and the research that you did to help is such a blessing. I appreciate it so much!
                Maggie, I'm breathing and listening to some of my favorite music right now as I type this!
                Donna, Blondie, April, Sandra, Claudia, Mel and Sharon, Moonheart, Octoberfarm, Bianchi, and Janie Miranda...Your thoughts, prayers, information, and experiences help to give me strength and knowledge!

                AMY!!! Thank You for being my saving grace the other night! You don't know how much I value our friendship! The love and support you gave to me that night to keep me grounded was what had me go to bed without feeling so awful! It was YOU that made me feel like I should keep fighting and continue to look for new doctors. I wanted to give up but you brought me back in and told me that it would be better after I got some sleep! I did call my primary today and INSISTED on him referring me to a Neurologist/Neurosurgeon. Dr. C (my primary) has to refer me first before I start calling around. I'm waiting for him to call me back regarding that. You made me remember that I am not one who gives up, EVER! With your help Amy, In 3 days, I've seen a Pain Management Doctor, Gotten Dr. W to reconsider and I'm back on the original Pudendal Nerve Block Schedule, and today have my very first Physical Therapy appointment! I still have the PNE specialist in NH to see in two weeks. I could not have done all of this without the strength you so kindly gave to me Tuesday night! As a whole family, we are all thanking you for what you do for us. I wish I could be as supportive to you as you are to me!

                Love and Hugs to you all! Thank you for giving me back my fight!

                Kara
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment


                • #38
                  Kara,

                  I am so glad to know that things are looking up for you and you are feeling hopeful again. Hope is the worst thing a person can lose, and it killed me when you had lost it. I am so happy that your March appt is back on. That had me so worried b/c I know how much hope you have for that meeting. You sure are a trooper! I am so proud of the way you have continued to fight thru this.

                  With everything your Mom has faced with helping you with your battles, I know she is a fighter too. That must be where you get it! She has raised you to hang in there and fight, and I know she is going to do the same.

                  I know I am not alone in my awe of how well you have handled everything. You are an amazing person! YOU GO GIRL!!!!

                  Thank you for the thank you, but it is I who owe YOU the thank yous!! You have always been there for me, as a constant source of inspiriation, information, and support. Your like a wise big sister, except your younger than me! (I forget sometimes how young you are, since you are wise beyond your years!) Thank you for all you have done for me, and for always helping others here, even when you have barely had the strength to turn the computer on, let alone post!

                  Love and hugs,
                  Amy

                  Comment


                  • #39
                    Dear kara,

                    I am glad you are going in the right direction with the help you are going to be getting.
                    It sounds as though this community is a real good bunch of supporters as well!
                    GOD bless you, and you are in my thoughts and prayers. You, Kara, are a very positive minded person and that is a real strength.
                    Love and peace-
                    Katheryn

                    Comment


                    • #40
                      Kara...I am praying that you will get the help you need. Stay strong, hon. Don't loose that fighting spirit in you.
                      Sharon

                      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                      Where I can be found most days.



                      Link to the ICN Patient Handbook:
                      http://www.ic-network.com/handbook/

                      Link to the IC Diet:
                      http://www.ic-network.com/diet/


                      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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                      • #41
                        Oh wonderful! Isn't it amazing how when we get on the right track, the doors just seem to open up for us?!

                        You are headed in the right direction, I just know it! Things are going to turn around now just stick with it!
                        http://www.TheCraftyEwe.etsy.com

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                        • #42
                          More to add to my "complex list"

                          As if I thought the diagnosis part was over, I was diagnosed today with a very severe form Fibromyalgia and and Chronic Myofascial Pain Syndrome.

                          The Physical Therapist packed me full of information and a special routine for over the weekend. He's working with everything that hurts even the tailbone. He left nothing out today. I have a brand new TENS Unit to go along with my collection of medical supplies. I have two sessions next week. I will be going 3 times a week for 4 weeks and then we go from there. At least there are a few more answers, not just being left in the dark.

                          It's been a very long week. My Mom is in surgery as we speak. I know those that are with her will take great care of her today. My Granmother is there, so I feel SO much more relaxed about it. Grandma has been my caretaker for 9 years now! Women helping Women all over the place eh??

                          I am smiling

                          Kara
                          Last edited by Kara29; 03-02-2007, 12:19 PM.
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:
                          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                          Comment


                          • #43
                            Dearest Kara,

                            Big Big Hugs to you! It sounds like things are going in the right direction. We are all here for you.

                            Much Love,

                            Mel
                            Meds I take:
                            Elmiron, Elavil, Vagifem- for IC
                            Albuterol, Flovent, Atrovent- for Asthma and lung problems
                            Paxil, Clonazepam- for depression and Anxiety
                            Atenolol- for rapid heart rate
                            Nexium- for Gerd
                            Levothyroxin- for Hypothyroidism
                            Lasix, Pottasium- for edema
                            Lipitor- for High Cholesterol
                            I coated aspirin
                            02 at bedtime

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                            • #44
                              Kara , I'm so proud of you! I'm glad the Kara I know came back for the fight & would not take no for a answer ! Prayers for your mom from us here, As I said we all at one time trip & fall , Just get back up & dust yourself off ! You go girl ! I knew there was other things left unfound as we talked about.Hopefull you are now getting the help you need & desirve ! Love yeh! Sandra & family
                              "Never Give Up."

                              To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                              My Photobucket Link:
                              http://s237.photobucket.com/albums/f...ramack_photos/

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                              • #45
                                God bless you Kara......I am so proud that you got into the doctor today and that your other doctor is coming back around. It sounds like things are going to turn around for you and that you are going to get the help that you need. That is just wonderful. You always amaze me with your courage and strength. I pray for healing for you, your Mom, and your whole family and I am so proud that you have each other to lean on. Of course you always have us to lean on too Please get some rest this weekend and if you ever need to talk you can call me day or night.
                                Miss Bessie

                                Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                                Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                                Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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