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  • I Am so grateful for all of you.

    I dont tell you all often enough how much you all mean to me. No matter what is going on with my health or personal life, when I come here, I feel enveloped in love and understanding. I never had that before. I never really had friends like this before. I may have had two or three at a time, but never this many and never people that understood me this well, or had the depths of compassion that you all show me and each other every single day.
    I want you all to know that I dont take any of that for granted. That I value each and every post that everyone writes, not just in response to my posts, but the ones you write to each other. Somedays, I experiance the same problems that someone else wrote about, but I dont want to post mine b/c I feel like I have taken up too much time and space already. But then, I see that someone else posted with the same thing going on, and I read those responses and take the help that is offered, and it always helps!

    So, when you write a response to someone else, please know that you arent just helping the person that you think you are helping. You are also helping everyone else who reads it and uses your words and ideas to help them too, (sometimes at that moment, and sometimes we draw from your words when we need them later.)

    Lots of times you will write something that has been said here over and over, (like try a heating pad and/or ice), and even though I know to do those things, I may not have thought of it at that moment, but at your prompting, I go try it and am helped.

    I consider myself so lucky and so fortunate to have met some of the most wonderfully supportive people since I came here. I have met some of my dearest friends from coming here. (I wont dare name them, because there are far too many to name) and I dont rank any of them as in "this is my best friend" "this is my 2nd best" etc. because each is the best when I am talking to them and the most important person in the world (besides my family), in that moment.

    Thank you all from the bottom of my heart for all that you do every day for me and for each other.

    I love you all.

    Amy

  • #2
    Amy please know the feeling is mutual. You always have very moving and kind things to say. You personally helped me get through the day yesterday. Thank you for your continued support. Everyone here at the IC, thank you too for the wisdom, encouragement, and sound advice you always offer.

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #3
      ((((((Hugs)))))) and
      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.

      Comment


      • #4
        Amy...

        Thanks so much for the kind words to everyone..
        You have also been a very good means of support to alot of us.. You have always been here when I needed you...And I know you have been here for sooooo many others..You have a way with your kind words that touches all of us..(((((((((((hugs))))))))))) and you know im always here if you need me...
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN 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.

        Comment


        • #5
          Ditto to all that everyone has said and.....

          I love you too Amy, and am so greatful you've been here for me! MWUAH!
          Thank You all so much to everyone here for all your sharing, caring and support!
          < My "Bear"
          CurrentTreatments:
          Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
          IC Diet
          Hydroxyzine 50 or 100mg at night (Is restarted)
          Zoloft 100mg 4/8/07 (Is restarted)
          Klonopin 1/2 mg 4 X Day (started 3/17/07)
          Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

          Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
          Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


          My Myspace page - http://www.myspace.com/42620225

          Comment


          • #6
            Aww...you guys are so sweet!!! See why I adore you all! Sending big sloppy kisses and gentle hugs to all of ya, (just nobody touch my bruised shoulder! )

            Comment


            • #7
              Amy, merci, merci, merci mille fois, thank you for the times you've made me laugh, for the times you've let me cry all over you, and for the many, many times you've helped me figure out a concrete plan for dealing with the situations that come up. Many posts that you have written to others have helped me too. Among the thousands of people who come to this site to ask for help or to give it, you stand out because of the true compassion that shines through each post, and because of the time and care you take to try to help anyone you see in need, whether you know them or not.

              Now, would you just please say, "Thank you, Carolyn," and not try to brush it off?
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                Okay...I'll try....Thank you, Carolyn! But it is hard!!

                Comment


                • #9
                  Amy,
                  This is a very nice post. We are very lucky to have you as I don't think I've ever read a thread about someone who is in need that you didn't respond to. You are always trying to give more suggestions. You are a great friend to all of us.
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

                  Comment


                  • #10
                    Same goes for you, Christine! You are also always there any time someone is in need. My hats off to you! Thank you for that! I also have to say that I love the pics of Griffin. What a cutie!!!

                    Comment


                    • #11
                      Thanks, Collin is a cutie too though he doesn't look too happy to be having his picture taken there, lol. Griffin in such a ham, he always likes having his picture taken.
                      Christine



                      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                      I have tried every oral medication as well as rescue instills and DMSO.

                      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                      Also proud mom to the best Bullmastiff on earth, Claus

                      Comment


                      • #12
                        Originally posted by GriffsMommy View Post
                        Thanks, Collin is a cutie too though he doesn't look too happy to be having his picture taken there, lol. Griffin in such a ham, he always likes having his picture taken.
                        OMG! That pic was taken Easter 2 years ago. It was the most recent one I had of us together, since I am usually the photographer. Anyway, we were at the Easter egg hunt at church, and he would go and pick up an egg, open it and if he didnt like the contents, he would throw it on the ground and stomp it!!!! I was mortified! I tried saying, "no, dont do that!" But, he persisted, so I ended up having to spank him right there in front of God and everybody! Afterwards, I tried to hug and kiss him so he'd know I still love him, but that behavior was NOT acceptable. Anyway, as you can see from the photo, he did NOT want any hugs or kisses from me right then. That is why his arms look like that and he has that scrunched up face. LOL! Anyway, it was the only pic with the two of us, but it also makes me laugh when I see it for remembering what he did that day. Anyway, now you know the story behind the pic. Hopefully, we will get a new one next Sunday without his mean face.

                        Comment


                        • #13
                          Amy,

                          I LOVE YOU TOO!

                          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


                          • #14
                            That's a funny story Amy, it always seems that they act their worst when you want them to act their best. I am sure Griffin's terrible 2's will rear their ugly head this week while I'm trying to rest after my hydro. I have no idea how I'm going to hide out upstairs in bed w/o him bothering me as he has to be everywhere mommy is. Hubby said I'll sneak upstairs and he'll tell him I'm at work, lol
                            Christine



                            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                            I have tried every oral medication as well as rescue instills and DMSO.

                            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                            Also proud mom to the best Bullmastiff on earth, Claus

                            Comment

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