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  • will only be here a few more months

    Things have gone from bad to worse at home. I would leave this minute if it were not for Patches and the kitten and another pet I have. If I go they die. The SSI money I get will go for groceries and house exspenses, No tens, cycotoprotek or anything else that medicaid will not pay for. I will go back on the 4 vicoden a day and be the nice little maid. Will quit PT on Tuesday for good. I know where I stand with my so called family. I won't be able to pay for the internet either and that is only good for a few more months. Won't get on here much either if at all. I want to say thank you to all of you who have helped me out. I wish you all the best in life and I hope you get some piece with the IC.

  • #2
    OMG Mary..
    Why do yo have to leave? Where are you going to go? sorry for all the questions but I will really miss you..

    (((((((hugs)))))))))
    Ronda
    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


    • #3
      Mary,
      I'm not sure what's going on with you, but it sounds really sad, and I know we will miss you as much as you will miss coming on here! I hope your ok, let us know what's going on with you or if we could help in anyway.

      Kari
      Kari

      I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

      Comment


      • #4
        Did I miss something??? I hate to read any of this. Please try to keep in touch even if it means going to the library once a week to geet on line ((((((((((hugs)))))))))
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          Sorry things arent going well at home right now. I agree that going to the library sounds like a great idea, if you end up having to get rid of the internet at home. In my town, there are 3 libraries, and all of them have several computers that they let people use. I just hate to see you get rid of so many things at the same time (your online support group, computer, TENS, Physical Therapy, etc.) After all, you never know, something could be helping and I would hate to see you get worse. Also, I hate to see you become more isolated. It is so important to all of us to have others to reach out to when we are feeling down, and it I know it helps me to come here and know that everyone here understands. I just think that going to the library sounds like a good option so you dont have to give up using the computer too and all your online friends and support groups.

          Regarding your living situation, that has got to be incredibly difficult. I dont know what programs there are in your area, but have you tried contacting a social worker to find out what services you would qualify for? For example, with your income and disability, you would probobly qualify for govt assistance with housing, food, utilites, etc. You might even qualify for free housing. It would defintately be worth looking into!

          It just breaks my heart that you seem so down right now. I wish I knew what to say to you to help you! But, please remember we are always here for you! I gave you my number in a pm before, but if you lost it, and need it, let me know, and I will send it again. I have unlimited long distance, so if you lose the internet and ever need to talk to someone, feel free to call me and I will see that you called and call you right back so it wont cost you anything.

          You have so many people that care about you. I dont think you realize that sometimes, (or how much we all care!!!! )

          I hope things get better soon!

          Sending big hugs,
          Amy

          Comment


          • #6
            Mary: With medicaid and your disability you might be able to get section 8, I know usually there is a long wait; sometimes years, but if you have your letter stating your disability you might be able to get to the front of the line (this is what my friend was able to do--she was way in the back and when she went up with her award letter she was put up front and within 2 months had a house!) so you might be able to try that. Are you on Goverment assistance? You need to go to your local DHS office and talk to a worker. There are other programs with the state that they can help you with.
            I also agree with everyone else, please don't give up all of your treatments at the same time, as you never know which is helping you. As to th internet services, go to the local library as they usually have computers and you can at least check in once a week with us and let us all know how you are doing. It is very important for you to have support. Good luck - hope you get to feeling better. Sending lots of hugs your way.

            Comment


            • #7
              I agree with everyone else, the library is great for free internet. I did that for about 6 months. Would just go about once a week and ours allows 30 min. and that was usually enough to get done what I needed. Good Luck.

              Comment


              • #8
                Mary it just breaks my heart knowing you might leave. I hope Amy and the others were able to give you some good information to help you. We will miss you Mary and I do hope that you will let us know how you are doing and if you are ok and getting help.

                Sending many hugs, Trishann

                Comment


                • #9
                  Thank you all for the caring words. I did find a web site that has free interent service. You get 10 hours a month. I can at least visit here a few times. I really feel like I am alone where I live on the IC and life situation. I can't afford the TENS because I need special supplies for it and Medicaid won't pay for them. Without the TENS then PT doesn't help at all. I'm back on 3 vicoden which at least Medicaid will pay for. I won't have to worry about that. In a way I'm glad I quit PT. She just doesn't really understand IC and how I feel. I told her I couldn't afford the TENS on my own and I will not accept help in getting the supplies from people anymore. She said I was being stupid and should just take the money and get the TENS back. I told her no that it comes with a price. She never liked that I wore sweat pants too. Said they were baggy which I explained to her most all my pants are because of the stomach pain I have due to the IC. She told me about another patient she has and said she was much fatter then me and her jeans she bought at a store and have rubber waist band. They looked good on her. Told her rubber waist bands on jeans can be more painful then the zipped ones. I didn't know I was suppose to get dressed up for PT. My Uro never once complained on how I looked and I have gone there looking 10 times worse then what I looked like going to her) She said if I wanted to come back I could just call her but won't. She expected me to keep up with 1 1/2 hours of exercise a day without the tens even. Why she couldn't understand the TENS was the one main thing for help with the IC I don't know but I left feeling really stupid and even put down more. I can't really afford the $50.00 a month in gas for going there too.
                  I do feel like just crawling into a hole somewhere or get stranded on an island and be by myself. I just can't make people understand any of this and how I can't be "normal" anymore.
                  The baby hat thing for the hospital I don't know if I will keep up on. They did call and say the other hats were to big and want me to meet with the lady on Friday. I did finally figure out how to knit on 3 needles. That only took hours to do but I will say the hats do look better that way. I'll see how I feel mind wise when I get there next Friday and see how they treat me.
                  I'm still staying where I am living now. Can't leave Patches, kittens and my pet goose behind. (Which is another thing I told her and she said I was being stupid for ruining my life over animals but I told her they have feelings too and my pet goose only knows me for his family and I"ve had him since 1994).
                  I don't know, maybe it is me and I am stupid and evil and nothing wrong with me?
                  Thank you all for the kind words. It means soooooooooooo much to me.

                  Comment


                  • #10
                    Aw Mary, I wish I lived near you then I would come hang out with you and cheer you up ...I dont really have any friends around here where I live .. So glad though I have friends on the ICN who keep in touch with me..Well if you need anything just let me know..((((((((((hugs))))))))))))

                    Your friend Ronda
                    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


                    • #11
                      Thanks Ronda. Think I'm just lonely. The nurse at my Uro's who retired used to hug me at times. There have been times when I wanted to hug my Uro for being such a great help to me but thought no shouldn't do that since he is a male. Guess I need either a really big hug or a good kick in the pants to snap me out of this.

                      Comment


                      • #12
                        Hugs are much nicer to your bladder. I'd vote for hugs.
                        Kim

                        Diagnosed August 2001

                        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                        *****************************

                        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                        Comment


                        • #13
                          ((((((((hugs)))))))


                          ((((((((hugs))))))))



                          (((((((((hugs)))))))))

                          Comment


                          • #14
                            Now that Alaven Pharmaceuticals has acquired the rights to Cystoprotek, they MAY offer a drug assistance program. I don't know if they will.... because I haven't talked with them about it... but their website does offer some information. Check out: http://www.alavenpharm.com

                            I think you could give them a call and ask if they will offer a drug assistance program for IC patients. You never know!! They might! Nice people.

                            Jill
                            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                            Comment


                            • #15
                              (((HUGS))) I am so sorry you are going through a rough time right now. I know that you've been hurt by your family many times, and I wonder if this might be a way you can be free of all this hurt, by moving on your own. I know it's so hard and scary, but I hope so much for a happier, more joyful life for you and less sadness and depression. I'm hoping and praying that things will work out so that you'll have a better life now.

                              I'm also sorry about the TENS unit supplies. That's just awful. I'm glad the pain meds work for you, though, and Jill's post is so helpful, I hope they will be able to help you out! You deserve good medicine and good treatment - you are a good person!

                              I'm glad too that you'll be able to use the internet at the library at least or have those ten free hours per month at home. That's sure better than nothing, and I hope so much you will feel supported and comforted by everyone here, by your family on-line.

                              Blessings and hugs and prayers sent your way,
                              Lori

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