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    Hello everyone! I just wanted to ask for some prayer from the people who understand this disease the most, all of you IC sufferers. I have been having a REALLY bad time with my IC and Fibromyalgia. I am pretty sure this cold weather does not help either. I also have been very depressed and suffering from panic attacks again. I have been under a LOT of stress with financial problems, marriage problems, and well, lets just say that i have some serious decisions to make. I know this does not help either. I would really appreciate ANY prayers i can get. I just feel so alone. My husband is a Pastor at an Assembly of God Church and i feel like sometimes I am being judged cause I miss a lot of Church, or because I am not able to do as much as I used to in the Ministry. Or that "they" are doing so much in working in the Ministries and I am not. They act like I am choosing not to be involved instead of being too sick to!! I'm so frustrated! I used to do EVERYTHING and was so active in the Church but things are different now, I can't even work a job cause i am so sick! I am getting SSI disability. I have heard the comment, "Your sick? But you look fine" one too many times. So I explain things to them and just hope they understand. The newest comment I get often is, " Oh wow, I haven't seen you in so long! I wasn't sure you still came to Church anymore!" Ya, like they would not have heard that their Pastor and his wife had separated or divorced. Where did they think I went?! GRRRR! I am always sitting in the back of the Church by the nearest bathroom for convenience! I don't feel like I get support from them so I just feel so misunderstood. So I just try my best and explain things as I go along. Thats all i can do. But the one that I need the most support and understanding from, my Husband, I don't get! I have had IC for 10 years and Fibromyalgia for 14 years and he STILL doesn't "understand" or supports me. I feel like he is getting tired of me. I see it in the way he looks at me when I am sick or not able to cook or clean the way I used to, or in the snide comments about me being sick a lot, or just the fact that he just doesn't show love or attention to me anymore. I feel like i am just a burden to him. My 4 kids notice it too. They get so mad and say things like, "why does Dad treat you like he does, it's not like you asked to get sick or like you can help it." Wow, out of the mouths of babes. He complains a lot about how we need more income, even though he knows I can't work, and by the way, I DO bring home a SSI Disability check, I can't help that it is small, but I worked VERY hard for 3 years to win my case so, hello?! He acts like i can just get up and go back to work….I WISH!!! He always seems to bring up other wives of his friends who do SO much, like work, cook, clean, ect. Why in the heck would he do that, he knows how hard I am on myself! I feel guilty everyday that I can't do what all the other women around me do! I feel like I'm not a good wife, Mom, friend, ect. anymore, just because I am not doing all the things I used to before I got sick. I NEVER used to think like that! Anyway, I could go on and on, (which I basically already have :roll eyes but I unloaded enough. lol I guess I just needed to vent. I appreciate ANYONE who actually read this whole thing, and REALLY appreciate those who took time to pray for me. And if no one sees this or prays for me, thats ok, cause I know the most important One who needed to see this did,… God! Thanks and take care, Cassandra
    dx Fibromyalgia April 2000
    dx Endo. Dec. 2003 had hystorectomy Feb. 2004
    dx IC May 2004
    dx Acid Reflex Nov. 2009
    dx Restless Leg Syndrom July 2010
    dx Degenerative Arthritis in my spine Oct. 2011
    lost my mind: A long time ago!! LOL

    Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

    Meds: Elmiron 100mg once daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 30mgs 2 times a day for chronic pain , Norco 10/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Omeprazole 40mg once a day for Acid reflux, Oxybutynin 5mg twice daily for bladder frequency and spasms, Pyridium as needed, and Zyrtec once daily for allergies
    Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

  • #2
    Re: Prayers appreciated!

    Hi Cassandra,

    I'm so sorry to hear about your troubles. That would definitely be hard as a pastor's wife. I know I have missed a lot of church in the past few weeks because of a flare (and a cold before that). When I'm really flaring, I can't get dressed up for church and don't feel comfortable wearing yoga pants!

    Have you tried talking to your husband, I mean having a serious sit-down talk about how you feel? Sometimes spouses don't realize the pain they're causing because they haven't been told. I feel the same way as you sometimes about feeling like my husband is tired of how sick I am a lot. When it's not my bladder, it's my migraines, or IBS. It's like something tends to bother me on any given day. I know he wishes things were different, but they're not. We do have to talk it out every now and then to make sure he's still understanding what I'm going through.

    I will pray for you,
    Jane
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

    Comment


    • #3
      Re: Prayers appreciated!

      Cassandra, Have you shown your forum post to your husband or talked to him about the things you mention? Does he know how you feel? Any possibility you could get couples counseling? Maybe see another minister for counseling? I am sure he loves you, he probably does not know how his comments make you feel.

      As for the members of the congregation, I would TRY to ignore them as best I could.

      Prayers for you, God knows. Jo Ann

      Comment


      • #4
        Re: Prayers appreciated!

        I am so sorry you are going through this. I agree, talking to him and really explaining sounds like it could be a good start. i guess i realized how can anyone else understand? it's up to us to explain, but even then they don't feel it. but we can ask for compassion and help.
        it's so hard to ignore other people--i am wondering, is there a prayer group at the church? if you were comfortable, asking for their prayers for your health might help a few people realize how unwell you are and support you. sometimes just a few friendly faces is all we need, but that is just one thought...
        but sending you lots of thoughts that things find a way forwards soon.

        Comment


        • #5
          Re: Prayers appreciated!

          One thing you have to be thankful for is your children. I know you let them know how much their support means to you, but I'll still tell you to be sure you tell them an extra time for me. I agree that asking for prayers in your prayer circle is a good idea. I know that's not easy, but you can do it.

          And please know that here you have a safe haven where people understand what you're going through.

          Be strong.

          Hugs,

          Donna
          Stay safe


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          Comment


          • #6
            Re: Prayers appreciated!

            Dear Jane, first of all, thanks for responding, I really do appreciate it. I laughed out loud about your comment about Yoga pants, I have SO been there. We have to sometimes dress for comfort...even at Church lol Thank you for the great advice and for caring. Unfortunately I have sat down with him, several times, and he just promises to do better and apologizes. We get into deep issues too and we get everything out that either of us feel or are frustrated about. 14 years later...still going through it. I have explained my diseases to him in detail SEVERAL times as well. We even went to marriage counseling and he just doesn't like to go. He says, "i council people with marriage problems and other issues too, so I know what they will say or tell us what to do. We just need to talk things out and turn to God for answers, not this Councilor." AHHH, he is contradicting himself cause HE still councils people so if he truly believes this then he shouldn't be counseling, HELLO?!!! And we do turn to God, in everything! Sorry, as you can tell, I am so frustrated and at my wits end! I do understand this is very hard on him too so I have put that into prospective as well. I just feel like I don't know what else to do. And another REALLY big issue we have been trying to get through is that I found out he was talking to a women on Facebook private messenger for about 6 months till I found out. He said NOTHING physical ever happened, he swears on his kids and dead Grandparents lives nothing physical happened. But it is still cheating to me, especially if "I Love you's" and love names where being said between them! He called her "Babe", the same name he has called me our whole 19 years of marriage, and the year and a half we were dating and engaged!! My heart is STILL broken! So you can imagine how hard this has all been. We are trying to figure things out, especially since we have 4 kids. It has been 9 months since I found out and I still can't get over it. I feel like it's because I am sick and not in the best shape and this women is drop dead gorgeous, in great shape, NOT SICK, Works, Ect. What a perfect way to bring my insecurities out!! WOW, I can't believe I just told you all this! How embarrassing! I am sorry to bother you all with my crazy life. I don't really have no one to vent to cause of him being a Pastor, we are dealing with this all privately with our Senior Pastor and a councilor. (Which we stopped going to cause he felt it wouldn't help) ??? Anyway, as you can tell, I have a lot to sort out and pray about. Not to mention make decisions about. Sorry to bug you and probably bore you with all this. I just appreciate the ear to listen, any advice, prayers, and compassion to respond to a hurting person. Thank you Jane and the rest of you sweethearts that make me feel loved. Take care all and I hope you are all doing ok, Cassandra
            dx Fibromyalgia April 2000
            dx Endo. Dec. 2003 had hystorectomy Feb. 2004
            dx IC May 2004
            dx Acid Reflex Nov. 2009
            dx Restless Leg Syndrom July 2010
            dx Degenerative Arthritis in my spine Oct. 2011
            lost my mind: A long time ago!! LOL

            Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

            Meds: Elmiron 100mg once daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 30mgs 2 times a day for chronic pain , Norco 10/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Omeprazole 40mg once a day for Acid reflux, Oxybutynin 5mg twice daily for bladder frequency and spasms, Pyridium as needed, and Zyrtec once daily for allergies
            Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

            Comment


            • #7
              Re: Prayers appreciated!

              Originally posted by joannharllee View Post
              Cassandra, Have you shown your forum post to your husband or talked to him about the things you mention? Does he know how you feel? Any possibility you could get couples counseling? Maybe see another minister for counseling? I am sure he loves you, he probably does not know how his comments make you feel.

              As for the members of the congregation, I would TRY to ignore them as best I could.

              Prayers for you, God knows. Jo Ann
              Dear Jo Ann, thanks for responding, I appreciate it! I haven't shown him my post cause he might get mad that I posted things about him. He is prideful unfortunately. But like I said in my reply to Jane, I have talked to him and have gone to counceling. I just have to give EVERYTHING to God. Good advice by the way, in how to deal with the congregation that are being hurtful...I am trying to do my best to ignore them and there comments. And you are right, God knows! Thank you very much, Cassandra
              dx Fibromyalgia April 2000
              dx Endo. Dec. 2003 had hystorectomy Feb. 2004
              dx IC May 2004
              dx Acid Reflex Nov. 2009
              dx Restless Leg Syndrom July 2010
              dx Degenerative Arthritis in my spine Oct. 2011
              lost my mind: A long time ago!! LOL

              Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

              Meds: Elmiron 100mg once daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 30mgs 2 times a day for chronic pain , Norco 10/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Omeprazole 40mg once a day for Acid reflux, Oxybutynin 5mg twice daily for bladder frequency and spasms, Pyridium as needed, and Zyrtec once daily for allergies
              Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

              Comment


              • #8
                Re: Prayers appreciated!

                Originally posted by KikiUK View Post
                I am so sorry you are going through this. I agree, talking to him and really explaining sounds like it could be a good start. i guess i realized how can anyone else understand? it's up to us to explain, but even then they don't feel it. but we can ask for compassion and help.
                it's so hard to ignore other people--i am wondering, is there a prayer group at the church? if you were comfortable, asking for their prayers for your health might help a few people realize how unwell you are and support you. sometimes just a few friendly faces is all we need, but that is just one thought...
                but sending you lots of thoughts that things find a way forwards soon.
                Dear KikiUK, thank you also for responding, it was greatly appreciated! Great minds think alike, I have been open to my prayer group AND have gone up in front of all our Church when the Pastors are praying for the sick. I am not ashamed or worried about what people will think anymore. It's not my fault I got sick, and I am doing my best. Besides, they are not the ones living in my family or my shoes. Thank you so much for the encouragement, great advice, and kind thoughts, Cassandra
                dx Fibromyalgia April 2000
                dx Endo. Dec. 2003 had hystorectomy Feb. 2004
                dx IC May 2004
                dx Acid Reflex Nov. 2009
                dx Restless Leg Syndrom July 2010
                dx Degenerative Arthritis in my spine Oct. 2011
                lost my mind: A long time ago!! LOL

                Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

                Meds: Elmiron 100mg once daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 30mgs 2 times a day for chronic pain , Norco 10/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Omeprazole 40mg once a day for Acid reflux, Oxybutynin 5mg twice daily for bladder frequency and spasms, Pyridium as needed, and Zyrtec once daily for allergies
                Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

                Comment


                • #9
                  Re: Prayers appreciated!

                  Originally posted by ICNDonna View Post
                  One thing you have to be thankful for is your children. I know you let them know how much their support means to you, but I'll still tell you to be sure you tell them an extra time for me. I agree that asking for prayers in your prayer circle is a good idea. I know that's not easy, but you can do it.

                  And please know that here you have a safe haven where people understand what you're going through.

                  Be strong.

                  Hugs,

                  Donna
                  Dear Donna, thanks for ALWAYS caring and responding to us when we really need it, you are one special lady! I appreciate the credit you give my kids, they deserve it! I tell them all the time how much I appreciate their true love, support, and understanding. I will let them know what you said about them thanks for reiterating the fact that I have a safe haven here full of people who care and understand...it means a lot! I am so glad I am not alone! Thanks again and take care, Cassandra P.S. We are all lucky to have you around
                  dx Fibromyalgia April 2000
                  dx Endo. Dec. 2003 had hystorectomy Feb. 2004
                  dx IC May 2004
                  dx Acid Reflex Nov. 2009
                  dx Restless Leg Syndrom July 2010
                  dx Degenerative Arthritis in my spine Oct. 2011
                  lost my mind: A long time ago!! LOL

                  Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

                  Meds: Elmiron 100mg once daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 30mgs 2 times a day for chronic pain , Norco 10/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Omeprazole 40mg once a day for Acid reflux, Oxybutynin 5mg twice daily for bladder frequency and spasms, Pyridium as needed, and Zyrtec once daily for allergies
                  Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

                  Comment

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