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  • Hardest Two Weeks

    These have been the hardest two weeks of my entire life, I think, or at least it seems so now. For four years, we did not know where my chronic pelvic and back pain was coming from and have the Interstitial Cystitis diagnosis. Somehow, I thought things would be better once we knew what this was, but it seems they have gotten worse.
    Ever since the procedure to diagnose this, my bladder has decided to function whenever it feels like it. So, now instead of spending these precious days with my husband and family, I am stuck in the hospital on a catheter. It’s really SO depressing. The worst part of it all is that as of yet, there IS NO CURE for this disease.
    It means the bladder wall/lining has broken down so much or is irritated so much that ANYTIME urine hits it (when any urine gets in there), it burns, hurts and is just plain uncomfortable. To add to all this—this week, I became dehydrated and have two positive blood cultures for some kind of septic bacteria in the blood. It almost makes me wonder, what the heck is going to happen next.
    Please keep Aaron, our families and me in your prayers. Aaron has been wonderful. I could not have prayed for a better husband in this time of need or anytime. He is ALWAYS there for me, regardless of how tired he is or how stressed out he becomes.
    We also need prayer for the Air Force Force-Shaping Board. They are convening and will announce the 39% of people that will be cut in Aaron’s class year from the Air Force. Yes, I do hate the TDY’s and when he’s away, but it IS a secure job, at least it was. I, personally, don’t feel that Aaron will get cut because of his variety of experience (two trips to Afghanistan, one to Japan, Korea and one to California). All of these trips were for essential communication systems that needed correction. We both know that if he is cut, it was in God’s plan and are trying to accept it. We also know that God will provide for us and open another door for Aaron’s career if he closes this one.
    We just ask for prayer on this and my health. I had wanted to finish my master’s degree, but because of illness and this new diagnosis being out of control, I have had to drop out yet again. It seems like I have been *trying* to go to school at least half my life or longer. Thank you for all your prayers.
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

  • #2
    April,

    I am so sorry that you are sick and in the hospital. I hope that you get to feeling better soon. Hopefully, once the antibiotics kick in, you will get to feeling better. I am sending up prayers for you, Aaron, and your families. I hope things improve soon. Many hugs, Amy

    Comment


    • #3
      April, I am so sorry you are going through such a rough time... I have been there so I know how you are feeling..I will keep you and your husband in my thoughts and prayers..

      I see where you are taking Pyridium Plus, I could not take it, because I could not void at all while I was on it...You might ask your doctor about changing it to just Pyridium, It sure made a differance with me...
      Good luck and God Bless both of you...

      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


      • #4
        From one April to another!

        You and your hubby are in my prayers! I am so glad you are blessed with such a caring and supportive spouse. I know the catheter thing is miserable and I hope they are able to get things better soon so you can at least get rid of that!

        As for school - your health is number 1. Do not beat yourself up about school - I am attempting a masters for the 3rd time this semester and won't know until the end in a year or so if I will finish. There is no clock on education.

        I have read a lot of your posts and I think you are an amazing woman. I am so glad you found us here on the boards!

        The military is such an interesting phenomenon for lack of a better way to put it. I will also be praying about that situation too.

        Hope you get better soon!

        Hugs,
        April

        Comment


        • #5
          April,
          I am sorry that you are having such a tough time. I hope that you feel better soon and I will keep yourself and your husband in my thoughts
          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


          • #6
            April -- I'm wishing you the best for a speedy recovery... and I'm sorry you had to go through all of this!
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. I 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


            • #7
              Thanks guys

              Hi,

              Thank you all so much for your prayers and responses. Prayer is really all that I believe can help at this point. To answer the question about regular Pyridium and Pyridium Plus, I had NO relief from the regular and the PLUS has been good. I also take Percocet and Valium as needed. The Uro just started me on Enablex. Does anyone have experience with this one?

              This board is wonderful. Without it, I would feel SO alone. It really is amazing to learn how many people actually live each day in pain with IC.

              What is interesting to me is that for some this condition is completely debilitating and for others, they work full-time and live with the pain. Maybe it's different for everyone. I just know that I do not have a high tolerance for pain.

              Thanks again.
              Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

              Comment


              • #8
                Originally posted by aprilmae

                As for school - your health is number 1. Do not beat yourself up about school - I am attempting a masters for the 3rd time this semester and won't know until the end in a year or so if I will finish. There is no clock on education.

                I have read a lot of your posts and I think you are an amazing woman. I am so glad you found us here on the boards!

                The military is such an interesting phenomenon for lack of a better way to put it. I will also be praying about that situation too.
                Hey April,

                Thanks. Wow, there's another April who has IC too. Now, I really don't feel so alone. Do you work or stay home? If so, how do you handle working with this disease? Now, I agree with the thing you said about school because everytime I get stressed out, I have a flare. I have learned that stress can actually cause IC to be worse. Thanks for the "amazing" woman comment. You just made my day. Right now, I am just so depressed because I am in the hospital and don't know when I get to go home. And, today is mine and Aaron's six month anniversary. Instead, we won't even be able to make love EVEN IF I get to go home because of all the soreness from the catheter. They did just take that out and are working with me on re-training my bladder function.

                Thanks again to everyone.
                Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                Comment


                • #9
                  April,

                  I quit working full time June 2006. I tutor part time to make some extra money. My boyfriend is helping me so that I can go back to school. I am taking 9 hours - 6 online and 3 class hours. The stress really got to me over the weekend - I had a meltdown because of all of the projects. However, my boyfriend just reassured me that I could do it and if I need to that it is okay to cut back on the classes. I stay at home all day currently. It allows me to rest when I need it and to work from the comfort of my favorite chair.

                  Intimacy is very difficult at times with this disease. However, there are ways to foster that intimate feeling without the act of making love. I am sure it will make Aaron's day just for you to be home. Also, just let him hold you and spend time talking to him or just being quiet together. Kissing is always fun too. Don't focus on the not being able to make love part, hard to do I know, but just tell yourself that you are saving that for a day when you can make the most of it!

                  Sending lots of hugs,

                  April

                  Comment


                  • #10
                    I'm sending well wishes and will keep you my my prayers.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Keeping you in my prayers
                      I hope you get to come home soon and Happy 6 month Anniversary.
                      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

                      Comment


                      • #12
                        I just read your story, and my heart aches for you. Im getting married in September to the most wonderful man in the world. We are so lucky to have such great men in our lives.

                        I just wanted to let you know that there are some of us out here who dont have daily pain. I only have a few triggers, so as long as I stay away from those, Im in pretty good shape. I have one of the most mild cases on the board. If it wasnt for a good doc, I may have gone years without a diagnosis, and who knows how bad it wouldve gotten by that point.

                        Stress tends to be one of my biggest trigger. So I do whatever I can to let the small things roll off my back. Ive also found Im a happier person because of this. So in a way, IC has been good for me.

                        Sending you healing thoughts.

                        PS My fiance was raised in Biloxi! We went down there 10 months before Katrina hit. It was wonderful down there. The people were so nice, and the area is so beautiful! I cant wait to go back.
                        Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                        I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                        Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                        I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                        Comment


                        • #13
                          Just saw your post and am sending you and well wishes for pain free days and nights. I'm sorry you're going through so much right now. I'm also sorry that you have so much stress regarding your husband's job. Who would of thought that they would dismiss so many of our armed forces????? I just can't understand why they would even THINK of that considering the state of our world these days.

                          and let us know how you're doing!
                          *IC-- Summer 2004; PFD--October 2005
                          *Fibro--Fall 2000; CFS-- Fall 2000
                          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                          Total Abdominal Hysterectomy--adenomyosis--9\08

                          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                          Comment


                          • #14
                            We are with you April!

                            Dear April,

                            I'm sorry that you are so sick and in the Hospital on your 6 month Anniversary!

                            I'm sorry I didn't get back to you. My Mom is very sick and she doesn't live near me so I am not home. I left shortly after I talked with you. I will have to PM you my cell phone if you would like to talk.

                            The things that are happening to you and Aaron have to feel so frustrating. I'm very glad that you have each other to make it through this. It makes such a difference to have a loving spouse. I can tell so very much that you absolutely love him unconditionally. I believe you will get through this together in time and that you will be able to celebrate you new life together.

                            Although there in so cure for IC. There are so many great treatments for you to eventually try. My hope is that as soon as you get to your IC Specialist, that you will be able to start trying some of those treatments! Catching IC early is one way to have some of those treatments to be effective in the long run. There are lots of people who go on to live awesome lives, even with IC. One HUGE example is Jill O. The Founder and President of this whole entire network where you will find the greatest support! Her story is uplifting and gives you an idea of what can be accomplished with IC. http://www.ic-network.com/patientstories/jill.html

                            Each and everyone else on here is fighting with you and they all have their own stories of how courageous and full of strength they are! We may differ in regards to what stages we fall under and what treatments we use. It sounds like You are in a real down spot with it now and it feels like all of the cards are stacked against you. When you are so sick and in pain, it's hard to see a possible end to the suffering.

                            I will be thinking of you as you work on re-starting your bladder. Aaron must know how much you love him by how hard you are fighting to get better! I will be thinking of his career as well. Somehow things have a way of working out. Your faith seems so strong and that is wonderful!

                            We are all with you April and Aaron! You will find some wonderful support and information on how to learn to cope with IC and how to get around some of its obstacles.

                            The ICN Patent Handbook is a great place to start! They even have a section on Sex. Here is one of the topics on that board: http://www.ic-network.com/handbook/index.html

                            There are so many wonderful people here who have been so kind to share their knowledge and wisdom. I hope that you will find comfort along the way.

                            Warm and Healing Hugs to You and Aaron!

                            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


                            • #15
                              April,
                              I am sorry you are so sick. Like Amy, I hope once the antibiotics kick in you will feel better. I know how ever changing and stressful it is to be a military spouse and the fear of having to leave military life--while it has it's downsides, it is also a pretty decent protective net. Please PM me if you need to talk. I have been in so many spots that you have been in and know your emotions. Hang in there.

                              Hugs,
                              Barb
                              (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                              [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                              :angel: IC Angel Volunteer Coordinator :angel:
                              :) Contact me via PM or e-mail if you would like to help
                              I have learned all about life in 3 words: It goes on! :D--Robert Frost
                              PCOS 7/85
                              RSD 7/94 :headbang:
                              Endometriosis 9/98 :toilet:
                              Antiphospholipid antibody syndrome 9/99
                              Kidney stones--too many to count
                              Factor V Leiden mutation 10/02
                              IC 6/03 :evilsmile
                              Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                              "Spirit is an invisible force made visible in all of life"--Maya Angelou
                              "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

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