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An Update

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  • An Update

    Well today marks two months since I had my botox procedure and one month since my return to work.

    Thankfully the Botox has REALLY helped the frequency. It has definitely given me my life back in this regard. I do wish the pain was better. I feel like I live on hydromorphone and this week I have added pyridium (which causes retention for me), and diazepam because my pelvic floor is out of whack.

    Sitting is very difficult at times. I presently have to sit on two bladder friendly cushions to feel any sense of comfort when sitting. Hard chairs are my enemies. Thankfully I have a good pelvic floor therapist.

    Being back to work is a gift. There were times in January that I wondered whether I would be able to work again because all of it combined was never ending pain and frequency. It had come to the point where I had lost most of my passions.

    Going on leave for nearly 3 months helped greatly. It helped me to heal not only physically but mentally and spiritually. Taking the time off has cleared my head and refreshes me.

    Before going off on leave I was a mess in every way especially physically. I also came to the point where I began to feel that I couldn't live out my dreams due to this condition. Thankfully God really spoke into my heart during my time off.

    Now I have decided to not cancel my dreams because of this condition. I applied to a dream job that I always wanted. I was offered the job and I accepted. Before I would have declined.

    I know this may seem crazy that I would do this but I feel completely peaceful about my decision. They have made accommodations for me at my new work place. They are also paying for my move. I will also be way closer to my specialist and I will have more treatment options available. I feel it will be way better than where I am currently living - a fairly isolated place.

    I can't wait to see what is in store.

    Moving forward I plan to have this procedure done every 5 to 6 months. I will not be waiting any longer than this. I also realize the importance of rest. I do very little activities after my normal work hours. If I do I immediately see a difference in my health. I plan on continuing the VERY limited diet I am on that a naturopath has put me on. I have not seen much difference on this diet yet but it has only been 2.5 months. After 7.5 years on the IC diet I had food allergy testing done that showed allergies to some of the foods I was using to help 'ease' off flares. Ironic, right? I am hopeful that I will see a difference. I am also continuing to do the installations as per my doctor's orders. I do 4 a week. It does seem to help. On days that I do installations I do feel much better bladder wise.

    Overall, I am very thankful. I am thankful to have my IC much more manageable and stable. Although I need boundaries to help me keep this condition in check, I will not let this disease dictate my life. I will fight it.

    I can't wait for my new job to start in September and I can't wait to see how God blessed it.

    Many blessings and prayers to each of us.

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .

  • #2
    Re: An Update

    Hi I am so glad to read you are doing better.

    I agree about getting control of it and getting on with life. You may have to make modifications, but it is better than not making the changes, I call it my new normal.

    I am happy with that as I know how back things can get if I don't make sure I don't over do it.

    I am glad your going to get the Botox more frequently, hopefully this will mean you will get it before it wares off.

    I wonder why every 5-6 months, when I used Botox for headaches it was every three months.

    Where are you moving, pm me if you don't want to post it. Maybe we will be closer.

    I am glad you have gone for your dream job, you should not have to compromise in this area p, you gave worked so hard to get your life back.

    My are with you all. May you all find a way to peace and joy in your lives.