Double Booked: My Busy Day of Disappointments

c9de45f4-bb8b-405a-9fb4-a06de5453e36I went to another appointment at my urologist’s office.  It was originally scheduled as a bladder instillation, but last week’s instill gave me a massive Urinary Tract Infection (UTI).  We discussed my options, which were few to begin with and decided to continue with the series of instillations before moving onto one of the surgical options.  I was really disappointed to learn that there is only one other option for me beside the instillations and that is the dreaded hydrodistention, which I absolutely do not want to undergo.  I’ve already heard so many horror stories and very few success stories.  Any other treatment options would require me to be referred elsewhere and with my medical anxiety that is just not an option for me.  I left that appointment feeling so drained and disappointed.  Sometimes I just want to give up and accept the life of pain because at least that doesn’t come with false hope and disappointment.

3a242daf-1193-4aa2-8c7f-c72aae66f038My poor husband has had his hands full with me for the last month or so during this longest flare of my life, but I am happy to report that for the first time since April 20th I do not have bladder pain!  I started to think that the interstitial cystitis flare was never going to end again.  I was so glad to finally wake up without that pain and irritating symptoms that always accompany it.  I’ve been depressed, irritable, agitated and downright mad at the world.  That’s definitely not the way that I intend to live my life, but my Gods this flare took me to a really dark place.  I’m just so glad to finally be coming out of it.  If I didn’t have the love and support of my husband, I would never be able to survive this autoimmune life.

6d868a02-7771-444b-9717-4e6833efe8b3In addition to Urology, I also had an appointment with speech therapy regarding my esophageal dysmotility.  That appointment was another disappointment as the therapist mentioned that my problem is mainly in the esophagus and that she had doubts that these exercises would even help me with my problem.  She said that my gastroenterologist needs to order an esophagram.  I left there feeling like I was wasting my time even going to these appointments and it makes me really angry that my gastroenterologist is not taking my eating problem seriously.  I’m getting really close to asking my primary care to find me a new doctor, but I’m just not sure yet.

018b1708-36a3-45fc-b020-72d807cabd71This last week or two has been full of emotional turmoil and outbursts.  I’ve cried more tears this last week than I would ever care to admit to.  The life of chronic pain is, indeed, a difficult existence (to say the least).  I’ve found myself having a lot of trouble coping with the realities of my autoimmune life and it’s kind of been a hard pill to swallow lately.  Luckily, I have a group of amazing friends who also suffer with chronic illness.  These three ladies have really pulled me through some tough spots lately and I truly appreciate them in my life.  You just never know what someone is going through, and these ladies are the embodiment of love and light placed on my path to help me see my way through the darkness and I thank the Universe for putting them there.

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