Saturday, March 15, 2014


I mentioned in my last post the health problems I've been having. They aren't letting up,  and I'm not handling it well. After a nightmare pain episode I ended up in the emergency room again last week, convinced my kidney was shutting down or I had a stone stuck. The Dr, a fellow "stone maker" had the mercy to give me a stronger pain medication,  but didn't order additional tests because the pain & symptoms I was having are typical for a person with chronic kidney stones.  I emailed my new urologist,  who is on vacation,  and pleaded to be seen by someone sooner. So, Thursday,  my mom took me to see a different urologist in the same office.

I read up on him. His specialty is in men's health and sexual dysfunction.  I had a bad feeling that my lack of penis might be an issue.

He pulled up a month old ct scan (this is important because I have literally had xray's a week apart showing no stones/10 stones.... that's how fast I make them) and told me that while I may have stones in my kidney, there is no possible way they are causing me pain. He told me that just isn't possible,  and sometimes people have unexplainable chronic pain that nothing can be done about. He referred me to pain management and suggested I need counseling.  (Yes, I know. That is why I see a therapist,  a psychiatrist and participate in two different support groups. Thanks though. )

He humiliated me, invalidated my pain and made me feel like a drug seeker. And the sad part? This is a common reaction from doctors who are unfamiliar with a condition or who encounter a patient who doesn't present with textbook like symptoms- and are too busy or self important to consider that just because something is outside their realm of experience, does not mean that it isn't real and it isn't treatable.

My life is hell right now. It hurts to move... and that makes everything so much harder. He may be right, stress may be exacerbating my condition,  but I'm doing everything in my power to try and keep moving forward. I need help. I need a doctor who, even if they don't understand,  is willing to research, do tests and try whatever works so that I can have a productive life.

I'm terrified I'm never going to find that. That I will be given pills to cope and then punished, looked down on, for needing to take them. That this will get worse and worse until I am bedridden or can no longer cope with the pain and take drastic measures.

I never thought I would be 34 years old and feel like I was 80... happy if I can make it through an entire shift at work just to come home and lay perfectly still until the pain (hopefully) abates enough to allow me to make dinner & help with homework.

I certainly didn't need another battle, but I guess I get one anyway.

Tuesday, March 11, 2014

The Veil

I have a birth defect called Medullary Sponge Kidney Disease.  Plain and simple it means I make kidney stones. A lot. I've lost count of the number I've passed, but it has to be upwards of 50 at this point. At any given moment I have no less than 20 stones in each of my kidneys. I also have a lot of scar tissue, some kidney and bladder damage and daily pain. It is hard to live with and I've had to fight tooth and nail to A. Get diagnosed and B. Find medical professionals who are at all familiar with the disease. I need pain management more often than I don't and I've dealt with several doctors thinking I was just a drug seeker. I'm currently on track to have a procedure done that would clean out my kidneys and hopefully offer me between 10 and 15 years of relief. I have to be patient and jump through some hoops, but I'm very hopeful I can live a more normal life sometime soon.

Sunday night I ended up in the emergency room in uncontrollable pain... the second time my boyfriend has had to take me. I'm very thankful for my man, who doesn't flinch as I throw up into an emesis bag and still manages to think I'm cute. Luckily, they know my case now and I was in, pumped full of extremely strong drugs, x-rayed and sent home with stronger pain meds.
And, as has become more usual, I had one of the dreams.

It usually happens when I am in between dreaming and waking. I hear a noise and I start to think that it's Jason. He's home! Part of my brain tells me no, that isn't possible.  But the other part of my brain says what if it is? What if he's just been gone for awhile and him dying was just a nightmare.  Sometimes it will be a phone call, him telling me he's sorry for being gone for so long. I start to get scared. I don't know what is real, and what isn't.  By the time I wake up fully I know it was just a dream. But for a few, terrifying minutes I honestly don't know.  It usually happens when I'm in a lot of pain or under a lot of stress,  but the emotional upheaval upon waking shakes me up for days.

I've not had any of the "visiting" dreams that many people say they have when a loved one dies. Maybe I never will.These dreams feel like nothing more than the longings of a broken heart.

Monday, March 3, 2014


I've always been a good researcher. Colleges?  (None of which I could afford or decide upon.) Check. Pregnancy? I read every book, blog & article I could get my hands on. Parenting? I read my Hip Mama's Guide to Teenagers 2 years ago, just as my oldest started to reach adolescence. I've read relationship books and self help tomes and books about spirituality. I have a veritable library of DIY & crafting books and can tell you all the steps that go into making a homemade rag rug (not that I've actually, you know, made one.). Cancer hit too quickly for me to do much reading but I devoured every caregiving/end of life care article my brain could manage to absorb. Widowhood & single parenting I've been able to delve into, as evidenced by the stack of books in my room with titles such as Parenting the Grieving Child, Lost Fathers: Helping Women Overcome Adolescent Father Loss, Widows Wear Stillettos and Wife, Interupted. I've spent way too much on books for my kids about grief and workbooks for all of us to work through should we ever decide to do so. Tips and tricks and how-to's, I hoard them like a dragons gold.

I have this compulsion that makes me think if I read everything I can about something,  I will be in control. Sometimes,  it really does help. Much of the time it just leaves me feeling simply inadequate.

A big part of this is fear. You may not be able to tell now, but I was extremely shy as a kid. I had a hard time feeling like I was good enough... I always felt like the outsider. Books were my refuge and gathering knowledge became a source of power. I would panic and say the wrong thing in real life, but in my own private world...  I knew things. I understood. Its always been the application of knowledge that has been difficult for me.

So, I've read all of these books, blogs, forum postings and articles about losing your husband. And many of the books, especially, end with a focus on self discovery. Whether it be a successful new career, advocacy or some other way of turning the pain of losing the one you love -and with it, a huge part of yourself- into something positive.  A new direction, a newfound strength. A purpose. And I finish each one and think What is wrong with me? Why am I still overwhelmed,  still so fragile? Why haven't I been inspired to do something great? Sonething Ellen Show worthy? What if that never happens to me and I end up just... stuck?

It boils down to my impatience for the vantage of time. I forget that these writers are writing after years of living with their new reality. Sure, maybe a few found the dedication and energy to pursue something new right away... but for most people it takes years. It takes time... of living in the trenches, of sitting with the loneliness,  of embracing the sadness. And I'm still there.

I'm still expecting the old me to come back. I'm still fighting the soul sucking, mind warping, judgement clouding black cloud that hangs above, always an inch away from a downpour. I still experience nerve shredding anxiety attacks. No longer daily, but often enough. I'm still exhausted,  physically and mentally,  all of the time. I'm still raw.

I wish I believed in myself enough to embrace the patience that I need to heal. I want to be good. NOW. And  I'm just Ok. It has to be enough. I'm doing my best, some days. Many days I'm just going through the motions,  putting on the mask and pretending to be better than I am. For now, that has to be enough.