No one can hold my hand

Tomorrow I have my 1st kidney screening and I’m scared.  And you know?  I’m a big liar because there will be no positive post after this.  It’s late and I’m tired and I need to get this out of my head and get to bed.  I tried.  I tried to put on a happy face today.  I got up and I got dressed and I walked for 40 minutes and I went to Family Home Evening.  But my heart isn’t in it.  Because I’m so scared.  I want to be a survivor.  I can’t change anything about what’s going on.  I KNOW THIS.  I can only change my reaction to things yet THAT IS WHAT I AM HAVING SO MUCH TROUBLE WITH.

I have to go through this alone, the doctor appointments.  I can’t have anyone hold my hand.  I had those warts burned off my hand today that were just out of control.  I probably should have taken a picture they were so hard and disgusting.  Total over growths of tissue.  HELLO COWDEN’S SYNDROME.

I talked to Dr. L about a chemo drug (B something) but my lack of insurance won’t cover it so he wants to try some other stuff first.  But I CANNOT live the rest of my life having these 3 warts on my hand frozen off every 2 weeks, can I?  What is the option?  Huge MONSTER growths on my hand?  Then I really will feel sick.  I try to think positive because when I hear “rare disease” I associate “sickness”…but then I think, “Well, I don’t really FEEL sick!?” – but then I look at my hand, or think about my head and what’s in my cerebellum, or the healing of where I had the mole removed, and think….“Well, Heather.  You kind of are sick.”  REALITY CHECK.  That sucks.

And then here’s another slap in the reality check department.  The ENT I saw a while back for this thing in my mouth told me if there was something white or black in my mouth to let her know right away…because that’s a sign of oral cancer.  AND…on my tongue I have these bumps (papillary or papilulues or something) and they have just been chillin.  They seemed to ALL COME after my neurosurgery last July.  Well just today I noticed one (a new one) on the end of my tongue and it HURTS.  Bad.  I thought I just had eaten too much salt or something yesterday.  Then this afternoon I look at it and it’s white…not colored like the rest of the ones in my mouth.  And then tonight…it’s black/grey.  DEFINITELY not like the other ones in my mouth.

I see the ENT on Friday.  I was supposed to work on Friday.  Did I mention that I also have no job and no money?  I have anxiety and don’t have any IDEA how I am supposed to work and manage all this and my bills?  And life my freaking life?  I want just a WEEK with no doctor appointments?  Is that too much to ask?  WHAT IS WRONG WITH MY TONGUE?????????????????????????????????????????

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2 thoughts on “No one can hold my hand

  1. You are alone in your trips to the doctor, but not alone in your struggles. Remember that. Let it help you. My husband, who does not have CS had a growth like you describe on your tongue. The oral surgeon took it off. It was painful, unexplainable, but benign. Looking forward to hearing good news about the kidneys. Maybe we can plan a week long CS doctor strike… We are working it x2 here, but I am willing to try. Can’t remember the last time that happened. HANG IN THERE!

  2. I’m so sorry Heather. It’s scary and it really really sucks that you DON’T have someone to hold your hand. I’m not going to tell you everything will be fine, even though I know it will. I will just tell you that I’m thinking about you and I do believe the Lord will hold your hand when you are most scared. I think you are justified in feeling the way you do though. I am looking forward to hearing good news as well. Sure do love you!

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