The Monkey’s Fear Explained

I am making 2 special posts!  I know they are all special, but this is really more for me than for you!  That being said, I hope that this helps someone in some way because that is the whole purpose of writing this blog.  Before I go on, I would like to put a warning or two.  First, this is going to talk about girl stuff (lady-bits, feminine issues, feelings, possibly bacon) and second, this is going to involve personal information about myself that I am sharing because nobody I know has been in my situation, so that means someone will come after me with this very problem (I hope you find my blog!).  If you know me personally, be prepared to know me a little better!

Tomorrow I go in for an Endometrial Biopsy.  The endometrium is the lining of the uterus.  In normal functioning, this lining is built up and shed during every menstrual cycle if pregnancy does not occur.  I tend to think of this as your uterus crying because you just won’t have a baby!  Well, my uterus stopped crying about 20 months ago when my headaches started getting really bad.  As a girl with a 14 day period, I did not care much since that was just another thing that caused extreme pain.

After my decompression, I brought it up to both my PCP and my neurosurgeon, who both assured me that my body is under a heavy stress load post-op and it would be something we revisit at my 6 month post-op visit.  At that visit, the neurosurgeon said that this might be abnormal.  I had to change my PCP because my insurance changed and the new PCP said she would get me an appointment with the OB/GYN.  She never did, and I was not that concerned as I was still dealing with head pain, sleep disturbances, and so many other leftovers from surgery.

When I realized this new doctor was not referring me to anything (I have trouble with time, so it took a while) I found a new doctor.  Within a week I had appointments set for the OB/GYN, sleep study, and neuropsychologist.

Anywho, I went to the GYN and she is nice, she did a pap smear and as we talked (awkwardly since she was “examining”) she went over my recent history concerning periods (none), sex (none), STI (none).  When she counted back the number of months that I had been without a cycle, she was in disbelief that I was so nonchalant about it.  Well, I hate periods, sorry!  I don’t like bleeding for a fortnight while my life-force exits my body at an alarming rate in the most painful way it can muster.

She then explained to me that one of a few things could be happening:

• I could have and issue that is keeping my body from producing a lining each cycle (hormone issue)
• I could be producing and keeping the linings from each cycle (endometrial hyperplasia)
• I could have an alien growing in my abdomen (that was my theory)

Next, she gave me ten days of Medroxyprogestrone which is supposed to rouse the sleeping uterine and provoke it to a state of intense fury, causing an awful period, but helping to re-establish normalcy in the menstrual cycle.  I took them.  I became a monster.  They opened up a floodgate of emotions and memories that have forced me to seek psychological help (but that’s another day’s blog, ja?) but my uterus stood firm in it’s position that it was not working, nor was it having any of this silliness.

During this visit, the last thing she did was make two appointments for me.  One is for external (pelvic) and internal (vaginal) ultrasound so they can see why my uterus is so ornery.  I don’t know if you have had the pleasure of an ultrasound yet, but they are usually portrayed as beautiful interactions between a mother and her unborn child.  I have had a lot of them on various parts of my body and so I am a little jaded.  They use cold gel to ease friction and to get a better signal.  It doesn’t have to be cold, it just is.  The excitement doesn’t even exist when you know they aren’t looking for a bundle of joy, they are looking for a problem, a clue, an answer.  You have to drink half a gallon of water an hour before imaging because with no baby there to enlarge your uterus, you have to enlarge the bladder to push it forward.  As they push down on the abdomen looking at the different parts of the uterus and ovaries, they are pushing on your bladder…the one holding a liter of water.  That’s just the external one!

The internal  one demands that you lay all of your shame on the table, beat it with a hammer, and throw it in the trash.  You get to lay on a table, but this time, you get stirrups!  You know what that means!  Then they will take a “wand” that is about 10″ long (at my last one) they put cold gel on it, then they are kind enough to hand it to you and tell you, “insert this into yourself” while they just kind of stand there.  Then, once they think you have it in far enough, they take it from there and push it right against your cervix.  You know how you like when that little gem is annoyed.  Nothing about it feels right, however, you do it for the sake of answers.  Honestly, these are my perceptions but the doctors, nurses, and technicians are very professional.  But, after they are done, they give you a towel and tell you to clean yourself up, so, you know, it’s weird.

I have that appointment in two weeks.  It is the appointment tomorrow that I am much more concerned about.  I have to get this endometrial biopsy.  You might be asking why I have to, and that is a fair question since I am putting it out there.  I have filed a disability case and because this did not start happening until the headaches became bad, it got lumped into my symptoms.  In order to make the best case for myself, I have to go to every doctor’s appointment and I have to follow every order, referral, and recommendation to the best of my ability.  I have to cooperate with my medical team and show that I am not faking my disability or refusing treatments or assessments that could be helpful for my recovery.  This was a written recommendation and referral and so I have to follow it.  This is common for a lot of people who are in disability claims and I think a reason a lot of people get denied is because they don’t go through the dog and pony show.

Anywho, I have done some research on this type of biopsy and I will be upfront and say that I am more scared of this than I was of my brain surgery.  I knew that I would be asleep and then heavily medicated during and after my neurosurgery.  With this procedure, apparently, there is no medication.  They told me to take some pain killers an hour before I come in.  (From here is where my reading and imagination take over and it goes into straight 3rd person.)

Then, you undress from the waist down and get on a table with?  STIRRUPS!  Stilted conversation will take place as the doctor gets her gloves on and does a manual exam to verify the position of the uterus.  Then, she will grab a speculum and insert it into your lady-bits.  If you are lucky it will be the loud plastic type that pop and give you a heart attack.  If not, it will be the old-school metal kind that are just above freezing and feel like they are cutting you.  Then, she will bring out the tenaculum which is the speculum’s lil cousin, and it will clamp your cervix open enough (hopefully) to get the pipelle up and into the uterus.  If your cervix won’t open, then they will use dilators to force it open enough (FORCE IT OPEN) to get the pipelle through.

I know pipelle sounds kind of cute, and it is.  It is nothing more than a thin tube with a piston inside which creates suction when pulled back.  She will use this to scrape and then suction cells and material from the uterus walls.  I hear this is like being stabbed, burned, and beaten all at the same time.  If you are lucky (please, be lucky!!) she will get enough material to get conclusive answers.  If not, then you will have to go back and get some more of this royal treatment.  If they do find an issue, you might have to go back for some more.  If you are super lucky, your uterus will grab the hand of the doctor and threaten their family should they ever decide to darken it’s doorstep again and then you and the uterus will make a pact to never bother one another again.

I am not sure how this is actually going to work out for me as there are various ways of completing the biopsy and I hope that it goes smoothly.  If you made it this far, I hope you got a laugh.  I am seriously scared of this procedure and just this exercise in writing it out has made me feel a little better about it, so expect another blog either tomorrow (if it is not so bad) or by the end of the week (if I am dying of pain) and I will tell you was actually happens during the visit and hopefully I can help calm your fears.  But, if I happen to make your fears worse, sorry, it is all about transparency around here and I am going to be honest if it feels like they are killing my lady-bits.

Now, go enjoy the freedoms afforded to you by the men and women who died serving this country!!

Who Is The Monkey?

My head hurts.

It is pretty hard to think beyond that.  I might need to accomplish something, but who knows?  I would love to say that I care, but I don’t.

I am caring a lot less about a lot more things.  I am trying less.  I haven’t even picked up my ukulele in a week.  Why bother?  What is it going to do for me?  It makes my fingers hurt.  I do love it, but it pales in comparison to when I could sing.

So, I am looking for a psychologist.  I have been referred to a PhD level psychologist because I had a traumatic childhood and now I have a traumatic adulthood.  I am having trouble dealing with the changes in my life and I am going to spill all the juice.

I don’t know where I belong.  Everything I have worked for, for so many years, is wasted.  I have nowhere to wear all of these fancy recital dresses.  I haven’t picked up my classical guitar in almost 2 years.  I can’t play it because it hurts my neck and arm, then my fingers stop working.  I can’t remember a lot of information.  I used to feel like somebody.  I was Michelle, UPS employee, student of Music, Art teacher for the county, singer with the mass choir, glitter princess, backup-on-your-track singer, piano plunker, and so much more.  There were the things I used to define myself.  They defined my talents, my capabilities, my indulgences, and my loves.

Out of that list, I still play in glitter when I have a reason.  Now, I am Michelle, bearer of headaches, carrier of pain, she who lies down a lot, the angriest woman, she who gazes at the past, mourner of memories, the one who can’t let go.

Why hold on to such mean sounding titles?  because without them, I just don’t know who to be.  I don’t know how to be Michelle.  What most people don’t know is “Michelle” is the persona I created when I decided that Ellisa had taken too much and could no longer deal with life.  Ellisa had taken abuse but she had determination.  She worked 2 jobs in high school, she had plans, and even when those plans changed, she just went with the flow.  But, Ellisa was no fun and had a cold edginess to her that was a bit unappealing for a teen, so, Michelle was born.  For a while, both inhabited the same space.  Ellisa worked hard, studied hard, went to the gym.  Michelle partied hard, was super intelligent, and looked great all the time.

After Tony was murdered, Ellisa died.  Michelle took up the grim work of burying the corpse in the back yard of my mind and planting roses on it, then assumed the identity totally.  She moved on, creating a full persona that was everything Ellisa wasn’t.  Michelle LOVES being the center of attention, she loves when people fawn over her, she loves commanding a crowd.  In the end, a grand façade was created that made Michelle look like she had it together.

Then, when all of the foundational work that Ellisa had done so many years ago was taken away, Michelle began to crumble.  Ellisa, had the work ethic, always had a job.  Michelle relied on that resume Ellisa created.  Not that it matters, my body is failing and I can’t work right now.  Ellisa spent hours learning to sing opera, practicing piano, clarinet, saxophone, reading music, Michelle just took that foundational knowledge to the next level.  Now, I can’t even read two staves at the same time to play piano, and when I was still able to, my fingers would not function properly.  Michelle just rode on some coattails and now is unable to cope with life because she realized that she created nothing in herself, she only tried to make it a little better.

Now, I have nothing.  No true talent that can be carried out daily for 8 hours to make a living.  I have gained enough weight to house both Ellisa and Michelle.  I have gained a self-loathing that is unimaginable.  I always thought I would love me to death forever, but nope, right now, I would walk away from me if I could.

Even my life as a Christian is suffering.  If I believe the Bible, then I know that suffering is going to happen.  Yet, I am tired of suffering.  I have done it for so long.  I worked so hard so it wouldn’t be this way as an adult, and now it’s worse.  As a minister, I walk with others through their suffering, and while I am glad that I can help ease the burden of another, I am dying under the weight of my own.  Then I ask God, “is this what you want me here for?  Is suffering going to be my story?  Do you really expect me to live this way for 5, 20, 40 more years AND stay a Christian?”  I don’t want to live my life this way and as I sit through day 3 or 4 of this current headache, I begin to lose hope that God has anything nice planned for this life.  It is a real possibility that I will spend the rest of my life in pain that doctors can’t touch, why is God ok with that?  Why am I not ok with that?  Especially if other people have to go through it?

That is the difference between Ellisa and Michelle.  Ellisa would just take the suffering, like she did as a child.  She would silently build her resolve to never let this ruin her heart, never let this block out her sun or steal her hopes.  Michelle crumbled.  Michelle has no substance.  Michelle can’t even confidently turn to her maker and believe that something good can happen.  Instead, I wake up every day and brace for the next headache, the next appointment, the next diagnosis, the next piece of bad news, the next weight to drag me down further into the ocean of my misery.

All the while, God’s like, “you haven’t drowned!  Keep going!”

I am tired.  I don’t know how much I have left in me.

Right now, it is sink or swim.

Today, I choose swim.

Tomorrow, I will decide again.

The Problematic Monkey

I recieved a Neuropsychological evaluation a while ago and I recently got the results.  It was about 7 or 8 hours of all different types of tests that involved drawing, writing, pushing buttons, remembering, associating, strength, and all sorts of things.  It would take me pages to explain the whole report, so I will stick with the few portions that stuck out to me and underscored an important point as to why Chiari needs to be studied more.

The first thing that struck me was the behavioural observation saying I was, “polite, cooperative, socially appropriatw, able to establish and maintain good rapport.  Affect was congruent to context…Had a careful, efficient appropriately meticulous approach to test taking, and was on task througout testing…appeared motivated and cooperative during testing. Subjectively, she was talkative and somewhat tangential.  No overt anxiety, frustration, or resistance were observed.”

How nice.  I am able to be a polite member of society and I am not stoic when I interact with people.  I took the tests the way I was taught to take a test, quickly and efficiently.  I knew that I only had a certain amount of time to complete my testing, so I didn’t dawdle or take my time.  I pushed through my headache and did what had to be done.  I suppose I am talkative and tangential, I have no argument there.  Then I read the last line, and my eyes began to burn with anger.  Without going into detail, I lived a rough childhood.  I learned that when someone told me to do something, I needed to do it and pretend to enjoy it, get it done fast, and do it right, AT WHATEVER PERSONAL EXPENSE.  This man, this Ph.D. level clinical psychologist couldn’t see how stressed I was about this whole experience?  Was the environment I was raised in harsh enough to teach me to hide my stress level from a man who sees hundreds of people a year?  I guess that just makes me sad (inside apparently, since it doesn’t show).

The next thing that stood out was the interpretation of the findings.  Really, just the numbers:

• Intellectual functioning- 95th percentile
• Verbal comprehension- 98th percentile
• Perceptual reasoning skill- 87th percentile
• Working memory- 50th percentile
• Processing speed- 96th percentile
• Intellectual capacity- surpasses 99th percentile

I didn’t know how to take this. I see these numbers, and for the most part, I should feel proud of myself for functioning so well with a headache and under so much stress.  Yet I find myself disppointed, as I am not used to scoring this low on anything measuring my cognative function.  Working memory had to show out and just be low and ugly.  Intellectual capacity means nothing if recall can’t occur.

On the plus side, he thinks that once I deal with some pent-up emotioal trauma, I will better be able to manage my physical symptoms.  That is wonderful.  On the down side, in order to do it, he recommends Ph.D. level psychological therapy which means digging up and reliving things that I buried in the back yard of my mind years ago.  I don’t look forward to that. In fact, it scares me.  When I moved to Nevada and started using my middle name, it was because I no longer wanted to carry the burden attatched to my first name.  I made a concious decision to think about the past as little as possible, and now I must make the decision to talk about it with a stranger.

This is all really so I can have it for my disability claim.  I have to vomit up my past and wallow in it and honestly, I am just scared that I don’t know what will be left inside of me when all of it comes out.  The pride in me says just walk away, find a new life, disability isn’t worth having to go through all of that again.  I hope I am strong enough to go through with this much needed step in my claim and in my road to normalcy.

The final thing was the diagnosis; mild neurocognative disorder (MCD) secondary to multiple medical issues, and exacerbated by psychological issues.

I have done a lot of reading and research (most of which I don’t remember (haha, brain!) but while the doctor suspects that with better sleep and some speech and language pathology I may improve my recall, that runs contrary to everything that I have read about MCD.  I also freely admit that I am not a doctor of any sort, but I also have a pretty large intelelgence capacity, so I trust my findings thus far.  In fact, so far, everything has said that there is usually a decline in function over time.

Before I decide to trust in this or that, I will just make the appointments and go to them.  In the end, I am a mom who is responsible for showing my daughter that when the going gets tough, the tough gets brass knuckles and wrecks the place.  I will just continue to pray and go to my family for support while I go through this long and difficult process of cleaning out the darkness that has been hidden inside of me for so long.

Overall, I was disheartened by the report because it allowed me to see why other people think I am fine and why doctors think I am problematic.  I know how to be a social chamelion, I hide stress very well for short periods of time, I know a lot of words, and I am able to understand complex theories and ideas.  They see all of the positives, I see the negatives, I constantly have to hide how I feel, I can’t recall those words at times, and I can’t remember all or even most of the wonderful things I learn.

If you find yourself in this position I know it is frustrating.  I can only hope that sorting through skeletal memories will help me move forward with a more healthy and positive outlook on my life and that I will be taught coping skills that will allow me more autonomy in my life.  I encourage you to not let your diagnosis scare you away from recieving help you need.  Of course, if I didn’t need it for my disability claim, I would not be this gung-ho about it, but I already knew that since the accident, my grip on my emotions has been tenuous and I had already been trying to get an appointment with a qualified psychologist.

Don’t let anyone shame you for seeking help for your emotional distress.  That does not make you weak, or terrible, or anything other than a smart person.  If your heart isn’t functioning optimally, you can’t live a good life and you will seek treatment for a better quality of life.  If your emotions or thoughts do not function optimally, you can’t live a good life eaither.  Something will always be off.  Wrong.  Messed up.  Whatever.  We deserve better than that.  We deserve to be happy.

The Monkey Lost Her Bananas

I am currently sitting amidst a pile of laundry that never quite gets finished.  It gets clean, most of it is folded, some of it put away, interest is diverted, it’s over.  This is a struggle.  

I don’t know why.  I would blame my Chiari, as it makes everything so difficult all of the time, but really after reading my neuropsych eval again and again, I think it is depression.  I think I just don’t care if it gets done.  It doesn’t matter, except then I have to listen to people’s mouths about it.  They have every right to complain. Laundry isn’t that hard.

Yet to me, it is such a daunting task, I could cry.  I might cry.  I would cry if my daughter weren’t in the same room.  She would then want to know what is wrong.

What is wrong?!  Where do I begin?!

1. There are so many clothes
2. A thousand towels
3. I have to get a uterine biopsy
4. My brain is plotting against me
5. When you leave, I will be alone
6. I weigh too much
7. I am always grumpy
8. I lost my identity
9. I lost my wallet…again
10. I miss working
11. I feel useless to society
12. I miss having my own home
13. I miss feeling productive
14. I don’t feel pretty
15. I need a cpap
16. My hand goes cold
17. My foot goes numb
18. I hate feeling emotions
19. I let my coffee get cold
20. I miss school
21. I would have graduated
22. I could have a career
23. I will amount to nothing
24. I am nobody
25. I miss my brother
26. Why did he get to die first
27. Why couldn’t we die together
28. Why did I make it out of surgery
29. Why does God allow all this
30. When will He relent
31. Why do I bother with ministry
32. I do love ministry 
33. I could help people and get paid
34. Would it still be ministry
35. Why am I always so sad
36. I wasn’t always this way
37. I used to be different
38. I am no longer Ellisa or Michelle
39. Who am I
40. I don’t like me
41. Other people like who they think I am
42. I just wanted to grow up and be productive
43. I didn’t want to be this
44. I feel so insignificant
45. The praise of people means nothing
46. In fact, it is less than nothing
47. I could just walk away
48. Leave everything
49. Never look back
50. Find some other life
51. Be some other person
52. I always wanted to be Susan Smith
53. She is probably interesting
54. Not too pretty
55. Very intelligent 
56. Lives life to the fullest 
57. I would need to clear out my savings
58. I have no savings left
59. Everything is gone
60. I have nothing but a few items
61. I have a great family
62. I am their burden
63. It is killing me everyday
64. I pray God takes away their burden
65. I still wake up every day
66. I pray God gives me rest from this life
67. I still wake up every day
68. I pray God takes away the nightmare that is my life
69. I still wake up everyday to the same thing, only advanced another day
70. I try to help other people when possible
71. For a brief moment I can forget my life
72. Then I have to come home to my life
73. I pray for other people, God will honor those prayers
74. I pray for myself and nothing
75. I hate laundry

So I would just say, “nothing” and go on about life.  The little stuff doesn’t seem to matter because the big stuff is just swirling around in my head all of the time.  

I am trying to get to the right doctors, but my insurance makes this almost impossible.

The worst part is that I am a Christian.  I believe my Bible.  I am a minister.  I am expected to put on my happy face and do whatever it is that needs to be done with a smile and always be doing wonderful.  People will say that isn’t true,  but go tell some church folks your aren’t doing well, see how they respond.  You might be told that someone is dping worse than you, or how can you complain when Jesus does on the cross, or whatever.  And on some level, they are right.  

I encourage you to seek help when your brain cannot handle your life.  Don’t let your pride, your family, or your chirch tell you any different.   You deserve to have the help you need to become the best person you can be.

The Monkey Inside…The Smaller One

So, I have been on a mission to lose weight.  I have done all the normal things, started drinking more water, watching and recording what I eat, reduced my caloric intake, changed the types of carbs and meats, lowed the fats, avoided more sweets.  I managed to lose 20 pounds!!  YAY!!  So happy!!  Much Joy!!  Then, I hit a plateau.  I thought a little more effort would help, so I increased the weights and cardio duration at the gym, I made sure to walk up and down the steps when ever it was possible (sometimes I have a lot of stuff to carry) and I walked as much as I could while running errands (or “walking errands”).

So, for three months, I struggled.  I avoided eye contact with myself in the mirror because it has never been this hard, but I have always been able to do so much more.  Finally, I made it back to my doctor to follow up on some other appointments and I told her that this was just not going to work for me.  I am beyond “unhappy” I am “disgusted” with what I see in the mirror and what I see as my own failure to rectify it after this much effort being directed toward it.  So, we discussed several options, and we decided that I would go on a medicine called Topamax.  It is used for migraines and for seizures and so we were hoping that it could be helpful in preventing or lessening the occipital headaches.  A side effect or off-label use is appetite suppression, which is what I have previously used it for.

We also decided to change my caloric intake since I cannot increase my workout intensity beyond the current level (for a while).  I was around 1800 and we went to 1300 calories a day with a 40-30-30 carb-fat-protein ratio.  It has been six days.  I lost four pounds.  Normally, I would be super concerned, but I noticed that the edema in my legs is gone and I have ankles again so, probably a lot of water weight is gone.

The biggest help in this journey has been a kitchen scale and religiously weighing everything.  I have learned that what I thought was a portion could feed a family in some cases.  I just ate 77 grams of thin cut pork chops.  That is around 3 ounces and in most cases, I would have had it with a potato or two and butter and a salad with dressing and a roll.  I am actually satisfied.  I had a lot of vegetables and some fruit earlier today and I hit all my macros and my calories.  Two weeks ago, I would have turned this 89 calories into 600.

Of course, it is not always easy and there is a lot of preparation involved in making sure that I have food around and able to easily be prepared that fits into my needs.  My family is not on the same eating plan as me, so now I only cook for myself and that gives my daughter room to expand her own skills in the kitchen, so it is win-win.  I was a little jealous of their linguini tonight, but now that I am full, I can’t say that I mind much.  I don’t feel bloated or overly full, and I like this feeling better.

Sometimes, we have to make some serious sacrifices to get the results we desire.  There is a Michelle deep inside of me that longs to get out and run around Las Vegas again, but she doesn’t feel confident in this skin…because there is too much of it.  So many chins.  I am willing to count my calories and deny myself so that I can feel good about myself.  I can treat myself without going overboard and finish my day strong.  I can become what I want to become and so can you, you just have to be willing to tell yourself “no”.  On Instagram, I use the hashtag #littlechoicesbigchanges and it has become my battle cry in the kitchen.  Every little choice I make daily leads to the big monthly and yearly changes in my body.  Lets make some good choices.