Tag Archive | Liver Disease

Another “eye-cation” at “The Thornton Hotel”…

Well Hello My Pretties, and your big dogs too….

I had my Left Eye Orbital Decompression on the 7th of February. As is always, a pleasure.

My Orbital Decompression with Drs. Bobby Korn and Audrey Ko went as smooth as ever! I did wake up with some sort of gloved turban situation, but I was thankful for being safe and alive and finally having my left eye look somewhat like my right, which has recovered beautifully.

I’m not sure of the next steps, as I will be seeing Dr. Korn again in about 3 weeks, but it is already looking beautiful.

Couldn’t have more amazingly supporting doctors and nurses! All of them were there for me beyond the job. Thankful is not enough!

LOok at that turban situation I have going there!?! I woke up and looked in a mirror and was like, “WTF?” I swear it was attached to my eye.. That glove… WHAT IS THAT.

Anyhoo, so without further ado, here I am in all my facial glory… (Comments are necessary, please!!!!)

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Therapy Homework…??….

So, I now have been seeing Dr. Reyes for over a month and I have never felt more raw and rock bottom than ever before.

  • I thought I had this.
  • I thought I was done with the “daddy grief” and “daddy guilt”.
  • I thought I was ok.
  • I thought I had no more “coulda, shoulda, woulda’s”. 
  • I had accepted my dad, my mortality, my repercussions.
  • I thought I was no longer avoiding.

I was terribly wrong.

So I have been made to see inside myself. Deep. Dark. Twisty. Guilty. Self. Dr. Reyes dug deep and pulled out of me all the shit I’ve been avoiding.

Yep, I’ve been lying to myself and I didn’t even know it. I’m still avoiding. I’m still dwelling. I’ve still not accepted all the repercussions to what I created inside myself when my daddy died on me. Yes. See. You can see it. I can see it now. It’s the “I CREATED” and “DADDY DIED ON ME,”.

So Dr. Reyes gave me homework 3 weeks ago to ask me to define: ACCEPTANCE

She told me “Acceptance does not mean approval!” She told me to write, draw, paint, whatever, to define Acceptance. This is what I came up with:


Yeah. I know. I have zero painting talent. I at least tried to think out of the box and do something I wasn’t comfortable with to challenge myself. DONT JUDGE! It could be worse. It could be the beautiful toothbrush holder I made my parents when I took Ceramics my junior year at Point Loma High (GO POINTER BASEBALL – WOOT WOOT!).

The toothbrush holder that I so beautifully crafted, burned in the Cedar fires. I’m sure, to this day, my mother cries just a little every time she goes to brush her teeth! LMAO!)

At least I tried with the paintings!

So, back to my homework. I gave it to her and we discussed it. And she gave me an even deeper assignment. Define it and explain the ripple effects from the minute of my dads death and the consequences of it.

Dad didn’t die on ME. He simply died. Not my fault. Not moms fault. Not anyone’s fault. It just was how it was supposed to be.

When he died, I had nothing. My life was over. I didn’t know how I can live in a world without my dad in it!

I woke up that following morning and just started drinking. I drank myself all the way to end-stage liver failure. AKA, I’ll die without a liver transplant.

But this part of the story, you all have already read about

So let’s talk about all the REPERCUSSIONS that letting my dads death take control of my dark and twisty life.

  1. Drinking
  2. Drinking earlier in the day
  3. Drinking all day, all night, anytime
  4. Letting the ranch go
  5. Ignoring friends requests to go out
  6. Placing myself in a bubble and giving up on life in general: couldn’t work, gave up on my life of being like my dad in forensics, didn’t work, didn’t go anywhere
  7. TV all the time
  8. Crying, crying, crying
  9. Woe is me, hamster wheel
  10. Feeling sick
  11. Gaining weight
  12. No menses for years and not wondering or caring why
  13. Bed to couch to wine to couch to bed with wine. On a hamster wheel.
  14. Face and eye coloring became jaundiced and I didn’t care.
  15. Knowing something was wrong with me, terribly wrong, and hiding it from MY MOM, EVERYONE!
  16. Ignoring medical insurance and doctors.
  17. Just plain letting myself go.

So now let’s talk about the repercussions and ripple effects caused by the above, which in turn, caused my current diagnosis and the “DEATH THAT BECOMES ME”.

  1. After being without proper levels of oxygen for 2 days practically incoherent (no memory of any of it) and in an awakened coma, was damned near practically dead on my living room floor.
  2. Found by my mother airlifted from my ranch to Sharp Grossmont Hospital trauma where I was placed in a coma and strapped to my bed, apparently.
  3. Woke up and was told, while crying, that I was dying. My doctor wasn’t even sure I’d live a week at that point. Then it went to another week.. And so on…
  4. Moving from plain Hepatology department into the Liver Transplant Center
  5. Alcoholic Cirrosis of the Liver
  6. End-Stage Liver Failure
  7. Hepatic Encephalopathy (memory loss and speech impairment caused by extremely high levels of ammonia in my liver that makes me behave like I have a small form of Dementia)
  8. TIPS SHUNT placed in my liver to help relieve my portal hypertension and esophageal varices
  9. HX of Portal Hypertension
  10. Periferal neuropathy
  11. Aceties
  12. Situational Anciety/OCPD
  13. Weekly doctor visits of various kinds
  14. Constant blood tests
  15. Still living in a bubble. Crying. Missing my father. Blaming myself. Believing I’m a failure
  16. People feeling sorry for me or always wanting to help me
  17. The digging out of the holes I created
  18. The list goes on…

So I sit here and try to get motivation to keep on trucking along. This is a daily task for me. I have deep rooted guilt, grief and darkness.

I’m living just fine with my life, however, in all other aspects.

Life has returned and life has moved forward in a positive direction. I’m proud of the changes I’ve made. I’m proud of the work I’m doing. I’m proud of MYSELF!

Thank God I’ve met Dr. Dara Reyes. My dark and twisty is being pulled out of me. It’s painful and I fight it, but I need to figure all this out, get the puzzle of my life put back together, LIVE and….

Dance, 

Like there is no tomorrow,

In my underpants!!!

1 Year. Humbled.

(As spoken at today’s meeting. March 15, 2016 – Noon.

The Huddle on Goldfinch, San Diego, CA)

  • Thank you Anna… There is no one better to have done this today. Your guidance has shaped me. Any time I had questions, needed a reading, needed advice… You are always there. You are one of the most kindest, gentle and extraordinary people I am honored to call my “person”.
  • Mom, Sitsi Angela and Parino Joe… I just can’t make amends enough..
  • Mitch, you saved my life. #BestPrivateNurseEVER!!!
  • My family. You are #Everything!

It’s not as rare anymore, being rather speechless, but I really, honestly, have nothing to say…

Except, I will say this, Humbly. To everyone here at The Huddle and those not able to be at this meeting..

Your support and love, all of the things I have done this past year. I didn’t know I needed all that support until I truly realized I needed it. If you call upon, the answers will make themselves known.

It’s not just my sobriety.

All of you have helped me accept my new journey, my life diagnosis. You have taught me how to not avoid. How to define avoidance and what it means to have acceptance and freedom from avoidance. And friendship. True, real, friendships. New and  old.

And when I have or have tried, you helped me change that defect. You all hold me accountable. I have learned to replace the negative with positivity.

I am forever grateful and truly humbled. From then, now and the future. God Bless you all, I love you.

With deep humility in my heart and soul,

Amy

P. S., See, I told you Dr. Michel Mendler, Dr. Alexander Kuo, Dr. Sathya Pokala, Dr. Irine Vodkin, Dr. Yuko Kono, Dr. Albert Ding, Dr. Joshua Rubin, Dr. Sheri Rosen, and especially my Psychiatrist, Dr. Kurtis Linderman (feel very sorry and please pray for this kind man for listening to my malaise) and all the many nurses (especially you, Joanie Salotti – knock knock… I’m talking ’bout you Joanie… We have some pickle to eat!!) and support staff at Grossmont and my beloved UCSD Hepatology and Liver Transplant Departments. I did it and will continue to do so! #LifeChange #NeverStopWorking

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My Georgie the Tortie Can Mangia!

Check him out, chomping his food…

UPDATED!!!!! My TIPS Video/AA Birthday & I’m stuck on the 10th step!

So I had my appointment with #TheCardioGod Dr. Hamed Aryafar today. The heavens opened up when he walked in the room.. (You will see this when viewing the video I will add in this place when it finishes uploading…)

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It was, as usual, extremely informative and life-altering! I was told about what to expect, whether I can still drive, among other things. All in all, a positive result.

 

I then went to #TheHuddle to my home group (#AA) and lead today’s meeting. I haven’t been able to have this grateful task in a while due to me usually having to leave a bit early due to a doctors appointment and/or liver transplant support group. For this day, I am honored and humbled. I spoke of matters of the heart and understanding in the program. By matters of the heart, I don’t mean love and men or women, etc., I meant love and understand of all things while working the program. 

Ironically, this leads me to the 10th Step, with which I have found myself stuck on… 

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Chapter Ten, page 92, states:

  • Such a radical change in our outlook will take time, maybe a lot of time. Not many people can truthfully assert that they love everybody. Most of us must admit that we have loved but a few; that we have been quite indifferent to the many so long as none of them gave us trouble; and as for the remainder—well, we have really disliked or hated them.
  • Although these attitudes are common enough, we A.A.’s nd we need something much better in order to keep our balance.
  • We can’t stand it if we hate deeply. The idea that we can be possessively loving of a few, can ignore the many, and can continue to fear or hate anybody, has to be abandoned, if only a little at a time.
  • We can try to stop making unreasonable demands upon those we love. We can show kindness where we had shown none. With those we dislike we can begin to practice justice and courtesy, perhaps going out of our way to understand and help them. Whenever we fail any of these people, we can promptly admit it—to ourselves always, and to them also, when the admission would be helpful.
  • Courtesy, kindness, justice, and love are the keynotes by which we may come into harmony with practically anybody. When in doubt we can always pause, saying, “Not my will, but Thine, be done.” And we can often ask ourselves, “Am I doing to others as I would have them do to me—today?”

And continues, “Understanding and effectiveness. This is not an overnight matter. It should continue for our entire lifetime. Continue to watch for selfishness, dishonesty, resentment, and fear. When these pop up in our lives, we ask God to immediately remove them. We discuss them with our Sponsor or Friend in AA and make amends quickly if we have harmed anyone. Then we resolutely turn our thoughts to someone we can help. Love and tolerance of others is our code.”

So when one of my character defects appears during the day, I don’t have to take action based on that defect. I can begin to practice the 10th Step. And if I do act out on a defect, then Step 10 also gives me the tools to straighten out any harm I might have caused. Once we’ve gone through the process of spotting the defect, asking God to remove it, discussing the problem with someone if necessary, and making amends if we’ve caused a harm the book tells me now to turn my thoughts towards someone that I can be helpful towards. After all, the book does say:

“Love and tolerance of others is our code.”

This takes lots of practice but with God’s help and guidance, it can be done if we work at it. #WorkWorkWork

So, today was pretty incredible. I arrived to my meeting, early, and sat with Brock and Anna and caught up on their lives. We also discussed the cake I’ll be ordering from Costco for my 1 year birthday! Because, who doesn’t love #CostcoCake? Please consider attending on March 15th at noon at The Huddle on Goldfinch, if not for the camaraderie and fellowship, but hello…. CAKE!!

Quick #Assholio update… Status: NIL… #CUT

So I’ve been doing a lot of Big Book reading lately, and have begun to realize that there are new flaws I must work on in my life going into my 2nd year of #sobriety:

  • Transformation
  • Tolerance
  • Feeling “just ordinary” or “unheard” and the need to also be too vocal

Some of these new things, ok, all of them, were rather blatantly unseen by myself – of myself.

You see, we all have flaws. But it is how you choose to handle and deal with them is what makes the difference.

Anna brought up #Transformation with me due to all the changes I have made in my health, life and love. This will be next on my agenda to dig deeper into. I believe that for transformation, I must have #tolerance and #respect for others thoughts and feelings as well as keeping abreast of my own, equally.

So wow, yeah, that was windy! So, I must sign off and get that video uploaded.. Therefore…

#Bygones,

Amy aka #MotorMouth 

 

Another Hole I Must Dig Out Of..

Well, after a stint at the hospital and numerous tests, I’m newly diagnosed with Hypoglycemia… Which I was diagnosed with waaaaay back in 2001 after my Gastric Bypass.

Assumed it left the building. Oh no… because you know I just needed yet another Amy Ailment… I truly am becoming my father!!!

So now I’m testing my blood sugar and keeping a diary. It’s only been 4 days and I have no fingers left… With the exception of the right middle finger that’s currently out of commission, the rest of my tips are killing me… LMAO!

Anyhoo, I’m good, for now. I see the #CardioGod Dr. Hamed Aryafar on Wednesday for my Interventional Radiology Post-op. I’ll blog then.

 

 

The Heart of it all is PERFECT!!!!

Been incredibly busy for the last 3 days… Sooooo needed to blog it out but my weekend was so wonderful and fun that I just took the whole weekend off the Internet.

I had my NucMed Cardiovascular testing this past Thursday. What an experience! Anyone ever have a rest and stress test? It was soo fascinating! My heart rate was through the roof and I was laying down… So awesome.. I embrace new (to me) procedures and testing.

I got to Thornton ”Hotel” late thanks to the extremely kind people on the I-52 that seem to not to know how to cooperate and merge politely. AKA TRAFFIC!!! I thought all those years of making the new highway was to fix this problem!!!??? Guess not. Just another waste of taxpayers $$$! But that’s another day another blog all by itself. (Mental note: type blog on my social/personal life and one for “Lactulose” (that is quite a daily experience that you must all read about!).

I sat in the waiting room in Interventional Radiology and started to read my email when I’m called back. FINALLY, I get to enjoy the other side of the department. I get my IV placed and I go to rest on the couch until they need me for the first scan. I almost fell asleep and I was uber-lonely all by myself (boo hoo, don’t feel sorry for me…).

I got called back at 0945 and proceeded to lay down on this cute bed – it was awfully small and I asked how men and women in the bigger form stay on that thing. Look at it… It was just wide enough for my skinny ass!

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The Rest NucMed Scanner

But I totally took a nice 14 minute power nap while this scanner did it’s thing. Then around 1030, I was taken to my NucMed stress portion of my day. Now that was fun. I’m probably the only one who thought it was cool when all the injections went in and my body felt like I ran a marathon and breathing was hard (because of of the Lexiscan they injected to dilate my blood vessels to get to my heart).

To read how it all goes down, click here!

So I was allowed to finally eat at 1100 and I was a good little girl. I got myself some salad with chick peas and all good plant proteins as well as a side of brown rice and fresh corn (both with lots of butter that I made all the good things become moot!). It’s never a bad meal at the Thornton Hotel Restaurant (remember folks, Thornton Hotel is speak for Thornton Hospital. I cannot stress enough how gorgeous that place is and how it looks and acts like a 5-star Hotel! Excellent food, excellent people.

I finished and got back to the rest portion again and another 14 minute nap.

Needless to say, it was just a really fascinating procedure. And I just got off the phone with Joanie Salotti (my transplant nurse) who told me all the tests so far have come back perfect. Glad to know all my other organs and human “departments” are in tip top shape. It’s just my liver that hates me!

And now I’m much closer to the promised land. I have Transplant Support group this Thursday as well as my Paracentesis. Joanie (my Transplant NP) is scheduling my psycho/social psych eval (just to make sure I know the reality of the post-transplant care instructions and medications), the meeting with the transplant surgeons and my weekly blood work. I see the light at the end of the tunnel… finally! I have my “well woman” (aka OBGYN check-up for us seasoned women! Ha!) appointment next week as well as my PET scans. So it looks like I’m almost there… Then it will be up to the Transplant Center and UCSD for what to do with me now! 🙂

Lately I have been feeling rather healthy. I am running again and my aceties is keeping to a minimum (of course I will only know how well all my recent treatment changes when I have my procedure), and I’m eating more. Although /I do find myself forgetting to eat because I’m working on something or out somewhere. I need to work on that. I weighed in today at 128.7lbs and assuming am carrying 7-8lbs of fluid, that isn’t really good. I really need to focus on gaining weight. I have been drinking protein shakes in the morning, have yet to drink the one I prepared in the fridge today…. Bad Amy!

Being happy helps. I’m truly happy. I honestly do not think I have ever been truly honestly happy before. It’s an awesome feeling. I finally have clarity in my life, which really does help the condition to which I have made for myself. Positive inner reinforcement!

And I just got some mail. My wonderful Confirmation Godparents, Brian and Diana Johnson (along with their amazingly talented daughter Victoria (you catch her on Fox 5 News Weekends at night) and their son Brian and Cassie Johnson and their new beautiful baby girl Gracie)) sent me a get-well card and I am soooo blessed to have them in my life. Never in my life would I ever have thought that I would be receiving get-well cards. I always fielded them for daddy…. How time changes things.

Well, I must close for now and get working on my Social/Personal Life blog… Who knew I would again have a personal life???

Be healthy, wealthy and wise (and an organ donor!),

Amy