Another week of doctors

 Howdy,

I guess I'll start with my eye doctor.  Well, my permanent plugs that were put in my eyes fell out.  Not so permanent, LOL!  Next step, autologous serum tears.  I give blood and the red blood cells and clotting factors are removed to make eye drops for me.  It's fairly successful, but it isn't covered by insurance.  I think that it's about $100.00 per month.  Yikes!!  Maybe this is where the term "bleeding money" comes from.  It's literal!!!

On to the Boston appointment.  It was okay.  My liver is almost in the normal range, which is good news.  My red blood cells aren't great, which could be from my meds and would explain my exhaustion.  Most of my GVHD seems to inactive. I'm still having some mouth issues, my GI tract acts up and the muscle cramps are crazy!  The anti-rejection medications are making my fatigue worse and that's what is causing the muscle cramps.  I get them in my fingers, legs, toes and back. When I told my doctor about the cramps in my back, he said that is unusual (of course it is) and those are large muscles so it must really hurt. LOL!  Yes, it does hurt. 

I discussed the serum tears with Dr Mac and I asked him if it was okay to use my own blood because, let's be real, it's kind of shitty.  We laughed.  We always have the serious part of the conversation first and then all bets are off.  My doctor and I always end up laughing.  Anyway, my steroids were lowered again, but everything else is the same. I'm all set for Halloween with my Nick Nolte hair, my funky looking eyes and my very round moon face. Uncle Fester has nothing on me and I don't even need a costume!  Boo!  I hope life gets back to normal fairly soon and I wish you all good health.

Peace, face masks, and Halloween! 😷🎃 

Oh CRAP!!

 Hey all,

I had my checkup at the eye doctor and the amniotic stem cells are not working.  My left eye is right where I started.  I went through 2 weeks of pain for absolutely nothing.  Saying I'm discouraged is an understatement.  There are definitely times that I kind of wish that I never had the 2nd transplant and then I think about all the things I would've missed if I didn't do it.  I'm really getting sick of this whole thing.

Anyway, now we are trying plugs in my eyes.  They don't hurt, but I can feel them in there.  I'm sure that is from my eyes being swollen all the time.  If this doesn't work, there is another thing I can try, unfortunately, insurance doesn't cover the last resort. (I need to read more about it before I try to explain the next step)  I'm really hoping and praying that the plugs and meds do the trick.  I've lost some hope that all this will ever be resolved.

Even though I'm sad, please know that I'm not giving up. I'm just allowing myself some time to feel sorry for myself.  It won't last long.

Peace and Face Masks😷

Eye Doctor and Boston last week

 I have some decent news for a change.  First the eye doctor.  My right eye is much better and my left eye, the bad eye, is healed from the cornea scratch, but it's still not great.  I was actually able to drive myself to the eye doctor, which was awesome!!  I was free if only for a few minutes.  Initially, I didn't drive because Lee was home for months and there really wasn't anywhere to go and then I didn't drive because of the pain in my eye.  I'm able to keep both eyes open now and with my glasses on, I can see!!  Yippee!  Anyway, we are trying the medications for another week and if that doesn't help with the extreme dryness in my eyes, we are having those plugs put in my tear ducts.  I'm willing to try just about anything at this point.

On to Boston.  All of my regular labs look good and my liver is improving!!  It seems like the GVHD is not showing any new signs and is improving most places, but it is taking time.  It is still visible on my face and chest and under the boobage.  My mouth is better, but my gums are still pretty sore.  My doctor lowered my steroids again and with any luck this won't cause a flare up.  I'm hoping that my moon face and butt and neck and mid section will go away and have been caused from the steroids and not golden oreos. Fingers crossed!  Damn golden oreos, why are they so delicious?!

Peace, Face Masks and looking forward! 😷

Rollercoaster Ride

Howdy,

To get you all up to date, I had the stem cells put in my eye.  The procedure was not bad, but the aftermath has truly sucked.  I don't notice the cells, it's the friggin lens they put in my eye that is brutal.  Actually, between the swelling and the pain my eye is barely open, so if my spelling sucks or something doesn;t make sense, it's not my fault!  I can't fucking see!!  I saw (well not really saw) my eye doctor to get everything checked and he said I'm progressing, so that was ok news.  I go back on Monday again and the devil of a thick lens should be coming out. This has not been a pleasant experience.  I should be used to unpleasant experiences by now, but this not seeing well bullshit has really dampened my life.  FU covid, FU GVHD, FU my big fat steroid face and lastly, for those of you who live in Danbury, FU John Oliver!  I just cracked myself up!😂

I do have some really bad news to share for those of you who don't already know.  My sweet husky Jimmy passed away on Monday.  My heart is broken and that's enough on that subject because crying hurts my fuckin' eye!!

Peace, face masks and hopefully better days to come. 

Saw Boston Doctor on Tuesday

Hello,

Well, my eyes still feel terrible and I hope the stem cell thing on Saturday helps.  Dr. Mac was surprised that the skin GVHD is still on my face and we both suspect that it may scar.  That's not really a big deal, because I can always cover it with makeup if I want to.   I gained weight from these stupid steroids and my moon face is very round.  I wonder if there is such a thing as moon butt, because I think I have that too.  I told Dr Mac that i don't have roid rage, I have roid weep.  I cry every day, so I'm ready to be off of this shit.

My blood pressure and heart rate are both up from all the anti-rejection meds, so I'm going back on blood pressure meds and my anti- rejection was increased.  I don't feel like I'm going in the right direction with this thing.  Honestly, I'm feeling a little discouraged.  The new anti- rejection (there are 2) is causing extreme exhaustion.  So...my eyes hurt so bad that I have to close them often and when I do I tend to dose off.  This is crazy.  It's very uncomfortable to be in the sun, wind and heat, because my eyes feel like they are on fire.  Same thing when I try to cook dinner and the heat comes up from cooking.  

Another tough side affect from my meds are muscle cramps, mostly in my feet and hands.  My fingers cramp so badly that they feel like they are dislocating. Last night I had to stop eating dinner because I couldn't hold my fork.  Chopping is a nightmare.  I need a chef!!  Sometimes, my toes will cramp and I'll drag my foot like Quisimoto.  I'm telling you, I am one hot looking chick with my moon face and ass, my scars, my sore red gums, my swollen flaming eyes, constant diarrhea and my funky fingers all while dragging my foot behind me.  What a sight I have become!! Woo Hoo!  Don't be jealous.  

I don't share this stuff to get sympathy.  I write this so other people going through something similar, don't feel alone.  I also feel like it's important to educate people on this stuff.  I know that I'll get through this, even if I'm a little battered and bruised.  It's all more fodder for writing comedy and believe or not, some very funny crap has happened.  

My fingers are starting to cramp so I'll fill you guys in after the amniotic stem cells on Saturday.  Please say a little prayer for my eyes.

Peace, face masks and health 👀😷

My eyes suck

Hi Everyone,

This will be a short post, because my eyes suck and it's difficult to see.  The GVHD in my eyes is not getting better so I will be getting amniotic stem cells in my left eye in about ten days.  They put the cells in my eye and then a contact lens over them for about 2 weeks.  It's kind of interesting.  Incredibly enough these will be the third stem cells, other than my own, to enter my body.  Can we all say freak of nature!!  Can we all say thank God for this science!!  

My other GVHD stuff is improving.  My mouth is better, but my gums are still sore.  I'm still having some trouble swallowing, the lower region is much better and my skin is improving.  I'm also heading to Boston for a recheck this week and hopefully my liver and kidneys are handling all these meds okay. 

I'm not looking at Facebook or my phone very much, because, honestly, it really hurts.  If anyone wants to talk to me please call, because it's easier for me.  My eyes have dry patches on the cornea so sunlight or any bright light really bother me.  Believe it or not, it's hard to cook because of the heat from the stove or oven and I have some double vision so chopping is an adventure.  I guess this is just another learning experience for me and hopefully this blog can help someone else going through something similar know that they are not alone.

Yes, I did do the Virtual Zoom Comedy Showcase last week.  I'm not thrilled with my performance, but the other comedians were absolutely amazing!!

Peace, Face masks, and Missing People

I emailed Matthias

Some people have asked me if I've been in touch with my donor yet and the answer is, kind of.
I sent an email to Matthias on July 5th, but unfortunately, I haven't heard back...yet.  I'm thinking that there is always the possibility that I received the wrong email address or it went into a spam folder or he changed his mind about getting in touch.  I'm also hoping nothing is wrong with him or his family.  My next step is going to be to write him a regular letter.  I don't want to be a stalker recipient, but a quick hello would be nice.  This is hard, especially because a part of me always thought that he wouldn't want to be in contact, but he signed the consent.  I'm not freaking out, I'm just very curious.  He doesn't owe me anything...I mean he saved my life, so he's awesome!  I really don't have any idea what is happening over in Germany with this shit show virus, so that could always have something to do with not hearing back.  Time will tell.

On a brighter note, Monday is my Zoom Virtual Comedy Showcase!!  There is going to be all new, hysterical sets from all of the comedians and as my awesome teacher, Christine O'Leary says, "We are doing the pandemic pivot"!  The advanced class had their Zoom Virtual Showcase last night and they rocked the comedy world.  Hopefully, we can do the same on Monday night.  Anyone reading this regardless of where you live, or if you are wearing pants,  can all be a part of this new phenomenon for only $20.00.  Yes, I said $20.00, and it's fun!!  Remember fun?  This isn't a show for the kiddos, so put them to bed early on Monday night, have a beverage, a snack and a little cuddle with your significant other or yourself and just sit back and laugh.

Peace, face masks, and laughter 😷😂🎤

Here's the info: