You know the old Kenny Rogers Song… “know when to hold em, know when to fold em…. know when to walk away… know when to run…” I swear….. when is it time to fold em and run? I have to make this post because if I don’t then I might literally go crazy….. I am not expecting anyone to reply back or coddle me … I am a big girl but I just need to get it off my chest.

Today we visited the Urologist and for some reason its always the most exhausting experience. Drive almost two hours in traffic… get there almost late… of course I have to go to the bathroom… drag Ky and the stroller into the only handicapped stall and try to pee… before I can get done she is climbing out of the stroller and has chucked her passy on the floor. pick it up and put her back in the stroller… now there are two women with literally SIX little boys in the bathroom and TWO strollers. One of the boys is crawling under the door of MY stall… and I try to get out and can’t even navigate my stroller out of the bathroom because there are so many of them… let alone try and wash my hands and the passy that Ky is now screaming because she doesn’t have because it was on the floor.

Get to the Urology Dept looking totally harried I am sure… they tell me they cannot file the Comission because I don’t have a NUMBER… well I am sorry I cannot produce a number that does not exist for you…. or a card… I am so sorry that the state of Ohio is so much more organized that us Kentucky Hillbillies…

On the way back to the room we see Dr. Alam and wave… assuming that since we SAW him that it wouldn’t be long before he came back to the room… and hour later we are still waiting. Passy thrown down and washed 6 more times. Dr. Alam finally enters… “so how’s it going?” Well if everything was peachy would we be sitting here?? Really, don’t patronize me. So we talk about all the things that are going on and he once again tells us how we need to do enemas because that is affecting her urological health also. Fine… convince Troy of that. Because me… I can’t do it alone. It is physically, humanly, earthly impossible for me to DO any more than what I am already doing right now. I am doing the job of 4 people already and about to loose it and adding something ELSE like enemas is NOT happening by myself right now.

So we go on to talk about how Ky’s bladder is one of the WORST that he has ever seen… yet her kidneys look better, her Urodynamics looks better and there is no more reflux. So numbers tell us that she should be getting BETTER yet she is not. There is still major debris in her bladder. Never an infection which defies all logic. So now on top of everything else we are changing catheters to a Caude tip (which is normally used for boys) and adding a saline irrigation in lieu of a gentamycin irrigation and still have no idea if that will help.

So to try the new 10Fr catheter they want to see if it will work so I yank off her diaper and Dr. Alam is SHOCKED at her rash… REALLY yes… it looks GOOD today. What the hell else do you want me to do. I have done everything I can. When you constantly have pee in your diaper you constantly are wet and constantly have yeast growing. That is a given… so now Alam also wants to add a vinegar rinse and hair dryer blow dry to each diaper change. Sure… what’s 15 more minutes that I don’t have?

So I finally get home and of course Ky sleeps on the way home… which was good … at least Troy didn’t yell at her all the way home to stop crying like he did all the way up there. Oh yeah.. he is sick – has horrible allergies- so he is being a complete b@#$ which is really helping things along. And of course he wanted to have a huge debate (read: FIGHT) all the way home about how the motility specialist will have the magic fix for Ky and that she won’t NEED enemas. Such pipe dreams. I learned my lesson after the Dr. Frim thing. No ONE person has the answer to Ky. NONE. Which is what Dr. Alam also said today. That we truly have no hope of our life ever really being any easier than this. She has SO many issues that we will always have to make sure that everyone keeps in contact. Because this seems to also be a part of my job… micromanaging the doctors.

Dr. Alam has to run out to a surgery and was not able to go over everything one last time and now the script has been called into the pharmacy wrong and I didn’t even know what to tell them it WAS … they assumed I would know.. I always know. This time I failed. I got overwhelmed… I didn’t write things down … and I have no idea what is going on.

Today has been one of “those days” but I think its the culmination of feeling all those things that have been coming and are finally hitting. Ky’s issues have taxed everything we have ever saved or had. I can feel my entire life slipping from under me. But honestly. I am proud that we have made it this far. What we have been through enough to put any person in the ground… and yet we are still here… still scratching and clawing our way through it. Hanging onto anything we possibly can. As of today… I cannot find much else to say other than… “I can’t do this”… I can’t do this anymore. Something has to break through or change. I need some help… with my house… with Kyleigh… the business. I can no longer do the job of 6 people. I am too tired, too stressed and stretched too thinly.

What do I mean the job of six people. In our world even normal things are taxing. Lets talk about Laundry. Kyleig produces 3 loads of “poop” laundry per week.. JUST HER. If she is having a puke week that number goes up to 5-7. I wash sheets every single day. Towels… everyday. Dishes. I just got done with three loads of those. One entire sink full of syringes. It takes me somewhere in the neck of 2 hours to do the dishes, wash, sterilize, put all the syringes back together, sort by size and type and put them away. And no matter what I do… the house always smells bad. Ky’s walls are permanently infused with poop stink. Not just poop… nasty bacteria gross awful smelling poop.

I have to vacuum every single day and most days mop. We go through at LEAST two full tubs of clorox wipes per week, two things of hand sanitizer, two bottles of antibacterial soap, laundry detergent… an economy size per month… if not two. Biz bleach for soaking the poop and puke out of her sheet- 1 box per week, Baby wipes, two extra large boxes per week. Diapers… our general cost of living has increased exponentially. And then gas. Troy figured up that we spend $23 in gas alone each time we go to Cincy. We have been there 4 times in the past month. That is if we drive the Accord. If we drive the Jeep that number goes up to $40.

I have been cleaning my house since 3 pm and it is actually messier than when I started because I did not stop my life this afternoon and sit down with Kyleigh so she has literally unloaded every drawer, every cabinet, every BAG, every bucket, bin and basket that she could get to. She can now open doors so I cannot even shut the doors to keep her out.

I just give up. I am about to say SCREW it to everything. I am just done trying and working and pushing to only end up further back from where I started. I can’t do it anymore. I cannot make something out of nothing. I cannot pay bills with no money. I cannot keep the laundry and dishes done. I cannot cook, clean, run the business, and keep on going with the stress of it all. I feel myself cracking into a million pieces. What do you do when you crack? What happens then?

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