updates

I meant to write yesterday but yesterday was a very bad day for me.  Today is a little better. I am guessing that an update about my doctor appointments is what everyone is curious about.  I will recap my last couple of days for you.

On Wed Jim's sister, Brenda, picked me up and took me to the clinic for my two appointments.  My first appointment was for Dr MacGregor.  He was supposed to take out the staples but I really wanted to know if all the draining from them is normal.  I still don't know.  They weighed me, 159 with my jacket and shoes on, and then took my blood pressure-110/58.  I have no energy-nada!  The doctor came in and had me get up on the table.  He looks at everything and starts taking out staples.  Pretty soon my hands are tingling, shoulders, ears; this is not going to be good.  By the time I let them know that I was lightheaded and dropping fast, he has taken out all the staples that he was going to.  He left 4 of them.  He pinched and pushed on my belly the whole time.  Added steri-strips and sent his nurse for some oj. I told him that this is how I have been and that I have no energy.  He just did the yep, un-huh thing. I ended up on my back for 30 min trying to come back around.  I never really got an answer to any of my questions. I don't know if all the drainage is normal, I don't  know how long I will feel like a wet noodle.  He told me that the vaso-blah-blah was normal and I shouldn't be concerned.  I think he was trying to reassure me that passing out isn't something to be embarrassed about.  At least that's what I made out of his responses.  He told me to come back in a week and have the other staples out. 

Instead of getting me up and moving me to another room for my wound care appointment, the wound care nurses came to me. (Since I was still on my back with a cold washcloth on my forehead)  Dr MacGregors nurses have gone and gotten Brenda and brought her back too.   Wound care came in, changed the bag, gave me some tips, told me I have a beautiful stoma, laughed about the toxic green color in my bag and sent in a prescription for supplies.  Which is good because I had one bag left.  She gave me 3 to take with me as well.  Brenda commented on my skin and how irritated it was and asked about pain.  The actual stoma has no nerves so it had no pain.  The skin around it is so very painful!  Not only is it raw, but it is eaten away by stomach acid.  It hurts to bend.  Like to lean forward and pick something up.  Yikes!

I got home and was ready to drop but my phone had rung steady the entire time I was gone.  So I returned phone messages and texts.  One of them was my daughter, who was at basketball saying that she had a voicemail saying my prescription was ready.  I called Sanford Healthcare Accessories because it would be easier to have them mailed to me. First, they have no record of me.  Then they finally find me and let me know that they have none of the supplies that I need.  I let them know that they called to tell me it was ready to pick up.  The girls was like, "yes, but we don't have anything for you".   How does that make any sense??  Do I want her to back order them?  I have enough bags to maybe get thru a week and that is only if nothing goes wrong.  Yes!  So I spend 30 minutes on the phone listening to her type and get the info wrong.  If something ever shows up, I have no idea how many things will be in the box!.  Another one was the clinic with my appointment.  They didn't have anything open next week because of Thanksgiving so she has me scheduled on Dec 3rd.  I mentioned that he said a week.  The receptionist told me that she checked with his nurse and this was the best they could do, but that if I had any problems I could call.  I actually laughed at her-rude, I know, but really?  I believe I said something snarky to the effect of "I usually don't have very good luck with that". 

I called wound care first thing on Thursday to let them know that all I had was 2 extra bags and none coming.  She was able to mail order me a bunch of supplies that should be here soon.  Otherwise I will be at the clinic with a very large mess.  Two extra, but she gave me 3 and I had one.  How does that end up as 2?  Let me recap Thurs for you.

Thur was not such a good day.  I got up, emptied everything and went back to bed.  The next thing I know I am leaking my bag of vomit (it is, you know) all over.  I scramble to the bathroom where I have already removed all the rugs.  I am going to have to shower.  The nurse put this bag on not 12 hours ago and my goal is to make them last 3 days.  I get what I need together and I sit down to try to take the bag off.  I have extremely sensitive skin and these things hurt.  On top of that, I have no skin under the adhesive because the acid from my stomach has eaten it away.  The bag is adhered by a large bandage and the part that goes around the stoma is thicker and works like a wax ring on a toilet.  Hurts like a BLANK!  I get it off and I get in the shower.  I hurry because what I have just gone through has taken most of what I have left in me. I start to dry off and my stoma "gobs" for lack of a better word.  I am still in the shower so I grab the shower head and rinse off.  I get out, and I am sinking fast.  Soaking wet, I am sitting on the toilet lid and my stomach is gobbing all over.  I have nothing so I sit and cry and try to pull my shit together. I get my hair wrapped up in the towel.  I get back in the shower and attempt this again.  I get cleaned up.  My skin at least, it's still all over the floor. I get a new bag on and disinfect the floors, toilet, counters, and anything else that might have stomach acid on it.  I throw on a shirt, go across the hall and collapse on my bed. 

I don't know how much time has passed.  Must be close to 2 hours and I move.  Only to discover that this bag is leaking too!  Back in the bathroom.  I am trying to get a new bag cut, the old bag off, and get my skin cleaned up and my stomach is throwing up all over the bathroom.  I haven't had anything except water so it's thin and projects.  I am literally going to have to Clorox this entire room!!  Keep in mind that every time I do this I have to take out the garbage and clean up the entire room.  It's exhausting.  Got it all cleaned up and took the towel off my hair, hung it up to dry and went to the couch to sit.  I'm  drained.  And I still haven't even ran a comb thru my hair yet.  Yep, it dried that way, and I left it.  It was 11 before I got a comb thru it.  My first shower was sometime around 6.  I went downstairs to put a load of laundry in.  Rylee is nice enough to carry everything up and down for me.  I discovered that my huge jug of soap has fallen over and ran onto the laundry room floor and down the drain.  There are a few loads left in it but darn it, that was $15!  I didn't have the energy to try to clean it up so it's still there.  Smells clean and the floor is concrete so it will wait. 

It's now Fri and here I sit.  I didn't take a shower this morning so I feel like I have a better start on the day. More energy anyhow.  I've been awake longer today.  My hair is gorgeous!  LOL!  Everyone calls and wants to do something or help me.  I'm ok.  I'm weak and frustrated but until I can get the nutrients from my food to absorb better, which I understand just takes time, there really isn't anything to do.  My sister asked about home health, but if they are scheduled on Tues and Thurs, my bag will leak on Wed.  It's just not something you can schedule or work around.  It's more like something you have to deal with.  I just can't figure out how to deal with it. 

How in the hell do people do this??  I know that people live with these things, but how?  If I ever have the energy to get back to work, do I bring a suitcase with me every day?  I won't be able to leave the house without a change of clothes, supplies and a full cleanup kit.  And if I happen to be at someone's house, is it ok to ball all the rugs up in a corner?  Especially if I have eaten or drank anything.   I'll put them back after I am done Lysol-ing the room.  What do I do if it leaks and I am at the grocery store or Walmart??  I don't want to get back in my car leaking vomit everywhere??  How do people do this?!?!?  The ostomy/wound care nurses tell me that I won't have the bag long enough to get used to it.  I don't know if that is a good thing or not.

I am running low on energy and it has been a couple hours so I had better eat again.  Keep in touch folks!