Its a wild Wednesday

March 29th update. Today was a great day, did a little straighting up in my reading room. That made me feel really great as I stand in the doorway looking in the room. Today I actually got my wound vac put back on, we are also monitoring the top 2 tunnels as it is possible there is infection in there. I mean really, every day is an adventure of never knowing what I am gonna find when I take the dressing off. Right now the drainage is a yellow color, oh my...... As I lay on the couch stretched out, I have to clean my belly button before we put the wound vac back on. I look at my belly and say I am sorry, but it is looking good if only the tunnels will heal up. The pain is still here not as bad but still letting me know I still have issues. Lol I think I will always have issues. My home health nurse comes in and lets me know the docs are good with us putting the wound vac on for a couple of days and then letting my skin rest. I wish I could have it on 24/7 so the tunnels will here faster. Now I may have to have the wound vac a little longer than I thought. I am ok with it if I have to keep it a little longer. I am trying to stay positive and focus on today. So we are gonna keep the wound vac on today and see what my skin looks like on Friday when we take it off.------------------------------------------------------------------As I sit in my recliner eating pringles, I think about being strong, pushing through, surviving. Most days I will do that, most days I make it through. I will let you in on a secret, I don't see me that way. I just try my best to make it through each day. This is the second major medical journey that I have been on. I have been through minor medical journeys since the first major one again I just push on. Its the only thing I know how to do. Now don't get me wrong I have bad days. The first medical journey I wouldn't allow myself to have any bad days. It was during the minor journeys that I realized its ok to have bad days just don't stay there. This current medical journey I have had bad days and I allow them, but only one bad day. I would text a friend and would list what I didn't like then just kinda chill on the couch for the day. The next day I would wake up and everything would be ok. I would be able to have the strength to push through and have a better day. The bad days that I have are few and far between and I have learned its actually healthy to accept the bad day when it happens as long as its only one. If you start to have more bad days in a row then I would suggest you talk to a close friend about what is going on. When going through a medical journey and having too many bad days is never a good thing. You can not fight the bad days and then have the strength to fight the medical journey as well. My hope as you read my updates is to bring encouragement and let you know you can make it!!!! Peace out

Just another Tuesday

March 28th update Good Evening, yep it's that time again. Today was a decent day, nah it was a great day. I had to change the dressing again today, the rash is just about gone and that may let me get the wound vac tomorrow. Which might be a good thing, I ran out of the packing strips today. The pain has been letting me know today that I still have a wound that is not healed. I am considering heading to Johns Hopkins and see if I can just admit myself for daily testing for the rest of my life. Too many rare disease and too much happens daily when I am on the medical journey. I mean I really would be ok with that, maybe take a 2 week vacation to come see everyone. When I went to change the dressing there was a different color draining so of course a text was sent to my super hero, my home health nurse. We shall see what she says and she will be by tomorrow to check out whats going on.-------------------------------------------------------------------There are times where in the evening I think I need to get ready for bed so I can get up and go into work, it takes me about 5 minutes before I realize I am still out of work. I know it's crazy because I have been out for a bit now and when I sit in my recliner I will some times forget that I have a wound. Today the pain has reminded me most of the day. Also I am ready to get back to work but my body says nope not right now. So I get comfy and decide what I am gonna watch on tv and relax. There are times during the day that I have to remind myself what day it is. I will say I have learned to take each day as it comes and not worry about tomorrow. I am getting better at that. So tomorrow as you go about your day just focus on today and what you can get done and then do one thing you want to do!!.

How do you sit?

March 27th update Good evening. Today I had an eye appt, it was a 3 month check-up to see if my eyes had gotten better or not. See I have a genetic eye disease called Fuch's Dystrophy, it causes your cornea to swell which of course affects your vision. Great news the drops are helping so much my right eye is back to 20/20 and my left eye well is my problem child. I can finally get new glasses. No transplant for this girl right now but eye drops are for life. Anywho I will have to do a post about that another time. As I was driving to the eye doc I was having some pain around my wound from sitting straight up. No big deal, we gotta keep going. My home health nurse stopped by this afternoon and we decided we are gonna leave the wound vac off one more day to let the rash heal even more. My home health nurse will send a message to the doc to see what she wants to do, pictures are included in her message. Some times you just can't tell a person how bad it is, but pictures really do make a difference. So now almost my entire belly is covered in medical breathable tape. The tape isn't anywhere close to the wound or the Destin. We have learned to move the tape around so my skin doesn't get use to it in the same location.I am ok with the great news from early this afternoon, as for the wound well we are doing all we can, that includes prayers, cremes, rest, air, new packing strips,different tape. ---------------------------------------------------------------------------------------------------------------- As I sit here in my recliner Indian style mind you watching the news. I think about how I sit and then when I get up I have to hold my belly and stand a second so the pain will go away. i just want to be able to sit like a normal person or even sit like I did before all the surgeries. So I ask you how do you sit? Most people will probably give a strange look to that question because you have probably never thought about it. It's a normal thing to just sit so why would you think about a silly question like that. Now I'm gonna take it easy for the rest of the nite, had a busy afternoon. So let's see what tomorrow holds!!

The itching is gone....at least for now

It's Sunday nite March 26th. I had to relax again today because the drainage gets to be too much. We now call it red drainage. I had to change the dressing today and as I am pulling out the packing strip from the top tunnel it hurts some but gotta get it out. I finish taking out the rest jump in the shower to wash and make sure the wound is good. Again after my shower I head for the couch to pack the top tunnel and then relax back letting the wound get some air. Today the rash is almost gone but it looks way better than it did yesterday. Looking at it yesterday I wasn't for sure if it was gonna get better or not. Tomorrow my home health nurse will come and we will decide if we get to put the wound vac on. I am suppose to have it for a month. It's the last step before surgery. On a completely different note the itching finally stopped, of course realizing that as soon as the wound vac was off the itch took off as well. Hopefully tomorrow we get better news.... Heres the thing, this is the second time around that I have had to deal with a wound vac. The first time was not a happy ocassion at all. That thing hurt bad enough I would cry when they would take it off. You learn though to breath through and know that the pain doesn't last long and then you can relax afterwards. I have tried my best to be strong and hold on to my faith and be positive throughout this journey. It's not been easy and today was kinda a blah day but I am still pushing through. I have to take the small victories when they happen and run with them because eventually they turn in to big victories. Peace out Tater Tot

Meet my new best friend part 3

Friday Its another wound care change day. I am suppose to go over to a friends house this evening for pizza. I let them know I have to wait till my home health nurse is here and finished. Again time to get active, use the cross body strap and go for a walk. The itching is still there and again I'm trying my best to ignore it. The afternoon flies by, but I notice when I am in the bathroom there is a couple of red spots on the bottom of my wound under the tape I see them amd hope its blood and not a rash starting. My home health nurse finally gets here at 6. As she is taking the tape off I am having a little pain. Once she is done I notice a lot more spots on my skin and my wound. After we talk bout what we are gonna do and what we should we decide to leave the wound vac off and go back to the wet to dry dressings. She covers the entire wound in a thick layer of Destin. She uses the packing strips to pack the tunnels. I actually notice and show her that it looks like one of my shorter tunnels is actually closing up. That is great news and I decide to look and the last tunnel that popped up is gone as well. We use extra tape to put in places on my belly that hasn't seen much tape in the past month or 2. I had to let my friends know I couldn't make it and we should plan again but only on Tuesday or Thursday and weekends since I have the wound vac. Saturday It was weird sleeping without having the wound vac and listening to it. I was actice today as far as walking but decided I had better just relax this weekend since the drainage is just excessive and with the rash trying to start. Take my shower wash the wound and area. As soon as I am stretched out on the couch I pack the top tunnel. You see, the opening is trying to heal and get smaller. Now I know what you are thinking isn't that what we want? Yes but the tunnel has to heal from the bottom up. If it heals at the top then I still have a tunnel that will have drainage in it and that could cause extra problems, not that we already don't have enough to deal with. So I get that top one done and let my wound get some air and just let it breath for a few hours. Looking at the wound it doesn't look any better than it did yesterday. I clean it with some saline and pack the other tunnels, then I put a layer of Destin on it. I take a pic and send it to a friend. Her response, it looks like you are frosting a cake and a little bit of strawberry filling didn't get covered. That made my day I laughed so hard at that. Just to let y'all know I take pics of my wound on a daily basis and when I have the wound vac as soon as she takes everything off then I get my pic.

Meet my new best friend part 2

Wednesday Oh my gracious please make the itching stop!!! Yes i have done Destin, cortizone 10 creme and rubbing it. The tubing is long, it keeps hitting my leg as I walk, hmmmm gonna have to figure out how to put it in my lovely case so it doesn't trip me. Hang on it's stuck on a cabinet knob, ok we are good now. Man when it gets around a knob it pulls on my stomach. Today is the first day of changing the wound vac. The itching is getting worse and I'm trying to ignore it. I take my meds that will help with the changing of it. Yay, i get to get a shower. I know crazy but you can only take showers on the days you are getting your wound vac changed. There is a process, you first must stop the machine from suctioning then turn off the machine then you make sure your clamps are in place on the tubing. Now make sure to be careful of the tubing thats hanging from your wound (in my case its my belly). If you take a shower on the days they are not changing the tubing out you run the risk of getting water in the tape and the black foam and then it sits there and you have a lot of moisture which creates germs and could cause infection. My home health nurse is here and shes great, I have the very best. She starts taking off tape, and then takes rhe foam out of the tunnels and then cleans it, now time to repack and yes more tape. I should have invested in tape. I feel like I am keeping the medical companies up n running. The top tunnel is my problem child and will cause me pain so why should today be any different. Thursday It's an off day, time to walk and get active. Wait where is the cross body strap, now I see it. The bag even has a place for my phone. The wound vac is easy to keep around as long as you are aware of the tubing and where it's at. This afternoon I'm headed out to whole foods with a couple of friends. Yes my new friend went with me. If people were looking I didn't notice. I did see where I can put the tubing at so it isn't as long and I'm not tripping over it. The itching is just out of control no matter what I do. I hope we figure it out soon. We stop by trader joes and same thing if people are looking I don't notice. Now to a restaurant food is delicious and my friend sits in a chair beside me. Now I'm home trying to sleep but the itching......if I scream do you think that will be ok?

Meet my new best friend

Week 1 Monday at 8 in the morning I get a call, my wound vac has been ordered and will shortly be on the way. By 9:30 the box my new best friend is in is here. Yay me (sarcasm included). By the evening time my home health nurse is here to get me attached to my wound vac. The top tunnel opening is still small so turn the q-tip around and use the stick end to put the white flexible foam in the tunnel. I look down and see all white sticking out of 5 holes, yes thats right 5 holes. There is tape everywhere to protect the new skin, don't want that messed up while trying to heal the tunnels. The black foam goes on and then yep you guessed it even more tape. My belly has already been itching now its doing it worse. Tuesday I had a doc appointment and I get in the car and my new best friend is beside my leg while I drive. My mind is constantly on where the hose is, dont want it to trip me. Wait I have to go to the bathroom, where's my friend? Ok ok i got it. Do you know where to put the wound vac at in a public bathroom? The only place is around your neck or cross it over your shoulder. Im not sticking my friend on the floor in a public bathroom!! Its lunch time and I'm hungry wait lets go to Panara Bread for bagels for breakfast. Hmmmm lets go inside this time to see what they have or if there is anything new. My best friend goes across my shoulders and some of the tubing is down. People walk by and look and some do a second take to see exactly what they are looking at. On a positive note my friend will hold my phone for me!! We are home now and again my mind is constantly on my new friend make sure you take it everywhere. My doc said yes it really is your ball'n chain