Can you hear me SCREAMING?

All I do is complain, I know everyone is so sick of it, dammit I'm sick of it too, but I sick of feeling it even more. This surgery has become a nightmare. I formed two ulcers one under each breast so I've been having to do dressing changes. Well during a dressing change on Thursday night, as soon as we took the bandage of it looked like a horror film it started spewing this yellow liquid and blood mixture everywhere, the moment we put a new THICK bandage one, literally within sec. it was saturated. So we scrambled to get some clothes on me, and bandage it up thick then mom ran to get ready and off to the hospital, by the time we got to the hospital, which at night only took maybe 10 mins, it had soaked threw all the bandages, my shirt, my coat the arm of my coat, it was everywhere. Luckily, since I looked like I just came off the set of a horror flick, or was just shot, they took me back immediately. I'm not going to go through all the crap they did and didn't do at the hospital, but in the end, they took the drainage tubes out to early at last weeks appointment. The fluid didn't have anywhere to go, to it formed some type of pocket, and then it found a opening at the ulcer to have the fluid burst out of. Nice, right. They told me I'd just have to keep bandages on it. Luckily the burst only lasted about 6 more times, now we are down to just a steady leaking, out of BOTH breast ulcers. So I"m having to change bandages on each breast about every hour. Its horrible. On top of that the moisture from this liquid has made the ulcer openings larger. The one on the right is probably almost a 3 inch opening now. All my pain meds where wonderful at first, but now they aren't touching a thing, I had already lowered some, and not going to up them again, which means they are going to have to find something else to help. I don't know what else, but something. I'm in constant horrible pain. I just want to cry all the time, but I honestly have no tears left. Friends all made visits last weekend, so of course I'm alone this weekend and might be for the next 3 months. I hope someone comes back. But I understand I'm not fun. This sucks right now. Maybe I'm just looking for sympathy, but who cares, wouldn't you in my position?. I think I'm just looking for empathy cause right now I just feel so lost, so alone, so sad. I knew this wouldn't be easy, but I never imagined it would be this hard.

4 days post op updateit

Just wanted to update for myself really. Put it in writing. I can't believe its only been 4 days, seems like I've been drowning in pain for much longer. Doctors said it would get worse before it gets better, they were right. The swelling hasn't stopped, and the bruising gets worse by the hour. I'm just ready to be off that ride, and get on the healing train. I'm still in agony but my body has adjusted to the pain, I don't scream in anguish everytime I stand up, although it feels the same I'm adjusting, inside I still scream. I've gotten the nicotine patch so that I don't have to go up and down the stairs everytime I need a smoke, I still do a couple times a day, but thats because I go down to get food or a drink and I smoke, but I'm down to only a few a day, and no I don't plan on quitting, its simply because it hurts to go down the steps. So ya'll who know me, know I'm in pain if I'm giving up smoke breaks lol. Every surgery I end up doing to much to soon, I had a bit of that the day after I got home, and paid for it. I have to remember that I'm on pain meds that are doing their job. Just because I feel a bit better doesn't mean I am, just means I'm staying on top of my meds correctly. Dr. said stop taking a dose and see how ya feel. Ummm. no thanks. I'm on so many meds, it keeps me very out of it and loopy. I don't mind, I sleep all the time, but that is good for my body. I have my first post op on monday, will see how that goes, I'm a little worried, thats when they do their poking and prodding and pulling me every which way, sucks. They will adjust my meds then, or just write the same things. The Ativan has been a life saver it really helps me sleep and keeps me from crying every 5 minutes which I needed, the crying only made me hurt worse, but I couldn't stop. Its a very emotionally and physically thing to face so my tears aren't unjustified. Anywyas just rambling to my self, I'm slipping off into sleepy land right now, so I'll write more later. Bur before I go, I have to say that the HS community, my HS family, my family, and my friends have been nothing but amazing. I appreciate all the kindness and love. It keeps me going. Love you.

Surgery 3 fast update

Surgery went well. I'm so happy to say that my breast look good, not deformed at all like I thought I would be. The surgeons ended up going with a different plan once they got in there. However with how good they look, comes the HORRIBLE pain. I never knew someone could survive in this much pain. Its truly agonizing. Its from the stretching of my skin, and bruising...etc. They swept me out the door still since I have no reg. insurance but they gave me enough pain meds to keep me knocked out and I'm literally drifting in and out of consciousness even now, this is constant. I'm on Fentanyl patch 75 mcg every two days, 60 mg, MScontin, which is time release morphine every 12 hours, 16mg of delaudid every 3 hours, ativan whenever I want it, and countless other meds such as antibiotics, stomaach meds...etc. I'll post a couple pics then I'm done online for a few days.




This is my left ear, they removed the back of my ear then did skin flaps from my neck.



This is my right breast area, left looks the same pretty much. You can't tell in this pic, but there are incisions going all the way across the bottom of my breast as well. All the dark lines are incisions, and you can see the bruising, which is spreading. The skin is so tight its unbearable. I also have two drainage tubes one on each side of my breast.

Frustrated.

I'm almost 5 months post op and I just got out of bandages a couple weeks ago, today I wake up and I'm back in bandages again. My last surgery was such a mess, I can't wait to have it fixed, but it will be at least July before that can happen since I have surgery again March 1st. The incision keeps getting ulcers and getting red and splitting. I'm tired. Urgg.




I just took this, doesn't it look horrible for 5 MONTHS later?!

Next surgery...

Had my pre-op appt. today. My next surgery won't be until March 1st. Its a good thing! I was rushing to do my next surgery because the resident surgeon that I adore is leaving at the end of Jan. However, she has agreed to come back on March 1st for my case, and may even be getting a permanent position at MCV. I'm so happy! The reason for the delay is I was supposed to have a double mastectomy. I was literally losing sleep and it truly scared me. She told me at the beginning of my appt, that she was going to do everything she could to prevent that from being reality. She took pictures of my chest, and went to talk to some other surgeons. Luck have it, the HEAD of plastic surgery at MCV was there. He looked at the photos and said he would take my case with her. They came up with a plan, and they will be doing a different procedure. Basically they will remove the lower part of my breast, and the center area, then they will remove the fat from my upper stomach area (liposuction) and pull the skin up and form that skin into new breast. I will be deformed looking and have horrible scars going across my breast, but I will still have a shape to look closer to normal in clothes. Its going to be a pretty radical surgery, but its a heck of a lot better than removing them. I'm still terrified, I have no idea what to expect, but its comforting knowing that the head of surgery and my favorite resident will be working on me. I'm nervous now, I can't imagine how I'll feel in Feb!

She also looked at my botched last surgery (which she didn't do) and said she is going to make sure it is taken care of. Which means 2 reconstructive surgery sites to fix what the last surgeon did. The way it has healed is why I keep getting ulcers on the incision. I really hope she gets the permanent job there, she really has my best interest at heart, which is rare with me and doctors, and this damn HS.

Here are a couple pics of the BOTCHED job.



Not a great angle but you can see the "fold" in the arm pit, which is where the ulcers keep popping up.



This is my arm at the front where he sewed me together and it left a large lump, there is also one on the back on my arm, which I obviously can't take a pic myself..lol.

3.5 week post op

I'm a little over 3 weeks post op and after a trip to the hospital a couple days ago, I'm feeling much better. I was having a rough time so they removed my last drainage tube. OMG did it hurt. I've had several drainage tubes removed now but when they pulled this one out, it seemed like a eternity, I know everyone in the hospital heard me scream, when I looked at it, it wasn't like any of my other drainage tubes, it was square, huge, and it was about 9 inches inside of me, I seriously hope I never have to get a drainage tube like that again. But now that it is out, its amazing how much better I feel. I'm still extremely sore, and hurt, but overall, I feel like a different person. Where the tube was inside of me I was having pain, they had it positioned going up my back, and boy my back hurt, I'm still sore on my back, but it is def. getting better. I have quite a few weeks left of healing, but I believe I'm over the hump. I drove today, not well, lol. I had to go get my prescription from the drug store not even 5 mins from the house, but it hurt, and I won't be doing anymore driving for a while. I wouldn't be able to react quickly if something were to happen, it was painful, and just not worth the risk. I took my 2nd shower the other night, and did a lot better, so I'm going to start showering instead of bathing in the sink, which is nice! I go back to the surgeon in a few days, and hopefully they will think things are doing better. I have a small infection under my arm, they think its a yeast infection...haha...so I'm using creams and powders, but it itches like crazy. I've been taking 2 benadryl 3 times a day, so I'm very sleepy most of the time. Think I might drop down to 15 mg of morphine this coming week, but I'm not sure I'm ready for that, I want off of it, but I don't want to be in tremendous pain either. Hope my 5 week update will be even better.

2 weeks post op pic

2 drainage tubes gone, 1 to go.