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04.28.2011
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My parent would be so proud

Well, it turns out I am an over acheiver.  I am just so good at building skin, that I just can’t stop.  So I built so much, the wound can’t close.

The solution….lets BURN it off.  Sounds fun, huh?

Dr took silver nitrate on a stick, and rolled it over the excess skin.  Luckily, that excess skin doens’t have any nerve endings.  For the most part.  The left really did burn pretty good.

The idea is to cauterize the skin and have it slough off so the wound can close.  We will do it again in 2 weeks if it all doens’t come off by then.

So it went from this nasty looking flap of excess skin, to looking like a charred marshmellow stuck under my arm.  lol

Still not lots of pain.  and it is sloughing off pretty well.

The best part…..NO MORE WET TO DRY!!!!  Now it is just using antibiotic ointment.  And if I am not worried about my clothing, I don’t have to wear a bandage over it!!!!  I am so going to love that part, and so is my skin.

So we are still not done yet. But we are closer and without having to do all the bandaging, I will feel better.

Here are some pic of the before and after the silver nitrate.

See you in two weeks.

Marianna

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04.21.2011
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7 weeks later and still not done

Ok, really?????  6 to 8 weeks has turned into 15 weeks to date.

And the right arm is no where near finished.

The left arm had closed, and I guess I made the mistake of trying to use a scar diminisher too soon, and it has reopened.  So I am back to wet to dry bandaging on that one too.

I just don’t get it.  And it is much more tight under each arm.  Stretching is much harder and has to be done much more often.

I know this is just one big cry fest today, but I am really just over this.  I am so tired of tape of any kind.

I have tried it all.  Bandaids, Keflex tape, hydrocolloid bandages, paper tape, you name it.  Those two holes in my arms don’t hurt at all.  But the skin around them is screammmmmmming!

I thought my next appointment was today, but it is not until the 27th.  I will bring many questions and concerns to the Dr. next week.  There has to be something to help heal faster.

I promise to update after that appointment.

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03.06.2011
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Better Late Than Never

Sorry for the late post.  Unfortunately, my Mother-In-Law had to have emergency bypass surgery.  And being there for my Husband and his Dad was more important than getting this out to everyone.

Now that I have some time to breathe, I can give an update.

I wish I was getting to say that now that we are at week 8, I am healed and 100%.  But no.  Not yet.  And not sure how much more.

You can tell by the pictures, the progress is pretty amazing.  And we are getting close.  But when…..when will I get to stop these annoying twice daily bandage changes.  When will I be able to stop killing my skin with tape.  When will I be able to just put my arms down to my sides like a normal person.  When will I be able to let Avery tickle my pitts? She asks everyday.  I am so over this.

But I am a good patient.  I grumble and mumble and then dutifully go to the “hospital” (my nickname for my bathroom) to do the change.  I am too afraid of what will happen if I don’t.

I know the end is in site. But it is kind of like driving in the plains.  You can see the mountains in front of you, and they look so close, but it takes forever to get to them.

And it’s not like I can’t do anything anymore.  I have full range of motion and have no trouble picking Avery up, or anything for that matter.  I do think my energy level is still being affected, but no where near like it used to be.

Enough moping.  I did feel confident enough in the smaller bandage that I tried on my wedding dress without fear of messing it up.  And it won’t need any alterations.  Since it laced up in the back and was open, we just have to lace it tighter and the back will be less open then when I wore it before.  That is a releif.  Now I just need to find shoes.  The shoes I wore at our wedding damaged in a move, so I need new ones.

I will try not to be late next week.  See you then.

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02.24.2011
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49 days and counting

Start of week 7 and nothing to report.  But that is a good thing.

Only real thing is how amazing the healing is going.  I mean look at those pictures!  Amazing.  I went to New Bern last weekend and Robin just freaked out!!!  She has’t seen them since 3 weeks out.  Not in person, just the pictures.  She couldn’t beleive how small they were.  Or the amount of pretty new skin.  It is very strange to have your big sister proud of you for your skin growing abilities.  :P

Only misbehaviour on my part is not tending to the new skin as I should.  I cut back on my showers.  My skin felt like it was coming off by the handfulls I was so dry.  My skin is so sensitive that I can only shower every other day in the SUMMER.  (can you just imagine how THAT was dealing with the disease.  Lots of acne wipes and facial cleansing cloths were used in my day).  In the winter, for get it.  My skin looks like a chalk board.  Slap my leg and you see a dust cloud.  LOL

But seriously, I was not taking my 1/2 hour long showers every morning and letting the hot water help me strech the skin and keep my mobility.  Had a real rough evening on Monday trying to get my arms straight over my head.  I have been perfect ever since.  Daily morning hot showers to moisten and soften the skin.  And a good 10 to 15 mins in the shower stretching my arms every which way.  Even ways I just can’t imagine I will ever need to move them in the future. But hey, you never know.

And I am trying to remember to stop typing a couple times a day and stretching at my desk.  Then again at the bandage change before bed.

Seems to be the only real worry now, as long as I keep up the good 2 a day changes.  Keep ‘em moving and keep ‘em stretched.

I am scheduling my dress fitting for next week.  For those of you who don’t know…April 7 is my 10 year wedding anniversary.  I was brave back then and wore a dress with cap sleeves.  You get good at knowing how to do things without raising your arms when you deal with hidradenitis for this long.  Armand and I will be holding a Vow Renewal Ceremony this year to celebrate.  I am happy to say that I can fit into that dress, and will actually have to have it taken in.  I have been putting off the fitting until I could get a smaller, less menacing bandage over the wounds so as to not scare the tailor.

I am so excited to see myself in that dress again.  And I will be waving my arms for everyone to see on that day!

See you in a week.

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02.18.2011
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SLOWLY disappearing

I got another great report this week from the Dr.  Everything looks great and neither of us can complain.

Well, I will complain, but just a little bit.  After a wonderful glowing appointment the Dr’s assistant said that I needed to make my next appointment in 4 weeks, instead of 2.  Now most people would think that was great.  But my only thought was…..you mean that this won’t be healed before then?  What happened to my estimate of 6 to 8 weeks.  We just passed 6.  2 more weeks is 8.  But you don’t want to see me until 4 weeks?!?!?!

Not what I wanted to hear.

But, really, can I complain?  I mean, I found out the dimensions of the wound immediately after surgery.  Right-14cm long by 9cm wide.  Left-14cm long by 8.5cm wide.  We are now at 10cm long by 2.5cm wide bilaterally!  That is pretty amazing.

So I guess I am still a skin growing machine.  They should have had that as a subject in high school or college.  I could have been validictorian! :)

Taking my first overnight trip away from my house since the surgery.  Heading down to New Bern to celebrate my Great Neice’s 1st birthday.  Luckily, that is where Robin lives, so I know I am taken care of if there is any emergency.  Not that I expect any issues at this point.

The only thing that could be considered not optimal is the fact that there is some Hypergranulization in the upper part of the right wound.  What that means is that the bright red granulated skin that we are keeping moist while the new skin grows in and the wound contracts inward on itself, is raised above the skin that was not effected by the surgery.  No real concern at this point, but want to keep an eye on it.  If it gets raised too much it could cause an issue with closure or scaring.  And could cause some pain.  That will let me know if it gets too bad.  Treatment is with silver nitrate.  That is something I DON”T want to have to do. The day after my surgery there was one or two spots in the right wound that would not stop bleeding, so they used the silver nitrate stick to stop the bleeding.  HOLY CRAP did that hurt.  Worse than anything I felt during any of the bandage changes.  My butt came so far off the bedI had to have created a new yoga pose.

So we keep an eye on that, but otherwise, keep doing what we are doing.  I have not changed the type of gauze I use for the wet portion of the bandage, nor have I stopped using teh 4×4 pads then abdominal pads over that.  But I am experimenting with new ways to hold the stupid stuff in place.

Before this is over, I will have invented the perfect underarm bandage.  Very niche market, I know. But I also know that those of us who have been in need of one would pay dearly for the right thing.  Working on names like the Pitt Pad.  Or the UnderArm-or. LOL  Whatever the name, I will probably figure it out and create it just in time for my pitts to have healed. :P

Even though I don’t go back for another 4 weeks, I will still keep updating weekly to keep track of the shrinkage.  And prove to the Dr. that I don’t need another 4 weeks!

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02.11.2011
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No News Is Good News

Nothing new to report.  Still going along with the bandage changes as I am supposed to.

I do have to say that I am a bit over that.  Even though I am doing them myself now, it is a bit tedious to have to do it twice a day.  Just a lot of stuff to get prepared to do it really.  Not the actual change.  But yeah, I am ready to be done.

Just a bit worried about scaring and my lovely loose skin.  As you will see in the pics, it is deciding to pull that loose under arm flab together in a not so attractive way.  But I still have to say it is better than the alternative.

So please take a look at the week 5 pictures.  There has to be a good full centimeter of brand new skin around both wounds.  Lookin’ pretty good.   Anyone ever need any advice on how to grow skin, just come to me, because I am pretty darn good at it, if I do say so myself. :)

Next Wednesday is the 6 week check up with the Dr.  I think she will be pleased.

Til then….

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02.04.2011
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Perfect Check up, New Friend, Date Night & Complete Stupidity…

So the end of week 4 found me back at the Doctor’s office for my check up.  I was told I should be the poster child for this surgery.  I am healing wonderfully, moving my arms like I should and not having any pain.  She was even surprised that I drove myself to the appointment.  A good 45 min drive from Wake Forest.

She is real happy with shrinking size (12cm x 4 cm on the right and 11 cm  x 31/2cm on the left.  Don’t know the size when it was first done, but it sounds good) the new epithelial skin that is coming in nicely all around the edges.  You can see it really well on the 4 week pics.  I will get to why the wounds are so red later in this post.

So all in all, I am progressing like I should and am real happy.

And this blog is doing what it is supposed to.  On Tuesday night I got to speak with a friend of a friend (who I now count as a new friend) who told me she was brought to tears when our mutal friend showed her this blog.  She said she finally had someone who could relate to what she has been going through for years and years.  We talked for a good hour, going over war stories regarding the disease.  Our physical and emotional battles.  The fact that other people who don’t have it, may be able to sympathize, but really can’t understand what it is like.

It was good to talk to someone else who has been going through it as well.  My brother can relate, because he will get a cyst occassionally.  But unless you suffer from the disease to the extent that my new friend and I have/do, it is really just unfathomable.  And my husband is so supportive and wonderfully blind to the scars and yuck that comes with having a wife with this disease, but neither can he really understand not only the physical pain, but the emotional pain of having somone, even someone you love, and you know loves you, see this disgusting disease.

And it made me feel wonderful that I could have touched someone with my story.  Helped in some kind of way.  I even learned more talking with her as well.

So, C, I can’t wait to meet you in person, and I hope it will be soon.

Since I had such a wonderful check up, and since Armand was heading out of town the next day for his newest Success Training Event (that this surgery has kept me from attending and running the registraiton, which is killing me.  Those who know me well, know my innner control freak is going nuts right now, knowing our whole staff is out in LA without me, doing my job for me) I decided it was time for a date night.  He definately deserved it after dealing with this with me for the past 4 weeks.

We had a wonderful dinner at a new-to-us restaurant and then went to see The Kings Speech.  I highly recommend it.  It deserves all the awards it is up for.  Thank you Judy for baby sitting Avery at the house.  Seeing as how she woke up throwing up, and didn’t end up going to school, I guess she could have stayed at your house. LOL  Wouldn’t have been that fun for you in the AM. :)   It was good to get out and feel like a normal person again.  Without feeling like I have huge diapers under each arm.

With such a good check up, I thought I could look at different types of dressing.  With the smaller size I figured I could use smaller gauze for the saline packing and use these really cool large Nexcare Bandages that actually cover the entire area!  With the smaller gauze and smaller bandages, I would have less bulk and not feel so conspicuous out in public.

Here comes the old addage….that’s what I get for thinking.  NOT a good idea to chenge from what was working.  I know that it is not always the case, but for this instance, IF IT AIN’T BROKE, DON’T FIX IT!

So after our date, I didn’t feel like doing a bandage change.  I had already had 3 changes that day, one in the am, one at the Dr and one before we went out.  No need for another one, right?  So I went about 5 hours longer than usual between my night time change and the next am change.  PLUS the new gauze, less saline and different bandages. 

I stood in the shower for 30 minutes straight with the water directed right on the gauze and it would not budge.  I finally got the left arm gauze off, and almost passed out in the shower stall.  Not necessarily from pain, but from anxity, fear, the actual feeling of pulling the beautiful new skin that I spent all week growing, off, and the blood that subsequently occured.  No hemorage, but still blood running down my arm.

Got out of the shower and called for Armand.  I wasnt’ going to put Danielle through this type of change.  Luckily he was up due to Avery being sick all morning.  He came down and we tried going back to the original way we did the changes, by soaking them in saline and slowing pulling them.  It took him another 30 to 45 minutes to finally get it off.  After much cursing, fear we would have to go to the emergency room to get it off, because it didn’t look like it would budge. 

After many tears of frustration on my part, he finally was able to get it all the way off.  Again, no real pain to speak of (it wasn’t comfortable, but it wasn’t real pain).  Then another 15 minutes of pressure to stop the bleeding, we were finally able to dress both arms again and get things back to normal.

I can promise that I will not get cocky or ahead of myself again.  While I am doing amazingly well, I AM NOT HEALED YET.  That is my new mantra…I AM NOT HEALED YET.  I AM NOT HEALED YET.  I will stick to what we know has been working and working well for us for the past 4 weeks.  And I will tell myself daily that I AM NOT HEALED YET until the Dr. tells me otherwise.

Kind of looks like a pattern for me doesn’t it?  Pushing to be better faster.  I’m working on that.

So even with the drama of this mornings bandage change, I still feel like I am doing amazingly well and the pictures, while a bit redder and angrier than they have been, show much progress from last week.  Along the edgers you can really see the new epithelial sking coming in nicely.  That is the skin that will continue to grow and pull in towards the center to bring the whole thing together. Pretty awsome how the body works to heal itself.

Til next weeks adventure. :)

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01.27.2011
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End of Week 3

Progressing nicely.  Probably too nicely.  I still can’t get it through my thick skull, that just because there is no pain, I am not better yet.  I get worn out so fast.  And it sneaks up on me.

Honestly, how much energy does it really take to sit at a computer all day and do book keeping and accounting and online research (oh, an a little facebook time).  But by 5pm when I get up to go down stairs, I can hardly keep my eyes open.

Then there are the days I wake up feeling so good, I think I can walk around Target to find the “perfect” shirts to wear with the netting.  I do make sure I have a cart to lean on at least.

But all in all, noting really major to report.  Changes are real easy.  So easy in fact, we didn’t even have to pour saline on the gauze to remove it last night.  It just came right off when I was taking off the outer absorbant pad.  Made Armand’s job easier and kept me from getting splashed with cold water.  I think Armand secretly enjoys that part. :)   He takes some sinister pleasure in “accidentally” pouring the water too far down my side so I jump like I was touched with an ice cube. :)  

Still had to soak them off in the shower this morning.  Not sure if Danielle had the gauze very wet on Wednesday morning, so it came off easy. Or if Armand had the gauze not wet enough so I still needed to soak them.  We will see tonight.

I did do my own bandage change today.  Armand was up so late working last night that I didn’t want to wake him. (that, and I wanted someone coherant putting on the gauze)  So I did it myself.  Not the easiest thing, but don’t think it will be too bad in the future when the wound gets even smaller.  Maybe another week. 

3rd week pics are posted for those keeping track of the healing process.

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01.23.2011
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Stretch

Sad day….my sister has gone home.  Not that I don’t trust Armand to do a good job, but Robin has taken care of me so well and knows the wounds so well…not to mention that she is hilarious. :)   I’m gonna miss you Robin.  Thank you sooooo much.

Dressing changes get better and better every time.  I am back to removing the gauze in the shower by myself to make it easier on the person changing.  The wound surface is so much better now that I can simply soak the gauze and peel it right back. Then it is just a matter of lying back and letting them put the saline soaked gauze, a couple of 4×4 pads and then the ab pad to absorb most of the water.

My new challenge is stretching.  For the past week or so I have been working on getting my arms over my head and stretching my arms to make sure I don’t get any decrease in range of motion with the healing skin.  Honestly, that is the only pain I am having anymore.  I was pretty concerned that I was having some issue with decreased range.  It was hurting pretty bad to get that right arm over my head.

So at the last Dr appointment I asked the Dr to make sure I was doing ok there.  She said it all looked good.  When I asked her why it hurt her answer was very interesting.  Basically, she told me that I had lost range of motion PRIOR to the surgery with all the scar tissue (and when I look at the before pics again, I can see the long sinus scars pulling).  The pain I am feeling in my arms is from the muscle that has not stretched like that in years is now being asked to stretch that far.  And it is letting me know it.

All makes sense now that I think about it.  It really is weird how you can live with the pain for so long.  And live with the other issues that come with it.  Until you just can’t live with it anymore.  And funny how pain that I am feeling now, different pain, is so much easier to deal with.  I say easier.  But I guess I really mean different.

The pain with the hidradenitis is one that can’t be eased with pain killers.  Even narcotics don’t touch the pain of a cyst pressing and pressing against the skin trying to release.  Pain killers don’t work on that type of pain.  The only relief is release.  The fact that I can now just take an Alieve or a Tylonol and in about 30 minutes forget that I hurt…it’s amazing.

I am not saying that I think I am anywhere near better.  I know I have so much more healing to do.  And it will take a lot of energy to grow the new skin.  My biggest challenge will be keeping myself in check and not over doing it.  I still have Armand, Bill, Judy and Danielle to remind me to stop and not do so much.

But I miss picking up that little girl so much.  She is dealing pretty well with Mommy not being able to do as much as usual.  And she understands very well that my “pit boo boos” hurt and she can’t jump on me.  But I think sometimes she just wants me to pick her up and hold her.  I get my hugs in as often as possible and let her crawl up on my lap, gently, whenever she wants.

All in all, I am doing so much better than I could ever have imagined.  I have only had my one or two days of “why did I do this”.  The rest have been “why didn’t I do this earlier?”

Thanks for listening.

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01.20.2011
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What a difference a day makes

All the crazy colds and sickies and insomnia floating around this house not withstanding….I can’t believe how great I feel.

Since the weekend, the changes have been so easy and the only thing really hurting has been dealing with the tape.  Tape is an evil thing and should never be placed on the skin unless your skin has been very bad and commited something like murder.  The places where the tape has been having to be used hurt worse than the wound.  CRAZY!

Perfect appointment with the Dr today. She is very pleased with the looks of the wound.  The wetter saline guaze was not a problem and she said to keep on doing what we are doing.

The only questions we had this time was about healing.  I was concerned that we would have to keep taping the same areas.  I asked about how the wound would heal.  Was it an issue of slowly growing in on itself and ending up with a smaller and smaller kind of round wound or scar.  And as the wound got smaller, I should be worried about getting the tape on the new skin.  And she did say we should worry about it.

However, the way it will heal is a bit different.  This red red granulated skin that is filling in now will continue to do so.  At the same time, the sides will start to contract inward as well as new skin growing so it will end up more like a long linier scar about an inch wide and close to the length of the current wound.  Interesting…

So again, it raised my concern that my poor skin would be totured for the next 4 to 6 weeks.  She said we could probably use a netting that they use for burn patients to hold the gauze and padding in.  So they came out with this WONDERFUL stuff and we can now do bandage changes without tape!!!

I have posted a picture of the new bandages with the latest wound update pics.  I posted the bandage pic first so you don’t have to see the wound if you don’t want to, but want to see the cool new bandage technique.

It was a bit awkward getting it all on at the Dr. office.  Robin and I were a bit concerned that it wouldn’t be tight enough to hold everything in place.  It was a lot less wet as well, so we were a bit worried that it would hurt coming off.  Tonight’s change was amazing.  Yes, it was dry, but all Robin had to do was soak it and it came right off.  And we figured out putting on the netting so quickly….Unless it doesn’t do well while I am sleeping, I think we have found the newest technique for us.

We will see what, if any thing, the netting does to my skin.  I may get irritated with it as well, but at least we have an alternative and we can switch between the two if we need to.

All in all, I am feeling much better.  Trying to keep the cold that Avery and Danielle have away.  Not sure it will stay away, my sneezing and stuffy nose tell me otherwise.  No aches and pains at this point though.

If we can keep this as the status quo, or better, for the rest of the healing process, I will be a happy pit-less person.

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