November 12th, 2009

 

A friend emailed me today to ask how the leg is doing, and that made me realize it had been a while since I posted an update.  Later, when I do bandages, I'll try to remember to get photos for this post.

 

The scar's back to where it was when it was pretty much at its best. It doesn't seem to get any better than this, though ... or at least, from this point, progress is so slow, and has been riddled with so many setbacks over the last year, that this state "appears" to be a stalemate of sorts.  The skin is very fragile, I keep it padded with my layered approach of manuka honey, panty liners, abdominal pads and stretch gauze.  It does peel and bleed in tiny spots occasionally, but not a lot.  It hurts some, on and off, but not much.  If I leave it uncovered/without honey for more than a couple hours it starts to tighten up and dry out and hurt, so I've just been leaving the honey on it most of the day and night.  I'm not sure if I should let it dry or not ... last time I tried that (left it uncovered at night), it started making yellow gunk again and then the fall and subsequent abuse from the C-walker boot led to a return of the pyoderma gangrenosum.

 

I may spend the rest of my life slathered in manuka honey....

 

I'm considering wrapping with the ace bandages again, as I'm starting to see, at the top of the shin, an occasional appearance of larger veins.  Not those big pipe veins like it used to have, don't worry ... just more visible blood vessels than looks normal.  Maybe they'll show up in the pictures ... if I remember to take them.

 

In the whole, though, I think it's doing okay.  I try not to think about the fact that it's been over a year, and now I'm a year's onward from actually coming home from the hospital.  That was the 9th of November, 2008.  It's really hard to believe ... it's like I've lost over a year of my life or something.  Well, that was negative ... blah.

 

Anyway, yeah, doing better.  My back is much better, as well as the hip, and other things that were messed up f...

Well, I guess the photos below sort of speak for themselves, at least as far as the scar is concerned.  One tiny bloody spot, but otherwise the honey has once again worked its magic.  I would love to see those little black areas that keep popping up cease once and for all, but on the whole, we've made a lot of progress since the fall on August 3rd in Bassett's marble floored lobby, and the resulting return of the pyoderma gangrenosum.

 

I've had some back and hip problems, as the last post stated.  The sciatica, though it took some time, is finally gone.  I'm still having lower back pain, but even that is tons better as of today, for the most part.  It's still there, but nothing like it was yesterday.

 

I'm walking again ... at least inside ... and doing so quite comfortably.  I do find that I lose my balance very easily -- so I'm moving slowly and carefully, but at least I'm moving.

 

Now that we have no health insurance, and no options for medical care, I have to be extra careful, but I do believe I'm getting there.  My goal is now to gradually, and very safely, strengthen my muscles and improve my balance so I can finally leave this more-than-a-year-long mess behind me.

 

We're coming up on one year since the day Dr Resnick wandered into the room and told the surgeons to stop cutting into my leg, and finally correctly diagnosed the disease that was eating it.

 

I hope he can continue to read my updates.  I know I'm now on Bassett's "black list".

 

Sept 27th, and another Kriya

 

What's a Kriya?  Visit my blog post on gazehound.com about Kriyas and Crias to find out.

 

First, the good news.  See photos.  Big difference from the last pictures, isn't it?  Why?  I'm back to using all manuka honey on the panty liners under the abdominal pads and kling gauze wrap.  It's really astounding the difference that honey makes, isn't it?  As the side view shows, there are only a couple tiny spots of that brown gunky stuff left, and all the white goopy gunk is gone.  (Yes, those are official medical terms.)  If you'll scroll down past the photos, though, the Saga Continues.  There are days that I wonder if I'm really a cartoon character ... you remember Wile E. Coyote?  

 

 

My last, very brief, post sounded rather gloomish and doomish, didn't it?  There's good reason for that, though I want to start this section by saying that I really am a very positive person.  In fact I'm so positive-minded that I've, in the past, angered others who think I'm too much of a PollyAnna, finding the silver lining around every storm cloud.  That hasn't changed ... it's just that some days the clouds seem to move in so fast that I find myself running for cover and peeking out to look for silver linings from within the storm shelter.  Ya know?

 

And I've just typed out, and then deleted, the details of the story, because they sound so incredibly negative that even I have a hard time believing them.  Let's suffice to say that a certain medical monopoly has reneged on all agreements and promises and has left us seriously in the lurch, because:

 

 

I'm certain it's probably emotional/psychological in cause.  I'm sure it's going to be okay.  (I say that a lot, believe me....)  For the past three days, I've been unable to bear weight on my legs -- not be...

30th August, How's it look to you?

 

 

It's doing better, I think.  What do you think?  Though the surface area around the "new" lesions still seems to be widening, it's not going deeper than just the outer layers of skin ... which were the layers that have had trouble forming all along.  The centers of the lesions are still purplish, and the largest one, where the pus was oozing, a bit "bubbly" looking, but I do think it's improving.  The crusty stuff is peeling off -- that big black blob on the right side of the leg came off today when I peeled the bandages away.  Looks healthy underneath.  The lesion areas are not quite as purple or angry looking, as far as I can see.  I think it's getting better.

 

I'm also using the leg more.  I did all my morning pet chores on my feet this morning instead of rolling around the kitchen in the chair.  I had no problem -- used the counters, chairs, etc, to cruise where I could reach them and managed to traverse the open spaces in between without any trouble.  I'm taking it easy, as the ankle and knee are still grouchy, but even they are improving well.  "Weight bearing as tolerated", I was told, and that's working out okay.

 

There's another complication, however.  Well, maybe not so much for this episode, which was caused by a fall at the hospital, and as far as we know the hospital is going to continue to pay for follow-ups for this particular issue.  However, it is going to affect prescriptions and anything else not directly related to this.  Hubby lost his job.  He was let go on Tuesday after 21 years with the company, and as of this past Friday, I have no health insurance.

 

I found a really good online source of bandaging supplies, and my honey will continue, as long as I have enough income of my own to pay for it.  And I'm praying HARD for more animal communication clients, more sessions booked, more residual income from my website, trying to find writing work, etcetera and onward. Have to keep those bandages supplied and honey coming in for the leg ... not to mention...

Five Days After Dr Resnick Visit

 

Well, it's August 23rd.  I saw Dr Resnick five days ago, when it was pretty well determined that what I have is not an infection, but a return of the pyoderma gangrenosum.  Hope was expressed that we caught it early and could halt the spread with hydrocortisone ointment (which, by the way, is not 5% as I said, but .05%, duh, sorry).  Fortunately, it appears that said hopes are being fulfilled.  The leg is looking much better, the pain levels, though still there, are bearable, and I'm even able to put some weight on it comfortably.  That's a big "yay".

 

One really interesting thing, though....  I'm using xeroform with the cortisone cream over part of the leg, and there is one section of the leg where I'm using nothing but the manuka honey on panty liners (that still feels so weird to type, I keep thinking of Yoko Ono wearing the sanitary napkin on her head.  Yeah, I know, I'm old.  Sorry.)  

 

Can you tell where the manuka honey area is in these pictures from today?

 

 

Yup, you guessed it.  That nice, clean, healthy looking area on the calf there, in the photo above, is the spot where nothing but manuka honey is being used.  The "mushy" area over the shin is xeroform and cortisone ointment.

 

Granted, there is no doubt that the cortisone is helping tremendously.  The lesions, as you can see, are already filling in and pretty much closed up.  Much of that whitish gunky stuff is sloughing off when I wash the leg, and it's all over where the flare-up was trying to occur.  It's all, apparently, tissue the p.g. killed ... or which was already dead, and the p.g. underneath caused it to, uh, get deader.  (? And she calls herself a writer ??)

 

Yes, the area were the honey alone is being used is not part of the area where the flare-up occurred.  And, no, I'm not going to mess with what's working.  I just find it interesting that the healthiest looking spot on the leg is the spot the honey's been taking care of.

 

Anyway.

 

I'm doing better, already.  Big difference from almost a yea...

Saturday the 15th of August, 11:11am

 

Eleven-eleven.  Hm.  A topic for another blog.

 

I'm royally pissed right now.  Yes, angry, actually angry, not a state that's normal for me, really.  I get upset, down, guilty, ticked, sometimes I even blow a gasket for a few minutes, but a prolonged state of "angry" doesn't usually stay with me.

 

I'm taking this blasted boot off at night.

 

Since I'd been letting the leg air, and stopped wetting it down with honey (don't get me wrong, I still believe it was the manuka honey that was responsible for much of the earlier healing), the scar was drying out, and I haven't had any "bleeders" in a long time.  Until now.

 

This boot doesn't let any air get to the scar.  I'd been saying, because the blasted scar is turning to mush again and bits keep peeling off, that I need to call Barb Perry on Monday and ask her if, after a week, I can stop sleeping in the thing.  I can NOT risk this scar, I just can't.  It's definitely going backwards since the addition of this boot.  

 

When I saw that it was starting to get mushy again, and bits were peeling, and I saw the serum oozing from the one spot, I thought it best to start the honey again, at least in the fragile areas, to prevent infection.  That seems to only have made matters worse, though.

 

The boot does help during the day, when I am up and moving around.  I like it then, even though it presses on the scar and hurts in a few places.  It lets me walk on the ankle without the ankle hurting, and that's a good thing.

 

But this is what I found today when I unwrapped for dressing change/shower time (scroll down to continue text):

 

 

 

 

 

These were taken after my shower, so the blood had been pretty much washed away, but it's still oozing.  

 

This spot is right where the bottom edge of the top strap of the boot, even though the thick foam padding, has been bothering me.  The scar is mushy again, as you can see, even though they're out of focus in the close-up shot, there are big bubbles of yellow and black dead tissue again, wh...

Back on the Honey, 8/13/09

 

I had a follow up with Barb Perry on Monday the 10th, an orthopedic specialist at Cobleskill Ambulatory (part of Bassett).  After another series of x-rays, it turns out that there are no fractures in the ankle, but what had shown up on the first set as fractures are in fact shadows due to osteopenia.  This is a good thing.  Another good thing is that I'm in a "c-walker", as they called it, for two weeks (I hope that's all) rather than a cast for four to six.  The thing is heavy, bulky and uncomfortable.  I'm even supposed to wear it to bed, and so far have been sticking to that, even though it's pretty wretched.  It must weigh five pounds.  It does, "as advertised", help with putting weight on the foot, which I'm only allowed to do (to tolerance) while wearing the boot.  The boot is so uncomfortable otherwise, that it's actually surprising that it keeps the ankle from hurting when I step on it.  The knee is another story, but even that is getting better.  Barb manipulated the knee all over the place without any pain, so even that is apparently a sprain and nothing serious.

 

However, I've started, today, to use honey on part of the p.g. scar again.  Those bubbly yellow areas above have turned mushy again, and one of them is oozing clear fluid.  The leg gets no air in this boot except for when I take it off, as instructed, each day to shower and change the scar dressing.  I was only minimally concerned until, today, Kai zeroed in on that one spot and gave it a very concerned sniff.  Dogs can smell things that we can't, and it's the first that he's made a beeline for the leg for a very long time.  He's been pretty unconcerned about it since the honey finally closed up those gooey rivers that were persisting for so long.  Today, I hadn't even gotten the abdominal pad off yet, and he was trying to get his nose to that spot.

 

When I dabbed at the spot, after seeing the serum on the surface, what came off on the tissue was more of a greenish-yellow goopy substance.  I'm not sure if it was...

broken ankle, torn knee. cripes.

 

Was heading into the hospital to pick up my dad, who'se been in since last Monday with heart problems.  My crutch slipped on the marble floor, and I went down.  Broke my ankle, they say, and injured the knee.  

 

Pyoderma lesion looks good, though, doesn't it?

 

Sigh.

July 11th, 2009

 

I'm home.  Dad's doing much better, and I'm keeping track of his progress, but I was able to move back home this past week.  It's so good to be home, I can't tell you....  I love my Dad bunches, but "There's no place like home", even when you're living next door rather than in Oz.

 

Oz would be nice, too, I guess.

 

I'm using the leg much more.  In fact, I just came in from a trip around the yard to take pictures of my daylilies.  I'm using the crutches, but am also going with one crutch and can take a few unaided steps more and more.  The knee hurts ... it has a long way to go before it'll be back up to snuff, I guess.  

 

And night before last, when I unwrapped, I discovered an odd "blister" on my shin.  That's the only way to describe it, an elongated fluid filled sac raised on the skin.  I took pictures last night, but it's hard to see in them.  It shows up as a red spot, but it's actually, quite literally, a blister.  I wonder if there had been a gap between the panty liners I spread the honey on, which "sucked" some skin (which is still so thin and fragile) up into it, causing the blister.  I thought that when I discovered it, and thought it would be gone in the morning if so, but it's still there.

 

Other than that, things are about the same, I guess.  That last bleeder is still healing up, though it doesn't look like it's going to bleed again, and there are a few other spots which are bulging slightly as if they might try to pop, but haven't so far.  The leg is sore, most likely because I'm using it so much more, and last night I was uncomfortable for the first night since moving back home. My ribs were hurting, too.  I spent several hours cleaning out a floor-level clutter collecting cabinet yesterday, bending over from a seated position in a chair.  Probably not a good idea under the circumstances.

 

I'll be fine.

 

Since I haven't been using the xeroform, it looks like the yellow gunk is slowly going away.  Just a bit at a time, but I think it's doing better than it was.  

 

I really...

bleeding again
Damn.

I've been living at my dad's since the 2nd, when he came home from the hospital with five broken ribs and a heart rate that keeps dropping into the thirties.  It made him black out, he fell ... and he needs someone here with him for at least a while.  Not that I'm all that much better than he is, but hey.  At least I can call 9-1-1 fast.  

The day he went into the hospital, I was sitting in the chair (after having, once again, moved up to part time chair, and most of the time crutches), bent to pick up the dog's dish from the floor, and heard/felt a "snap" in my lower ribcage.  I kept telling myself no one can break a rib just bending over, but the pain was pretty bad, and I began to baby it.  It was feeling better when, the day before Pop came home, I was pulling off my jeans at night, bent slightly, and "snap" again.  Much worse that time, and it's still hurting.  

For a few days, after moving up here, it actually hurt less on the crutches than in the chair ... but I had to walk.  Walk - walk, as in put weight on my foot, as placing the weight on the hand grips on the crutches really hurt the ribs.  Then, however, it got too painful (leg and ribs) to do that so I was back in the chair for two days.  Yesterday, I started getting up and "walking" with the crutches again a bit, as I just cannot stand the thought that I might be in this g-d'd wheel chair for the rest of my life.

This morning I got up to the following (once again sending via cellphone to this blog directly).  I had looked at it, and thought it looked like the little spot that had "dabbed" blood for a few days might have formed one of my dear little "bubbles" underneath.  I got into the chair and rolled around toward the bathroom.  Pop asked how the leg was doing, I looked down, and found that it was not "doing" well at all.  There was blood streaming out of the "bubble" area.

I just can't freaking win.  



                                                  "Pop Goes the Leg ... again"


I'm still on the 10mg prednisone per...

Got a couple pix on the way back to the bed this morning, before I wrapped it back up.  These go with yesterday's text.  You can see the bleeding spot in the top photo.

 

May 1st, 2009

 

I'm unwrapped.

 

With the advent of warmer weather, though it's cooler today than it has been, I've noticed that the scar tissue is getting a bit mushy again.  The manuka honey had helped that a lot, and it's nowhere near as bad as it was ... but it's definitely more tender than it was a few weeks ago.  In my eyes, the progress toward healing has slowed down.  I'm seeing bruising under the skin, though not actual bleeding, and have a spot that pulled apart a bit yesterday when I removed the bandages.

 

I'm still using manuka honey on xeroform, covered by panty liners, abd pads, and kling wrap.  I then cover that with the ace bandage pressure wrap if I think I'll be up and around.

 

Some pictures today to illustrate the above.  I'll intersperse more update between them.

 

 

That brownish spot, horizontally elongated, is, I think, just bruising.  It's odd that it's brown rather than the usual deep purple (it's not as red as in the picture).  Over on the left side of the picture you can see a small tear about a third of the way up from the bottom, which is the spot that pulled away when removing the bandages.  It's looking better today.

 

This shot also shows how there is more yellow slough again.  That had nearly gone completely away.

 

 

 

Yes, above is the spot where the pipe veins were.  That does continue to impress me.

 

 

Just an overall view of the front. Some more veins are showing up toward the knee.  Again, the over all photo is pinker than the leg actually appears.

 

Just today I tried putting more weight on the foot only to have the problem spot once again pull and stab at me.  I have been very gradually putting more pressure on it, but haven't actually taken a step yet.  I'm waffling between "Am I babying it too much" and "What if I try to go back to where I was an injure it again".

 

I had yet a third person contact me through that video on YouTube.  A one in a hundred thousand chance of getting this disease, and four of us have found one another through that video.  I shold post a...

All in all, as I look back on photos from past entries, I can still see that there is a great deal of progress, especially since starting to use the manuka honey.  My leg is getting better, there's no doubt of that.  The scar is much healthier looking, the skin stronger.  I can touch it now -- it's not scary or painful.  That sounds strange to finally be saying that after all this time, but that's just how it's been.  I'm mostly on one crutch now, but it does grow painful as the day goes on, so after supper time most nights I find myself grabbing the second one.  Sometimes, in the evenings, the skin hurts enough to feel like it's going to split.  It hasn't ... and after opening the wraps each day to see that things are still looking fine, I guess it probably isn't going to.

 

The below picture shows that tiny spot that is still there, and the other bruising under the skin where the old bubble broke.  Apparently there are still weaknesses in there, but I am guessing the coumadin has as much to do with that as anything.  (My level was a perfect 2.4 Tuesday, by the way ... and now I have to find a way to get back there on another Tuesday.  Sigh.  I wish I could just drive myself -- and had a car to do it with.)

 

Don't be alarmed by the third photo in the segment -- it's just an older one, from a month ago, that I pulled in for comparison.

 

Above, photograph from today, compared to, below, photo from March 11th, just over a month ago.  

 

 

A huge difference in that amount of time, with those "pipe veins" which are no longer pipes.  Even though I'm walking on the leg regularly, they don't seem to be suffering, and are still steadily improving.  Oddly, though, that is one of the spots that still hurts.

 

 

The outside of the leg.  The darker brown section toward the bottom of the picture is old scar -- and quite tough.  I'm not even covering that section with the xeroform now.  In fact I'd love to ditch the xeroform all together.  The last time I tried, though, the panty liners stuck worse than the xeroform whe...