Author Topic: hello from the Flamingolady  (Read 2777 times)

January 28, 2018, 12:22:12 PM
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flamingolady

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Hi there everyone!
It's me, finally.  This is the first week that I've finally felt well enough to get into the laptop.  I want to thank everyone for the positive thoughts and well wishes.  It's been a rough road and I'm only about halfway there.  The surgery itself went well (well except that I pulled out the ventilator after, while under the anesthesia and they tried to say I was trying to commit suicide!).  Umm, don't think so, did this to live, I was trying to scratch my neck and see what all the wires were about.  there are much cheaper and better ways to commit suicide.  lawdy, crazy folks.  Anyway, the 70 pound mass was successfully removed, yay.  Got an incision from one side of the hip to the other, and up a bit on both sides, had over 150 staples, which are now out, yay.  I'm allergic to plastics, tapes, adhesives, latex, yada yada, so the (plastic based)  jackson pratts have left holes  all over the torso.  The front of my torso looks like a big ad for abdominal dressing pads, lol.  It can take 2 hrs for the wound care nurse to deal with.  also got pressure sores in bad places.  Basically, been a lot of pain and tears, but the pain is finally getting better.  There was a lot of cautherization of veins, rebuilding of 'parts', etc, so a lot of places I never expected are (still) swollen, to the point that I wasn't stable to stand, but doing so much better now.  Also, lots of appts with phys and occup therapy twice weekly, that just stopped, until I un-swell, can't do more.   I was really surprised that one of the surgeons said it could take up to 1 1/2 YRS to get back to normal, yikes, never expected that.   Anyway, that's the gist of it, well that and dealing with insurance and medical issues. 

Brynn, thx for keeping folks updated, appreciate it.   I also could not believe they kicked me out of the hospital after only a week, but that's how it's done now, they don't want you to get the illnesses that are in the hospital, (staph esp).  Insurance (mine anyway) now goes on the assumption that you have access to a personal caretaker (I don't, it's just me and the hubs and he is doing it all, plus trying to work from home, and he has medical issues as well).  Example, ideally, I need the bandages to be changed daily, but insurance will only send the nurse out twice a week (and they don't do weekends).  They expect you to chg it yourself.  Really?  I can't even reach half the places (hubs has issues of his own so he can't chg the bandages).  It's crazy.  And I have the largest insurance company in the US.  (Don't even get me started for the need to insurance chg and natl healthcare in the US.....). lol.  Anyway, even with some minor complications, I am on the right track, and I'm so grateful to have been given this chance at being back in life again, even if it takes months.  Have to go back to the hosp to get the IVC removed still, things like that.

I'm so thankful for my friends, family, FB friends, Inkscapers, and hubby for your support and positive thoughts, it's really helped me on this rough road.  Most of all, thankful to God, without His promise via the lady who came to see me out of the blue, and spoke in tongues (God's language), that I would be restored to health, I would never have been able to do this.  (I'm only about the 9th person the surgeon has done, and some have not survived, that's how rare this is).  PS, if you know anyone who has lymphedema, please send them to the FB group for support and info.

flamingo hugs to all!

January 28, 2018, 12:58:18 PM
Reply #1

brynn

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 :yay:  Hey, welcome back!

I can only imagine how exciting it must be, to have this 2nd chance.  I'm like you -- if there was something I could do, to get back to an active life, I would take it in a flash.

one of the surgeons said it could take up to 1 1/2 YRS to get back to normal

Does that mean you won't know how much better you can get, until then?  I mean, better than your previous "normal".  Or does he mean that long to completely heal from the surgery?  Do you know what I'm trying to ask?  Or do you already have some signs how much better you can get?

Well, congratulations on making it through!  We're so happy to "see" you back in the forum!
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January 28, 2018, 04:13:02 PM
Reply #2

Moini

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Wow, this sounds like you've made it through a lot, flamingolady - congrats + welcome back :)
Looks to me as if you already know exactly what you plan to do next, with your new freedom! Hope that's going to be possible rather sooner than later!

(I probably shouldn't say this here, but when I read this description, I can't avoid to think that I'm glad that our health system here is better at taking care of people... personal caretaker? wtf...)

January 28, 2018, 06:57:17 PM
Reply #3

brynn

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(I probably shouldn't say this here, but when I read this description, I can't avoid to think that I'm glad that our health system here is better at taking care of people... personal caretaker? wtf...)

Yes, our system definitely is not set up to handle patients who live alone and have no family (or whose family is ill-prepared to take care of its own).  It relies heavily on the family for personal care, such as bathing, wound care, medication, or other things like transportation.  But I have a feeling there are areas where our system excels over Europe's.  I suspect it balances out, overall.
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January 29, 2018, 03:17:28 PM
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flamingolady

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Everyone, thx much for the kind welcome back and healing comments!  Good to be here, let me assure you! 

Brynn.  I believe the 1 1/2 yr thing is in regard to things totally un-swelling and physically getting back up.  Surgery won't take away the actual illness.  I may be naive, but I don't think it will take that long.  My healing got side tracked and with my other illnesses, I had a rough start for things even starting to heal (esp when you don't eat)., but I'm doing pretty good now, maybe slow, but that's just me.

re: healthcare.  I think the US may have one of the top - if you are rich enough and can afford it.  What good does it do if say you have cancer and need long term radiation and chemo, and surgery, if you have no caregiver to help you?  It can have a derogatory effect.  The US in my opinion has gone downhill.  About 20 yrs ago, I had an accident and had to be out of work for a couple of months, and had surgery, nothing major, I had a bad fall, fell down the outside steps and broke every bone in my feet, ankle, yada yada. They also brought me a bedside potty, walker (Durable Med equip/ DME).   For that injury, they sent out a health care aide to help with bathing, etc.  Compare that to today, major surgery, can't get health care aide, DME, or a daily nurse/person to chg the bandages.  Something is wrong with this picture. 
I will say I was in a really good hospital, and my surgeon was tops (rare to find a recon plastic surgeon who could have done this as well).  I followed the research from NIH Pub Med (www.nih.gov) to find articles which lead me to find him.  Been searching for 12 yrs!  took 11 to get the correct diagnosis.  We do have some very good hospitals and drs in the US. 

The crazy thing is that we have a severe lack of medical staff here, the US needs LOTS of drs, nurses, aides, techs, etc.  The traditional american youth no longer want these jobs - people talk about immigrants taking our jobs, but that's really not the case in most instances - amercians have gotten lazy and don't want to put the hard work into getting and doing these jobs, so many are now filled with immigrants.  We have gotten  lower on the placement charts (can be evidenced on FB, just look at the poor grammar, particular in the under 30's age group.  We all worldwide need to be getting and producing smarter/intelligent students, not getting worse.  Why has education here taken a back stand..... 
I'm just glad that I got this surgery when I did (2017), too many changes for the worse in 2018. 

February 22, 2018, 07:28:53 AM
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brynn

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Hey Folks,
I just had an email from Dee.  She's fighting an infection in one of the wounds from surgery, and is asking for good thoughts and prayers.  There's a longer post in her facebook account, although I don't have a link to it.  She sounds very strong, despite the setback, and thinks a round of antibiotics should take care of it.

I'm thinking this is when you just put one foot in front of the other, until your ultimate goal comes back into view.  Stay strong!
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February 23, 2018, 05:43:19 AM
Reply #7

Moini

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Sigh... :-/ I hope this won't keep her for long from making the progress she wants. Where's that fist image of yours, Brynn? Would be a good symbol for the antibiotics doing the bacteria in :)

February 24, 2018, 06:07:40 AM
Reply #8

brynn

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Haha -- here it is!



Hhm, maybe I should take some time and blur all those shadows, to look more realistic?
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February 24, 2018, 07:50:13 AM
Reply #9

Moini

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And maybe replace fate by germs?

February 24, 2018, 11:13:23 AM
Reply #10

brynn

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Aah, well when I made it, my health problem had no real cause, so I had to go with "fate".  If I have time (and if I saved the font) I'll change it.
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April 12, 2018, 10:18:43 PM
Reply #11

brynn

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Just got an update from dee.  She's continuing to struggle with pressure sores, as well as keeping stable with blood pressure and blood sugar.  Plus, a previously diagnosed benign mole biopsy, is now said to be melanoma (worst of all the skin cancers).  She didn't say why they had re-tested it, but she's hoping it's a mistake.

So she's asking for prayers, good thoughts, and healing energy.

On (what seems to me to be) the positive side, she's expecting that the IVC (otherwise I think might be referred to as a "central line") will be removed tomorrow, which I seem to recall she has been wanting for a while.

Personally, I'm thinking that having that catheter out will give her a boost, once she recovers from it (requires sedation to remove it).  She calls it 2 steps up and one step back.  But I think this will turn out to be the 2 steps up part.

This reminds me of a game we played as kids, called "Mother, May I?" here.  Of course, the kid who played "Mother" had all the power.  But I'll just play mother for now. 

Flamingolady, you may take 3 giant steps forward! 

(Don't forget to say "Mother, May I" or you'll have to go back to Start!)

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