Hello from beautiful downtown Austin Texas. It's been quite a while since I have visited this site. I hope all is well, especially you Mikey.
I'm in the hospital, have been since Aug 18th (after a week visit 2 weeks earlier) with a decubitis ulcer on my sacrum. I was incredibly ill - down to 110lbs (@5'11" I looked immaciated).
I'm sharing this with you because I hope to perhaps preach to the choir or educate newbies on how fast the smallest little tear in your skin can turn into a medical nightmare. Take care of your ass (that's for Mikey). I would measure the size of my ulcer to equate a large orange with the depth of 1/2 inch, to the bone with tunneling to 1/2 inch. I now have a 7 inch scar where I had a flap surgery done.
It is by the grace of God that there is a catholic charity hospital chain here - Seton medical center. I am uninsured, my husband has literally kicked me to the curb, has placed my things in storage and changed the locks on the house. That is another story. The point is I am homeless and they are keeping me here until I find a place to go. I have applied for SSI and Medicaid. I didn't qualify before because they counted hubby's income. Now he is out of the picture and I have at least $250K hospital bill.
I have had 6 weeks of IV antibiotics because the infection of the ulcer was in my bones! Can you believe that could happen? I'm not sure how much worse it could have gotten, even with home health nurse and daily attendant. Please note, they were on board after the monster had started to grow to epic proportions.
I guess the reason I am passing this along is that even though I was relatively healthy, had good personal hygiene, this little tear from transferring from my chair to a car without my sliding board tore my backside ever so slightly and I didn't take proper care of it.
Since I have been here, I have learned so much about how protein levels are relative to healing and overall nutrition making a huge difference for we who use wheels to get around.
So, share with me any tips you may have for post-surgery transfers as I'm now just getting my strength back and don't even have the wee bit of upper body muscle back.
May God bless you all.
Pink
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Decub from hell
- By pinkharleygurl
- Posted November 5, 2009 at 12:02 am · 6 replies
- In Health matters
- Shared with the public
6 replies
- Oldest first
- Newest first
- By mikey
- Posted November 5, 2009 at 3:45 am
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I am sorry about your ass Pink. You will probably have
to go into a nursing home for a period. I am going to inject my personal opinion that is reflective of my situation and I feel is appropriate for yours as well.
There may be some people who disagree with me,
but I don't care. To make my point I will express myself in all capital letters. Also in deference to you being a lady with a lot of class, I will refrain from truly expressing myself. But if you feel the need, feel free to augment my expression as you see fit. Now take a
breath, collect your thoughts and EXPRESS YOURSELF
with soul and conviction.
PARALYSIS SUCKS!!!!!!!!!!
p.s. We have a president who is really trying to
address a very serious domestic problem. He is the first president to attempt to resolve it. He should be able to do it without a bunch of name calling by
idiotic RIGHT WING ZEALOTS!!!!!! Again in deference
to you being a lady with a lot of class, I am refraining from truly expressing myself.
- By hatixhe
- Posted November 5, 2009 at 10:20 am
- Report post
Hi Pink,
I am so sorry for all of the horrible things that have happened to you in such a short period of time. I will pray for you and hope that it all goes well from here. Just keep the faith and never let go of your hope. As for your husband, good riddins to him. In your time of need he should be there for you, not walk aaway from you. Thats how you know who really does and doesnt love you. You are not alone, and I am sure that everyone here reading your post is praying for you. Good luck!!
TJ
- By horsestail
- Posted November 5, 2009 at 6:58 pm
- Report post
Pink, This is awful. My aunt was left on the ward with the dying when she was paralyzed at age 16 back in the 1940s and she ended up being left lying in her mess. She ended up with some really bad bedsores and it seemed that after that she would always have issues with them. Last December they thought they were going to have to take one of her legs, but I don't believe they did. Unfortunately all of this took a toll on her and she passed away May 2nd of this year after 60 years in her chair. Those last 5 months were extremely hard on her and her husband of 51 years. He said she was all bones. It is so important to make sure to care for your self and get someone to check you. My cousin a few months ago had to have both legs amputate as an infection turned into gang green.
Mikey is so right, Paralysis sucks.
I also ate to hear when ones partner is so cruel, but it will one day come back to bite him. It is good that you have someone helping you and hopefully you can find a place to live. Check your area for community long term care to get help as someone can come into your home instead of going to a nursing home. Are you on Medicare and/or Medicaid? I would think you qualified.
Good luck!
Take care,
Gloria
- By pinkharleygurl
- Posted November 6, 2009 at 1:36 pm
- Report post
Howdy y'all,
Thanks for the replies. Mikey, I love you!!!! I have been set ablaze in my heart with the concept of what the prez has initiated. While there is no funding in what the passed legislation made into law, and the limit of the scope, which on a national level is understandable, it is a beginning. I am on a mission that no other woman in a situation as mine will ever "fall thru the cracks" again. I'm speaking about the faith-based initiative.
I did not qualify for SSI due to my husband's income. Now that I am homeless I have applied for both SSI and medicaid. Can you imagine what this hospital bill will be? Three months, 3 surgeries not to mention x-rays, CT, MRI, etc? Being uninsured sucks too. I wish I could read the healthcare reform bill before making a judgement. I think again the prez has the right idea, but I've not been happy with the bailouts (look at Ford) and think that whether contracted or not, no bonus should be paid to executives who run a company that needs a bailout. How much good could have been done with those funds? No more right wing preaching just for you Mikey.
Thank you all for your prayers for I know God hears them all, he answers them and blesses those who pray. Pray with thanksgiving because this situation will be turned into something good. I have been tested for quite awhile; hence, my absence from my friends on this site. I've been hospitalized for a suicide attempt, forced just for a matter of hours into a nursing home that smelled of death, lived in the guest room of my home, lost almost all visitation with my children and am estranged from family who just came back into my life as a result of the accident. It is quite a testimony as only for the grace of God am I even here to talk about this.
I no longer look like the vibrant, healthy, happy gal in the photo. But my smile is back and I'm laughing again. I have hope for a purpose.
Thanks again for the posts. It feels great to be back with my buds in chairs. That could be a cool country western song. My buds in chairs, the ponies don't care. They still let us ride with wind in our hair........
God bless,
Pink, aka Diana
- By mikey
- Posted November 7, 2009 at 7:19 am
- Report post
Check out this link for help with your healing.
http://www.metacafe.com/watch/932832/electric_bandage/
- By DianaJ
- Posted yesterday at 7:26 am
- Report post
Hi Diana,
My name is also Diana and we are the same age. Your post got my attention for a few reasons--- First let me say that I wish you a complete recovery and for you to get your strength and better health back. It's amazing how those weeks in bed take such a toll on us. My doctor says it can take a week for each day spent to regain strength, but some of us are better at it than others. You seem like a spirited woman and one who will not go easy, but do take care and watch your ass!
While I'm not in a chair full time and rarely use one anymore, I do spend most of each day in bed and little time "walking", which is very difficult and painful, though I can do a bit. Being in a chair sucked enough to prompt me to get out, since I could, but now I usually refuse to use it, feeling it would be backsliding, while really, it might be better for me than taking so many falls and wrecking the few parts of my body that are still okay. Any of us who cannot feel our butts and spend time sitting or in bed are at risk, and these terrible sores can kill--- we all remember others on this site that have died.
No matter what the bills and such, you were lucky to have had the chance to get treated at Seton. I don't know if it's the same "Seton", but I initially found my first "Pain and Rehab specialist" at Seton in Daly City, CA. I didn't like the hospital there, where I had my third surgery, but the doctor was first rate and did a great job. I didn't get any decent post-op care or any rehab, but was discharged soon enough to make up for that at home as I had been coping at home for a year. That recovery was much better and quicker than the first two, the first of which was the cause of my cord root injury. Gross Malpractice--- another story for another time.
It has been sixteen years now and I am still having a lot of new troubles all relating back to that injury. My ex managed to con me into putting the 400K I won from that first quack into a joint account, promising better interest on the money and not to spend it. I was too sick to keep up on those things and never got out to see the huge shop in the back of our acreage, which he worked on constantly, blowing all the money and then losing our house to foreclosure. He had refinanced almost every year, adding debt of up to 100K a year... He baled on me two years ago and my medical insurance is about to expire, unless I can figure out what to do at the end of a Cobra stint.... My daughter said check out HIPPA--- does anyone know about that?
I do not qualify for SSI, SSD or anything else, but did inherit enough from my Mom that I was able to buy a home, which I moved into two months ago. Now I have a lot less money and am terrified I won't be able to keep it. I can't believe how many little things need to be fixed and how those expenses add up, plus it cost me a whole lot more to move than I had ever dreamed! Not to complain, so far I have been very lucky in many ways... but feel as if I will be forced to do something I don't want to do if I end up uninsured. My medicines cost 1,500 a month, cash, if I don't have insurance. I would rather check out of life early and leave the house to my three daughters than lose it all to paying medical bills... I only stay sane sometimes by keeping the suicide option open in my mind, not that I want to leave my family, but feel like I won't have the choice. Also, the pain I endure is a nightmare, even with all the meds and I need surgery again.
With the luck I've had with surgery and hospitals, I have been having a hard time with that idea, but have to do this before my insurance runs out, so am pushed to go ahead. My whole uterus, bladder and bowels are falling out--- actually several inches external now. Lovely to be like this at fifty, or any age. It doesn't allow my bladder to trickle enough to get even partly empty and it's like a messed up puzzle to try to cath, so I've been very sick with bladder and many kidney infections this year, which I had not dealt with before. I know the surgery is necessary and that I will feel a lot better about that "end" when it is done, if it is done correctly, without complications, but most of us know that's a crap shoot.... hospitals, doctors, etc... Who can you trust? I am going to a surgeon recommended by the one doctor I DO trust, so hope for the best.
The last thing I can write amongst all this babbling is that since I am ambulatory, I was able to fall in love (again) with Harleys and the attached biker and until my sweetie left me a couple of months ago to go back to an ex, I was riding often... I miss it tremendously and even considered learning to ride myself---- a Harley, but with my very weak legs don't know that I could even hold it up while stopped and the idea of riding a trike, which I know some other disabled bikers do, doesn't appeal to me as much.
Reading your profile story makes me wonder if I should just get over it. I don't know how to find a boyfriend who rides...... I'm 6'2" standing, so to find a tall man is hard enough, to find a compatible tall man, very difficult, now one who rides a Hog..... Hmmmm. That last one sure spoiled me, but I had the best time of my life for a good part of a year and know I would have been happy to "go out" riding!
It was just interesting to find a Diana who likes to ride, got thrown away by her husband, is the same age, etc... If your Seton is in CA, let me know. Perhaps I might be able to help you with finding a place, or might have some room here in the Redwoods--- a very healing place!
Your ex made a big mistake and should be made to pay for at least a good part of your care. Please have a session with a lawyer as soon as your health allows. Some will see you wherever you are, so you may not have to wait. The longer you wait, the longer it might take to get some income, providing your ex is still employed and you know where he is.... Sounds like you do, so get that taken care of.
Take care and get well and strong!
The "other" Diana
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