Free at last!

Since I published the blog below, a few people suggested that I put it in as a discussion because many people ignore blogs. I, for one, do that once in a while. So, fans of the macabe (sp ?), here it is:

Well, ladies and germs … errrr, gentlemen(!), they have finally let me out of my cage. I’M FREE, I’M FREE. THANK GOD I’M FREAKIN’ FREE!!! (Yes, I know I’m shouting. I just couldn’t contain myself.) After over 16 months in rehab, I am O-U-T. Even though “they” fought with me long and hard, I won out. Actually, it took months for my stubborn head to wrap around the concept that, if you ain’t gonna be happy being lead around like a little child for life, ya gotta … now wait a minute and listen … ya gotta advocate fer yourself. Because, if you don’t, there aren’t many out there who will step in for you. To be honest, though, it didn’t start happening until I brought in an Ombuds[wo]man from Disability Rights Wisconsin. Man, she made them MOVE!!

In case any of you reading this aren’t familiar with what I am talkiing about, you might want to check out my blogs, discussions, etc. Yes, it’s all true. My life has been one h-e-C-K of a journey (or, as I have called it, a SAGA) for the last few years. It started just a few monrhs after I joined TU and didn’t quit for any length of time. I was in constant physical attack that lead up to a BKA (below the knee amputation) and my incarceration in the rehab/nursing home from Hell. (Not a swear word, but designates the actual location!)

In the 1st week in July, we let the home administrators AND my case manager, etc. know that I wanted a particular apartment of my own (NOT a CBRF – Community-Based Residential Facility aka group home) and I didn’t want their reasons why I could NOT accomplish this goal. We (me and my ombuds[wo]man) told them that they were going to do all the things that would make it happen. They had to get the State program to financially assist people in nursing homes to move into the community. In my case, it was for 7/15 - 7/31 rent and security deposit, a visiting aide for 2x/day/2 hrs ea. and 7 days/week, physical equipment and moving help. They dragged on about how I didn’t belong on my own and I say, “Who the he** do you think you are passing judgment?” (This was meant as a swear word!) I am finally here! In a 1 bedroom, living room, kitchen and bathroom of my own. HUD housing to boot!

The first two weeks were scarey. I had some really difficult emotional swings and one heck of a bunch of crying jags. I had to fend off the dreaded cardboard box blues and one of the hottest (and humid) weeks of the summer in years. I have no air conditioning and have not been able to dedicate the long and tough hours to unpacking. On top of that, I have the world’s lowest toilet! (It seems that way to me, anyway.) I am still unsure about how to get on and off my own throne (low as it is); after all, I haven’t used one in 16 months! I am now fearful of using it when I am alone because of fall potential. Soooooo, let me tell you about my trick commode. Yes, I said TRICK! Just when you think you are all done and proud as a tot being potty trained, the bottom falls out!! Yes, I said the bottom (pail or whatever) falls out. Not for just a little wee wee or ummmmmm (you get it), but even for a lot. That happened 3-4 times. Twice on the tile floor of the bathroom and then on the carpet in my bedroom. Now I’m REALLY afraid to use the facility with nobody here!! Y’all might think this is funny and a great big lie, but I’m dying if I’m lying! Swear to God! Not good. Especially if the aide scheduled for that night doesn’t show!!! My room now smells like a nursing home. UGH!!

If anybody thinks this is the end – think again! It’s just a different phase of my saga. Just different circumstances. At some time in the late winter months, I actually ruptured a tendon in my left index finger. (Boy, does this play havoc with someone who used to type 106 words per minute!) It wouldn’t bend at the furthest joint. Then some months later in the not too distant past, the other tendon went. Now I can’t use that finger for anything. Can’t even pick my nose! (OOOOOO, yucky!) LOL Surgery was set for May 22nd (?) and on the day of the surgery the nurses discovered I had developed a severe case of cellulitis and massive bruising of my lower abdomen from the shots given to ward off clots while going off my blood anticoagulants. Cancelled the surgery just minutes before it was to happen. After I had a chance to heal, it was set again for 7/22; but that date cancelled due to severe inflexibility in the finger. DR wanted me to do some PT for a while and, also, I was scheduled to move just the previous week. I went to the DR today and he started playing around with it and I actually started being able to bend it on my own power without forcing it with the other hand!! I couldn’t believe it! A miracle; albeit a minor one! Surgery is now set for 9/1. I also asked Doc that, as long as he was going to poke my sausage-like finger, would he mind doing a release of a spot in that hand’s wrist. Two for the price of one. How lucky can a girl get!!!

One other thing comes to mind that has taken a back seat to other issues so many times. After so much unexplained pain and swelling in the hands for more than a year, nobody could explain it. They only told me it was NOT Rheumatoid Arthritis. Finally, just 1 or 2 months ago, a Rheumatologist called me back in for more definitive x-rays because of some things she saw on x-rays of my broken wrists that an orthopod took. Final diagnosis ----- Seronegative inflamatory disease! Yes, rheumatoid arthritis; one that doesn’t show in the blood! So, there are one or two lessons to be learned here. One is to believe your symptoms. Your pain is real and there IS a reason for it. The 2nd lesson is to pursue, pursue, pursue. Don’t accept a diagnosis of “pain of unknown idiology.” The only person who is an idiot in that case is yourself if you don’t press them to discover what someone else may know. (And what your body already knows.)

I know this has been a really long blog, but I have been promising to let my friends in on how I’m doing. It’s not over, though. Not by a long shot. I still need all the prayers, good vibes and helping hands I can get. The last one is tough, though. I would really like to get unpacked and settled in before I can’t use my hands. I want to get 30 years of stuff out, classified as to keep-ability (!) and/or marked for rummage sale. All before 9/1!!! I can’t stop tripping over things until I get some of the boxes out of my way. I can’t get boxes out of the way without a place to put things. I have to store the rummage sale stuff before I can sell it and I have to clear up space to put the “keepies”. SSSSSSiiiiiiiiiiggggggggghhhhhhhhh!

Any volunteers? I live in the Bay View area of Milwaukee, WI.

End for now. Never say goodbye!

Congratulations on getting out! What a wonderful feeling!! :slight_smile:

I sure understand the nursing home experience. I was in one for 3 weeks last year, and that was MORE than enough. 16 months would have driven me crazy!! You’re a strong woman for enduring that!

While your problems are serious, I have to say I enjoyed reading your story – what a wonderful attitude you have, and it shows in your light and humorous writing.

There is a blog on Diabetes Self-Management written by Jan Chait, who just had a below-knee amputation. You might enjoy reading her – she has talked about adaptations to make life easier when you only have one leg, and completely understands the rehab problems since she went through them herself.

Good luck and take care of yourself – and keep on fighting the good fight! :slight_smile:


Thank you for comments on my blog/discussion. It’s good to know that people can see the humor I try to inject into my writing. Without it, I would have seriously circled the drain while incarcerated in Birchwood!! Too bad I didn’t take up writing in high school. Or, maybe, it just needed to be brought out by the personal tragedies that befell me in my old age!

Where do I go to get the things written by Jan Chait? Remember, I am very nervous playing around the internet. You don’t know how much courage it took for me to start contributing here!


Well, I’m proud of you for your contributions. I think you are stronger than you realize and have a lot to contribute! :slight_smile:

Jan’s blog is at

You go there, and there is a section which features the blogs, and you can find Jan. I know her personally, and saw her at the AADE meeting. She is a very cheerful person, but also very assertive about getting her needs met. I think you’ll like her! :slight_smile: