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shevan 
6:13pm, November 3, 2009
So my girlfriend saved me that night, bringing me home from the ER. I could walk the next day, but slowly, painfully. I felt black and blue from the fall. I used a walker as much as possible. Then, two nights later, I was in the kitchen, sans walker, beginning to warm up some leftover Chicken Marengo for dinner. The phone rang - it was my other girlfriend I had reunited with after 40 years - another Oregon State dorm mate - and she had heard from Nancy about the fall. She insisted she come over and bring some Aloe lotion to wrap around my knee - it had a warming effect. She sells this and other nutritional products, which she and my friend Nancy paid for for me to try it for a week. Honestly, I don't know if it was the placebo effect, or what, I couldn't tell if I had more energy - I thought so, but who knows! As I went to the bathroom thinking, "Shit - why does she have to come over and interrupt my dinner - I don't WANT to have this woo woo shit on my knee!" As I stepped into my Master bathroom, which is tiny, I stepped into a cool puddle of dog pee. DAMN!! Like I said before, I take these buggers outside every few hours for a potty break! So I turned on the water of the walk in shower and stuck one foot in it, trying to rinse off the pee. Then I took it back out of the shower and stuck in the other one. I tried to "rinse off" the pee by sliding my foot over the shower entrance base after I got it wet. Then I had both feet on the linoleum of the bathroom. Then, unbelievably - because I didn't take a step - I went DOWN! My feet went up from under me and I went down to the floor in another tumble of arms and legs, grabbing the small, flimsy towel rack on the shower door in the process and breaking it off. I was in terrible pain this time, too. I was moaning and turning on my tummy to crawl my way back into my bedroom to the bed - perhaps I could TRY to rise (again, with MS, this is extremely difficult sometimes). I did get there, to the bed, and the shower kept going - I couldn't get up to turn it off, so I thought "Damn - I'll have a huge water bill if Christi doesn't get here soon!" Christi came after about five minutes, and entered the bedroom as I still have the front door unlocked. She turned off the water. I asked her to help me get up by getting on the other side of the bed and grabbing my hand and pulling with all her might. She did so, and I miraculously heaved onto the bed. Christi wrapped my grossly swollen knee in saran wrap after she massaged the warming Aloe cream over it. So that was fall #2!
Fall number three came about four days later. I was using my walker, and it was about eight or nineish at night. I went to the kitchen, put the walker to the side of me, and opened the refrigerator door,for a nosh. BAM!! Down I went - my knee just gave out! Since I have a galley-type, narrow kitchen, my head cracked smartly against the bottom cupboards - and I briefly saw stars (it's true what they say)!
The next day I called my internist and made an appointment. Nancy had rented a wheelchair and a "porta potty" for my bedside. I literally couldn't walk! She took me in her SUV (difficult to hoist myself up into it - even the back seat), and we went to the doctor. She was adept at wheeling me around, which was surprising - I didn't know she had that skill. At my Doctor's, he had me go downstairs to X-ray and I had my legs X-rayed. My foot had blown up to about three times it's size. My knees were swollen too. The X-ray didn't reveal a break. He said he would order home care for me - a nurse, which he did. He also referred me to an orthopedist. He called me a couple hours after my appointment with him and said his X-ray technician HAD found a tiny fracture on the tibia (shin bone, I believe)! I called the orthopedist and made an appintment for two days later.
Nancy hauled me, wheelchair and all, to the orthopedist, too! I had X-rays there. The doctor found I had BROKEN MY LEFT ANKLE! My foot and knees were hideously swollen. He had an assistant put a "pneumatic boot" on me - a huge contraption that was made of plastic, rubber, metal, foam and fabric - with a shin-guard type thing placed over the front of it and secured with buckles and huge velcro straps. He said I had to wear it all the time, except when I showered or bathed, and I had to SLEEP in it! I was very depressed about this, to say the least. Then he said make an appintment to see him in three weeks, which I did. On that day, still to come, June 9, I will get to abandon the boot and be fitted with a KNEE STABILIZER!
That was on the 19th, I believe, and I have been in hell. I had one shower before that boot, and since, none. I needed a grab bar for outside the shower in order to shower safely. Forget getting into a tub. I have a walk-in shower. I have a shower chair. I had been tooling around my condo (ll00 sf) with the wheelchair, my big boot sticking out from the chair as I can't drag it on the ground because the toe section is rubber and it would "catch" and pitch me forward onto the floor. My condo is NOT handicap accessible! Nancy took off my bedroom door, and the physical therapist the ortho ordered for me removed the bathroom door in my bedroom. I have not worn the boot every day. I only slept in it two nights - that was all I could stand. How do they expect people to sleep in this thing? The boot has two portholes on each side - you take this bulb and inflate it in the holes when you have the boot on. If you take it off, you have to use the opposite end of the bulb and deflate it!
Nancy brought me food. She brought me beautiful salads with cranberries, arugula, walnuts, feta cheese from Whole Foods. She brought me my Diet Coke to which I am addicted. She brought me Haagen Dasz (Mint Chip - my favorite). She brought certain essential toiletries; . She brought me magazines; Harper's, Atlantic Monthly, Rolling Stone, "US Weekly". She came every day during the week, for a couple of hours. She walked the dogs, She went online and got 300 pee pads for $29 - a bargain - 100 are usually that price! I have since hired a neighbor kid who, along with his mom, walk the dogs three or four times a day, although I only asked him to do it twice. I give him $5 a day. That is a lot to a 12 year old boy! She has done so many things, and bought so many things I can't remember them all right now! She even bought a big bag of Pupperoni for me to feed the dogs from my bed. She bought soothing "wipes" for use after the port a potty, which go into the wastebasket nearby. I am able to use the bathroom for more serious business, with the wheelchair which I of course lock before I transfer to the toilet seat. She brought a beautiful flower arrangement she made with a trapezoid, thick vase, filled with orchids, flowering plants and curly willow - trez Japanese! She replenished it the next week when the flowers died! She went to the local post office to get the medication that the postman brought to the door but didn't ring the doorbell, and knocked which I couldn't hear from the back of the house., so he left with the meds. She went to the pharmacy to get pain medication the doctor ordered for me. This woman is a saint!!
The doctor said I should start using my walker - that was on the 19th. Today is the 30th. I must say, after two days with the pneumatic boot, my swelling went away 90%! It was amazing! I'm very sorry to tell you though, that I don't wear that boot every day, and certainly not to sleep! Many people come through this house. The door remains unlocked, and I instruct them to just come in . Nurses, physical therapists, occupational therapists, the dog walkers, my friends, Meals on Wheels (a lifesaver)! Every day there is a new obstacle. I just got a grab bar this afternoon installed, after the MS Society said they got me a guy who'd do it for free, and he never called. I got on Angie's list and had the bar that Nancy bought at Home Depot installed for $75! I have sponge baths. I feel rotten, filthy. I want a shower so bad, but Nancy couldn't come today - she is the choreographer of the "One More Time" marching band for Portland's annual Rose Festival, which happens every May and first week of June. I've learned how to water the dogs - I use a plastic houseplant watering jug with a long spout, put it under the bathroom faucet (the one across from the laundry room), and fill it with cold water which I then pour it into their bowl. I am able to scoop out the kibble from the big plastic drum in the laundry room, and fill their food bowls. Of course they always get part of my "people food", too, sucker that I am.
To say my life has changed dramatically, is an understatement. All these people walking in and out of my condo, every day. I have learned how to make a BLT from a wheelchair (Tip: microwave the bacon)! I can get in the refrigerator, the silverware drawer, the dishwasher, the kitchen sink. I have a new respect for the handicapped - their day to day functioning takes tremendous effort - how do they do it?
All I can think of is that shower. I have never dreamed a shower or bath would be so important in my life, till I couldn't have one. You go two weeks without one and see how you feel with "sponge baths". I am in Disabled Hell! Sometimes I wonder if I am being punished for something! I do, however, know what a wonderful, selfless, friend I have! That, is PRICELESS! I only hope I can be there for her, in whatever capacity I can with my limited mobility (and that was before the injuries)!
Gotta go - Nancy is on channel 8 right now - Portland's Starlight Parade is on TV, and she's sitting with the band during part of it!
TO BE CONTINUED
Comments
gosh..thank god for nancy! peace and get well soon!
sherryalton
hope you get your shower soon!
Just think, you'll look back at this one day and laugh!
feel better soon!
mooseyinn
Thanks guys! Moosey - I'm thinking I'll never be able to look back because it won't end - I'll have nothing to look back, ON!
shevan
"disabled hell" as you stated above is a brutal truth. I have fallen 1,000+ times with cerebellar ataxia, complete spinal cord injury, MS for years on end including through childhood. I dislike my wheelchair and permanent physical disability while I can't change though I can change my attitude about while learning and relearning acceptance that life as a corporate paralegal and life as I knew it as an independent adult has become increasing frustrating while very frustrating. Peace comes with acceptance and acceptance involves knowing that life as we once knew it is history. And, life with limitations is our daily reality. Try to focus on some things you are grateful for and consider journaling whether privately or shared @ DS. Consider all the things you can still do and search for peace to embrace you from deep within your spirit and soul. Btw, it's too bad the hospital didn't do CT's of the injured areas rather than just discharging you home. There are many things which can be done if an ER doc is with a clue and even tries contacting your doctor re: medications to give you i.e. an anti-inflammatory Rx med. They also could have done blood tests and CT scans as well. Sounds as if you were short changed and not listened to by ER docs who often overlook things. My neurologist, for example, has contacted the ER so that when I go after taking a fall that my severe pain and muscle spasticity is covered in a heartbeat. I've been flatlined by ER staff for giving the wrong medicine and wrong dosage. They called a code blue on me to revive me. I should have sued the hospital on that horrendous ordeal. I transfer from my power chair and if I can take 2 steps to reach the bathroom without falling and same with getting into bed - I've had a miracle blessing. I have three grab bars in my bath/shower and while my legs won't clear I need assistance and it's heartbreaking to me to need same at all. I miss my total independence lost though I am encouraged when I can do something against the odds of my physical disability even if it's not done by walking. Yes, friend, it sucks, though we must persevere and fight to not lose hope.
spiritedhopefulhealing
Wow - you have truly lived that hell but worse, for a long time! You're right - the ER doc did nothing but have my legs x rayed - then he said, "Your legs are fine." That's IT!! Yes, I should have had CT scans! I should have them now! I can't straighten my legs, yet my orthopedist told me on the 19th to use my walker! I have NOT. I can't WALK! I understand about the acceptance, but this is not supposed to be permanent - it just feels like it because its been weeks! BTW - I have been journaling on DS since I joined, in April of '08. Thanks for your lengthy comment, and you are a role model for living with a disability!
shevan
Jenn really is a role model and has much to teach and tell.
Sheila, let's get you better so you can lock your doors again.
c140cfi
I'm so sorry you're having such a rough time! I'm praying for ya, sending well-wishes & good vibes your way, hoping you bounce back SOON! Nancy is a gem ~ so glad she's there for ya :-)
You really need to wear that boot though ... xx00xx ~ Janice
JaniceKay
I want you all to know that Jenn has messaged me and told me I need to know my legs may not be strong enough to ever walk again. How she could say that to me is beyond comprehension. No doctor has told me that, no physcial therapist. I am extremely upset from that personal message.
shevan
Who's Jenn? Sorry, She, I've tried a couple of times to post something, apparently my computer has taken issue with me of late and stalls, then stops. I finally gave up last night.
I am very worried about your falling so much, so often. This is not normal and I am concerned that you could continue to have more falls and end up with way more damage. She, you could die if you hit your head on something in a fall -- and because you are alone, it's a viable threat.
Everybody who I've connected with who's in a wheelchair has had a lot of falls that led up to the chair. It doesn't necessarily mean that THAT is where your headed, but you'll want to be mindful of that as you monitor your progress.
(sigh) Keep trying to work on getting strong, it will help you no matter how things turn out for you, doll.
Hey, is there any way that you might be able to sell/buy or trade into a one-level condo? It might be something that you should consider at this point, yes? I know the market sucks to sell, but it's also great to buy too...?
Chin up, love, chin up, you can do it!
Love*M
LilMargie
To: shevan
Sent : 5/31/09, 1:01 am
Subject: Re: [none]
Hi Sheila,
I just sent you a journal comment. I hope it may be of some help/encouragement to you. My name by the way is spelled Jenn (two "n's" otherwise my name is misspelled. Please try to understand something for your continued journey. Your legs may not get strong enough to be able to ever walk again. Accessibility can be made to make your bathroom more accessible and other areas of your home. I have a ramp which my husband and dad-in-law built for me in 2001 so that my power wheelchair could be used to bypass the 3 steep steps into our home. Nothing else is accessible in my home except the bath/shower grab bars. I am anxiously awaiting and praying for the day to come when my family and I can move into a home with wheelchair handicap accessibility. I will pray for a peace of heart for you and your hurting heart.
~Jenn
On 05/31/09, 12:52am shevan wrote:
Oh, thank you Jen! I just want my legs to be strong enough to enable me to walk and to shower! God bless you!
xoxoxo
Sheila
spiritedhopefulhealing
To: shevan
Sent : 5/31/09, 12:10 am
Subject: [none]
Hello friend,
I just came online and will be getting offline in about 5 mins so I can be up early for church and busy day with my husband and daughter. In any case, I see that your ds is emotion is on "horrible. Is there something in particular I may keep in my prayers for you? Hang in and know you are being remembered in my heartfelt thoughts.
Peace,
Jenn
spiritedhopefulhealing
Jenn really is a role model and has much to teach and tell.
Sheila, let's get you better so you can lock your doors again.
c140cfi
spiritedhopefulhealing
When I was 1st dx I knew right then and there that the possibility of me not being able to walk someday was a reality that I never seem to dwell upon. It has been 18 years since I was dx and I can still walk, mind you not very well and not very far and always with a cane for the past couple of years. Nobody knows what tomorrow will bring.....We just have to live day by day and make the best of what we have. Try to stay positive and put that smile on our faces!
I wish you all the best
Hugs,
Sharon
mooseyinn
No one likes being in a wheelchair and losing independence. I was simply and only simply making you aware of the possibility. It's insulting to be called "crippled" so consider being more thoughtful with your words. And, next time you misunderstand someone why not confront them directly??? I have removed you from my friends list as you are NOT the kind of friend I'd ever want to have. Thus, I PRAY TO GOD that that GOD softens your hardened heart towards persons with physical disabilities. As you're very inconsiderate towards persons with physical disabilities who are NO less better than you because you are supposed to walk again.
spiritedhopefulhealing
I didn't know you were a "friend" and I am glad you are not any longer. I know many people with MS who use the word "cripple" tongue in cheek, and it was about myself, not anyone else. YOU are the one who can't take confrontation. I am not known for a "hard heart" as you say. Your comment devastated me - and I have a physical disability with MS - so how can you say I have a "hardened heart towards persons with physical disabilities?" That's just insane. And to conclude that I'm "inconsiderate towards persons with physical disabilites who are NO less better than you because you are supposed to walk again" is equally insane.
shevan
She - in 2001 I had an "assisted fall" down 8 steps and ended up with 5 broken ribs, a broken collar bone, a collapsed lung, and a brain hemorrhage. In 1993 I had another "assisted" accident and ended up with 2 fractured vertebrae. It took awhile but today I am completely healed. You'll heal - not to worry and you're right - how does this Jenn know your prognosis if the doctors said you will be fine. Gloom and doom never helps anyone heal.
LindaJean
Linda Jean, God bless you. Yours was the most encouraging message I have received. You're right - the doctors expect me to walk again - I don't have spinal cord injury or TBI. Your falls sound horrific - I am encouraged by your words - if you can heal from THAT, then I can heal from my much less serious injuries!
Luv,
S.
shevan
OH ,I am so sorry for the Fall's I can so relate to the pain. I just have something going on with my knee and I am helpless at this point. and the dogs need care. I know you will overcome this .
It just takes a little longer when we have a combo of injuries. dont rush it. sending you hugs and love . Katie..
nowandforever
Thanks, everybody! You lifted my spirits! You are truly good friends!
shevan
shevan, your friend, jean, excuse me "two nn's" jenn, is a piece of work. i think she lost her sense of humor and with a great friend like you. i have never cared how anyone spelled my name---it is difficult to misspell "skinny."
you know i care; i know you are reading this with tongue in cheek. you take care; more later.
lorrie (oh, jenn, if you contact me, spell the name correctly,,,,,please)
twinklee1
ROTFLMAO! Twinklee, I wanted to call you today, but I didn't have your number!! You're right - Jenn with TWO "n's" is a piece of work! But it is people like you who make up for it - you are wonderful, and yes, I know you care, as I care about you, too. I hope your pain has diminished, and you are doing some fun and/or interesting things lately! I threw away the broken cheese plate tonight, and it was hard to do - I liked it! Take your time about what you said about replacing it - I don't want you to feel pressure in any way, shape or form!
Love,
Sheila with "one S"
shevan
P.S. I should have used your real name - Lorrie with two "r"s!!
shevan