The Quarters at Des Peres

I arrived here on the afternoon of July 30,2015. I sat in my assigned room for an hour or so and nobody came to see me (after an initial welcome from nurse Nicole). Later I found out that all the Admissions and Wellness staff had been at a conference at Lake of the Ozarks. My first few days here were rough. Having a broken left leg, I was unable to get around without help. A wheelchair and occasionally a walker became my modus operati. At first the CNAs spent a lot of time running into walls. One of them told me to bend my leg (which I wasn't supposed to do), one forgot to put the leg rest on the wheelchair meaning I had to try to hold my leg straight and up during the whole dinner time. Sometimes my medicines were forgotten, I didn't get fresh water, they didn't change and or straighten my bedsheets, etc. There were two aides who were outstanding-Dante and Terence. Once I could past the fact that a man was helping me to the bathroom, shower and get dressed everything was ok.

Monday I began Occupational and Physical Therapy-the real reason I am here. The therapists were outstanding. They were also very cautious.

I had now been here one week and two days and things had gotten a little better. The weekend aides didn't seem to be as on top of things as the weekday aides were. They skipped important things like showering, getting fresh water and attending to other needs.

From two current patients who had been here before I learned that the facility had changed hands twice within the last  years. They told me it used to be a much better place.

The Occupational and Physical Therapy programs are outstanding but the rest of the place-the nursing,aides,dietitian and food program and the activity director could use a lot of improving.

My day at the Quarters consisted of  the nurse bringing me Prilosec around 6:00am. Around 7 am I would get dressed at the beginning with help, later on my own. 7:30am was the start of breakfast. I liked to linger at breakfrast and talk to fellow patients until a therapist came and got me or I went back to my room to wait for a therapist to come get me for Therapy. Usually I had Occupational or Physical Therapy in the mornings, went across the hall to the dining room for lunch and then had the rest of the day free until dinner time. After dinner I had more free time until an aide came in to help me get ready for bed. Every day was pretty much the same for about a month.

On August 10th I had my first follow-up appointment with Dr. Wegman . It took longer to get there and back than I actually spent at the docotr's office. As a new patient I had to fill out lots of paperwork. Then a technician came and took me to get x-rays of my broken leg. She then took me back to an exam room. Dr. Wegman came in, looked at the x-rays and tol me that the bone had not moved out of place. He said he would have PT do more agressive treatment-they could take my leg out of the immobilizer, bend the knee gently and work on strengthening the quadriceps muscles. He told me to see him again in one month. I asked him about going back to work and he said "Let's just concentrate on Rehab for now. The return bus ride was really bumpy. The driver had run my bad leg into the wheelchair lift-both going and coming back. I returned from my doctor appointment not feeling too good.

The day after my doctor's appointment (August 11) I finally got to take a shower. This was much needed as I had only had sponge baths while in the hospital. For me, a shower is both cleansing and therapeutic-but not something I could do right now without help. I got a shower again on August 13 and was told that I should get one 3 times a week-on Tuesdays, Thursdays and Saturdays.

Saturday, August 16th came and went. As had become the norm, the CNA skipped helping me get a shower. They also left me wondering whether I was to wait for their help or get up and get dressed on my own. Today my legs and other parts of my body are really hurting. I asked the nurse for a Tramadol (pain med) which took a really long time to get.

 Also, that day I had only been given  20 mg of omeprazole (my regular dose is 40 mg). I would be happy to get home-where I could take my medicines at the right doses and not have to wait for a nurse to bring them to me. I learned to always look at the medicines I was being given and to  question whether or not I was getting the correct dose.

Sundays are weigh in days for patients at the quarters. The first two times I was put on the scale in my wheelchair. The weight of the chair was subtracted to obtain my weight. The next time I was acturally allowed to stand up on the scale from the wheelchair. That surely gives a more accurate account of one's weight.

I stayed at the Quarters until August 28th-the day when the nurses, therapists and other staff decided that I would be safe at home. My time there was bittersweet. I went from feeling really out of place to making friends with a lot of the staff and patients-many of whom I would probably never see again-or at least not under the same circumstances.

Life Goes on Anyways (continued)

In the ER I was in a lot of pain,mostly back,neck and left leg. Fearing I had a broken vertebrae or neck, the nurse put a cervical collar on me. The problem was that it wasn't the right size and it covered my mouth,making normal breathing uncomfortable. I asked several times to have it removed but they couldn't do that until they were sure my neck was ok. They also gave me dalauden for pain. That medecine, along with the wrong size  cervical collar caused my oxygen level to plummet. A breathing helped to remedy this. I was still complaining of back,neck and leg pain. Xrays turned up nothing. CT scan turned up nothing. I kept telling the nurse that something was wrong. I couldn't put weight on my left leg. Next in line to diagnose was an MRI. Finally, the MRI told them that I had a tibia plateau fracture and a torn ligament. Fortunately, no breaks in my back or neck,although I did have degeneration in my lumbar spine. Also a chest xray taken in the ER had turned up something not normal. I was admitted to the hospital. The story continues there.....

5 Days at St Luke's Hospital (on the Neurology floor)

Because I had had breathing problems while in the ER, I was admitted to the hospital. I was there for five days,most of which were filled with tests and procedures. I tried to think back and between the nurses,the techs and the doctors, I must have had 50 people in and out of my room. There was a nurse and a tech for every shift. That's six or more people. I saw Dr. Ahmed and Dr. Sommer(my regular doctors), Dr. Zaheer Ahe'd (a neurologist-since I was on the Neurology floor),Dr. Ruth Decker(thyroid surgeon) and Dr. Brian Wegman,orthopedic surgeon. I also had visits from respiratory who helped with my CPAP machine, the Chaplain with whom I had some interesting conversations. I was also visited by a social worker who arranged for me to spend some time at a rehab facility before going home.
Included in my hospital stay was MRI's of my left leg, back and head. These revealed a tibia plateau fracture in the leg, degeneration of the disks in the lumbar spine and an unspecified head injury. The ultrasound of my thyroid presented a small nodule. A chest xray taken in the ER found something suspicious looking which led to the ultrasound.
Wednesday afternoon I had a thyroid biopsy with ultrasound.  The nurse and doctor made it really clear that I was a big inconvenience to them. Usually they only do 3 of,these biopsies per day and they were doing my doctor a favor to work me in as the fourth. That might be true,but they didn't need to tell me that!!
Before I left the hospital I also had a session with their PT. I started to learn how to hop around on one foot,since my left leg will be non-weight bearing for up to 3 months.

My New Life Motto

It's been a long time since I've posted here. The past year has been filled with continuous health problems for both Ernie and I. These have caused me to adopt a new life motto: Life Goes on Anyways!!
This all started about September 2013. Ernie was complaining of shoulder pain that was constant and was waking him up at night. He finally agreed to let me make a doctors appointment for him,only to have the doctor cancel it because Ernie hadn't seen him in six or so years. Ernie ended up going to urgent care than to an orthopedic dr. Fortunately our insurance doesn't require a referral to do that. The orthopedics Dr tried all non surgical procedures (meds,pt,etc) but ended up doing surgery in February 2014 for a torn rotator cuff.
He was doing PT after surgery and at the same time started having lots of rectal bleeding. He thought he had hemorrhoids-but the bleeding was heavier and went on longer. A trip to a GI doctor and a colonoscopy discovered that what he thought was hemorrhoids was actually a tumor on his rear end. He had radiation treatments for the tumor,which is now pretty much gone. While looking for a primary site for the cancer,doctors discovered Ernie had cirrhosis of the liver. Once he finished treatments for the cancer,the GI doctor went deeper to discover the cause for the liver cirrhosis. What he found was Hepatitis C. So began another round of treatment,mostly pills and blood tests. He took the Hep C meds for 12 weeks,then our insurance wouldn't cover it any more,even though guidelines for treating Hep C with cirrhosis are to take the meds for 24 weeks(his doctors plan). A blood test last Monday showed he no longer has the Hep C virus. Dr will follow up with blood tests every 3 months,but he is considered cured!!
Meanwhile I have my own set of chronic diseases we live with. The worst of them is Ankylosing Spondylitis from which my C2-C5 vertebrae are fused,leaving me unable to turn my head very far in any direction and with chronic pain. Most of the time I manage pretty well but I do take a lot of medecines.
On Saturday,July 25 I was bringing a handful of rugs up from laundry in the basement,got to the second step from the top,lost my balance and fell backwards down the flight of steps. Shaken up, I tried to stand up and couldn't put weight on my left leg. What was I going to do? There is no phone and no way to contact anybody from the basement. I managed to scoot up the stairs on my bottom,scoot into the living room and somehow get onto the couch where the phone is. I called Ernie (at work) who was almost done for the day. Ernie came home and tried to figure out what to do. He ran across the street to our neighbors Dino and Tracy. Tracy is/was a nurse, so she could help with assessing my injuries from the fall. She thought my ankle  was broken and the best way to move me would be by ambulance. Ernie called 911 and was transferred to our local community fire protection district. They came after going door to door on our street for a while-dispatch had given them the wrong address!! I asked to be taken to St Luke's Hospital (where my doctors are) and they told me they couldn't go there. Either we could call a private ambulance($$!!) or they could help get me into the car and Ernie could drive me. We chose the latter. We arrived at the ER, told the trauma nurse our story and he got really mad. Apparently if a person is in trauma the EMTS are supposed to take them wherever they want to go. The story goes on from there but I'll stop here for now..
To be continued....

Another Year of Gratitude

Once again Thanksgiving is near. While we should always be thankful- the season of Thanksgiving lends itself well to be a time to dwell on gratitude.

Just for fun I did a Google seiarch on gratitude and chronic pain. I found many articles on this subject. This one was most meaningful was:

http://yourpatientsrights.com/featured/how-optimism-and-gratitude-help-with-chronic-pain-and-illness/

Any mention of Gratitude should begin with thanks to God, who gave me life,  cares for me and is my savior.

Next I would thank my Families - my blood family, my family of coworkers, my church family, my church choir family, my Facebook family and my AS friends family.
My list of thanks could go on and on and on. Here are some other things on it: books,magazines and other reading materials, flowers, computers, the color green, diamonds, pearls, oceans
,mountains, hiking trails,  mac & cheese, bananas, peanut butter and arugula, dogs, rabbits, butterflies....

Who else has a Gratitude list ? What is on it ? Please share!!

A life of Gratitude is a happier and more meaningful life.

Until Next Time,

Think, Live and Be Pain-Free

Doctors Orders But Staff Puts Up A Roadblock

Due to my husband Ernies recent cancer diagnosis we have been spending lots of time at doctors offices, labs and other medical places.

As we have more and more dealings with doctors and appointments, we are learning how much of a disconnect there is between doctors and doctors and their staff.
The first time happened after his colonoscopy. The dr told me to make Ernie appointment with a colorectal surgeon right away. I called his office to do this and was told that they couldn't make an appointment because the dr still had his chart!! They would call me tomorrow. Tomorrow came and went. There was no phone call. The next day I called the office and was told that they had left a message. We never got a message from the Doctor's office-so I doubt that one was left. Anyway, I was able to make Ernie's appointment.

The next thing that happened was Ernie's appointment with Dr. Arend's, the colorectal surgeon. At the end of this appointment, Dr. Arends sent Ernie for a chest x-ray and lab work and told hime to make an appointment for Thursday afternoon for a biopsy of his tumor. He said the appointment could be made as late as 4 or 4:30pm. When I called to make the appointment, I was told that the doctor's office hours ended at 3:50pm. So he got a 3:50pm appointment.

This past week we had another mix-up in directions. After seeing Dr. Bhatt as a part of his radiation therapy on Wednesday he got two prescriptions. One was for a powder and one was oxycodone for pain. The prescription for the powder was escribed, no problem. The prescription for the oxycodone we dropped off at Walgreen's on our way home. For convenience sake we went through the drive-up at walgreens. Ernie handed the pharmacist the prescription and she told him it would be ready around 1:30pm. When he went back around 2pm, the prescription hadn't even been filled. Apparently, the girl who took the prescription from him should have asked for his ID, which she didn't. Pharmacy rules say that a prescription for a controlled substance can't be filled without an ID. We realize that some of these measures were put in place because of fraud and abuse, but this is ridiculous. All of the pharmacy staff should have been trained on the proper procedures.

The very worst thing that has happened to us was a mix-up between the doctor and his staff. Last year, (2013) Ernie started suffering from terrible shoulder pain in his left shoulder. After urging him several times to see a doctor, Ernie finally let me make an appointment for him. The appointment was set for September 27,2013. A couple days before the doctors office called to cancel his appointment. When I asked why I was told that since he hadn't since the doctor in six years, the scheduled appointment was not enough time for his appointment. I had an appointment on the same day, at the same office,, with a different doctor. Ernie was so angry at having his appointment cancelled that he would even go to the doctor's office with me (which he usually does).

I'd be curious to know if other people have had experiences like these. Please feel free to share them with me.

Until Next Time,


Think Live and Be Pain-Free,


Joy

How I'm Having a Thoughtful, Meaningful and (somewhat) Pain-free Christmas in 2013

After most of 2013 passing by rather quickly-it is now December. The Holidays are always not quite a happy time for me and my family. We long to be together. But we all live in different parts of the United States. Busy jobs and the threat of bad weather keep us from travelling during the Thanksgiving, Christmas and New Year's holidays.

This year seems to have been especially bad given that between the two of us Ernie and I had no less and really more than nine doctor appointments during the month of December. Most of them were mine. Those appointments and the fact that my work has been busy since my co-worker is out on medical leave probably until February and our part-timer hasn't been at work either for a while due to a fall, leaving me to be the main person doing Data Entry. December is usually a busy time for LHM as we receive many year end donations. And for Ernie, who is a delivery driver for Walter Knoll Florist, the holidays bring lots of extra deliveries and orders.

Usually our main Christmas celebration these days centers around preparing and singing in the Church Choir. This year, late nights and a snowstorm caused us to miss the final rehearsal for our Christmas Cantata. Not what we wanted to do, but work schedules and the weather interfered. On the day of the Cantata, I decided to help Ernie out by shovelling snow-what was I thinking? I'm not used to lifting heavy snow and  it wasn't too long before my already rheumatoid arthritic back started hurting. No way I could even go listen to the Cantata. Disappointment.

Another week or so goes by. Schedules remain busy. It's Thursday, December 19. Ernie gets off work late and his shoulder is really paining him, so we miss our last choir rehearsal before Christmas Eve. We decide (and our Choir Director agreed) that since we haven't practiced the music there is no way we can sing in the Choir for Christmas Eve. This is especially true since our Christmas Eve service will be different this year. It's going to be earlier, 8pm instead of 10:30 or 11pm. This year there will be no 4:30pm children's service. We'll all celebrate together with a Service of Lessons and Carols. This means lots of singing !! of course we will attend the service and sit in the Congregation. Also, I've been chosen to be one of the Readers.

With a lot of appointments and a lot of late nights and not feeling so good at times, it's the 2nd year in a row that I have not sent Christmas Cards. Maybe I'll switch to a Christmas email. It's also the 2nd year that I haven't done Christmas gift shopping. Also, this year we decided not to put up our big tree since we have our dog Swee Dee. She is very curious and Ernie and I can just imagine her pulling ornaments off the tree, running away with the tree skirt, etc. In its place we have brought out a small sports-themed tree and a miniature Spode tree which are usually a part of our decorations. We didn't forget the Nativity scene from the Philippines-although we had to find a new, higher place for it-a length of red ribbon wrapped around the base makes it look more festive.

This Advent Christmas Season I have spent reading devotions, making use of a musical Advent Calendar (an app on my cell phone), thinking of Christmases past and remembering them sweetly and not fretting about what wasn't done this year. It feels good to not be caught up in all the secular hoopla of Christmas. Who needs that?

It's now Christmas Eve. What's done is done. I will spend the day resting up and doing a few last minute things and having my own kind of fun before the Christmas Eve Service.

To all of you have a very Merry Christmas where you can 

Think, Live and Be Pain-Free !!!

Until next time....


Joy