01 April 2012

Health Activist Writer's Month Challenge Post #1

I sat down to write the time capsule prompt and just could not do it. I couldn't come up with anything creative. I just can't. I did not do well in high school with creative writing. I've always been too serious for my own good. I am just not sure if that started before I was diagnosed with JRA or because of the JRA. For those who do not know what JRA is, I will explain. JRA stands for juvenile rheumatoid arthritis. Today, more people use either juvenile idiopathic arthritis (JIA) or juvenile arthritis (JA), but when I was diagnosed (dx'ed) in 1984 it was JRA. That was before the American College of Rheumatology (ACR) had the criteria for diagnosis (dx), which is probably good since all too many doctors seem to feel that one MUST have positive blood work in order to dx any type of autoimmune arthritis (AA). In the past, the criteria for diagnosing rheumatoid arthritis (which some docs used to also dx JRA) were: 1987 criteria for the Classification of Acute Arthritis of Rheumatoid Arthritis
1. Morning stiffness Morning stiffness in and around the joints, lasting at least 1 hour before maximal improvement 2. Arthritis of 3 or more joint areas At least 3 joint areas simultaneously have had soft tissue swelling or fluid (not bony overgrowth alone) observed by a physician. The 14 possible areas are right or left PIP, MCP, wrist, elbow, knee, ankle, and MTP joints 3. Arthritis of hand joints At least 1 area swollen (as defined above) in a wrist, MCP, or PIP joint 4. Symmetric arthritis Simultaneous involvement of the same joint areas (as defined in 2) on both sides of the body (bilateral involvement of PIPs, MCPs, or MTPs is acceptable without absolute symmetry) 5. Rheumatoid nodules Subcutaneous nodules, over bony prominences, or extensor surfaces, or in juxtaarticular regions, observed by a physician 6. Serum rheumatoid factor Demonstration of abnormal amounts of serum rheumatoid factor by any method for which the result has been positive in <5% of normal control subjects 7. Radiographic changes Radiographic changes typical of rheumatoid arthritis on posteroanterior hand and wrist radiographs, which must include erosions or unequivocal bony decalcification localized in or most marked adjacent to the involved joints (osteoarthritis changes alone do not qualify)
* For classification purposes, a patient shall be said to have rheumatoid arthritis if he/she has satisfied at least 4 of these 7 criteria. (emphasis added) criteria 1 through 4 must have been present for at least 6 weeks. Patients with 2 clinical diagnoses are not excluded. Designation as classic, definite, or probable rheumatoid arthritis is not to be made.
Now, if you will notice, in the above paragraph, it states "a patient shall be said to have rheumatoid arthritis if he/she has satisfied at least 4 of these 7 criteria". Many doctors unfortunately have had the attitude that one had to have positive rheumatoid factor plus 3 others of the 7 criteria in order to dx RA/JRA. Thankfully, in 2010, the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) changed the diagnostic criteria.  The 2010 ACR-EULAR classification criteria for rheumatoid arthritis are:
Target population (Who should be tested?): Patients who
  1. have at least 1 joint with definite clinical synovitis (swelling)*
  2. with the synovitis not better explained by another disease

Classification criteria for RA (score-based algorithm: add score of categories A–D; a score of ≥6/10 is needed for classification of a patient as having definite RA)
A. Joint involvement §  Score
1 large joint
2-10 large joints
1-3 small joints (with or without involvement of large joints)#
4-10 small joints (with or without involvement of large joints)
>10 joints (at least 1 small joint)**
B. Serology (at least 1 test result is needed for classification)††
Negative RF and negative ACPA
Low-positive RF or low-positive ACPA
High-positive RF or high-positive ACPA
C. Acute-phase reactants (at least 1 test result is needed for classification)‡‡
Normal CRP and normal ESR
Abnormal CRP or abnormal ESR
D. Duration of symptoms§§
<6 weeks
≥6 weeks
* The criteria are aimed at classification of newly presenting patients. In addition, patients with erosive disease typical of rheumatoid arthritis (RA) with a history compatible with prior fulfillment of the 2010 criteria should be classified as having RA. Patients with longstanding disease, including those whose disease is inactive (with or without treatment) who, based on retrospectively available data, have previously fulfilled the 2010 criteria should be classified as having RA.
† Differential diagnoses vary among patients with different presentations, but may include conditions such as systemic lupus erythematosus, psoriatic arthritis, and gout. If it is unclear about the relevant differential diagnoses to consider, an expert rheumatologist should be consulted.
‡ Although patients with a score of <6/10 are not classifiable as having RA, their status can be reassessed and the criteria might be fulfilled cumulatively over time.
§ Joint involvement refers to any swollen or tender joint on examination, which may be confirmed by imaging evidence of synovitis. Distal interphalangeal joints, first carpometacarpal joints, and first metatarsophalangeal joints are excluded from assessment. Categories of joint distribution are classified according to the location and number of involved joints, with placement into the highest category possible based on the pattern of joint involvement.
¶ "Large joints" refers to shoulders, elbows, hips, knees, and ankles.
# "Small joints" refers to the metacarpophalangeal joints, proximal interphalangeal joints, second through fifth metatarsophalangeal joints, thumb interphalangeal joints, and wrists.
** In this category, at least 1 of the involved joints must be a small joint; the other joints can include any combination of large and additional small joints, as well as other joints not specifically listed elsewhere (e.g., temporomandibular, acromioclavicular, sternoclavicular, etc.).
†† Negative refers to IU values that are less than or equal to the upper limit of normal (ULN) for the laboratory and assay; low-positive refers to IU values that are higher than the ULN but ≤3 times the ULN for the laboratory and assay; high-positive refers to IU values that are >3 times the ULN for the laboratory and assay. Where rheumatoid factor (RF) information is only available as positive or negative, a positive result should be scored as low-positive for RF. ACPA = anti-citrullinated protein antibody.
‡‡ Normal/abnormal is determined by local laboratory standards. CRP = C-reactive protein; ESR = erythrocyte sedimentation rate.
§§ Duration of symptoms refers to patient self-report of the duration of signs or symptoms of synovitis (e.g., pain, swelling, tenderness) of joints that are clinically involved at the time of assessment, regardless of treatment status.  
Not only do I have JRA (which now that I am an adult, many docs just say that I have RA), but I found out that I have had osteoporosis (since 1989-but neither my mother nor I recall being told about that and was NOT on prednisone or any other corticosteroid that would cause osteoporosis until 2001), osteoarthritis, fibromyalgia, scoliosis, facet joint arthritis (causing chronic lower back pain), and Sjogren's syndrome as well as other problems that crop up at times due to medication side effects. In 2008, I had a fall that left me unable to stand or walk. After spending 11 months in the hospital (Jan-Nov. 2009), I was transferred to a nursing home. While in the hospital, I was in a state that from what I've heard, cannot be explained. To others around me, I would speak to them appropriately, answer questions correctly, but they could tell I was not aware that I was doing that. To me, it was as if I had been asleep those months...to me, it's basically a blank area in my memory....which is an odd and slightly unsettling feeling. I began to become alert again in March 2009, but only slightly so...and then as time progressed, I was alert more and more. It was Aug/Sept before I felt more normal. I had many problems in the hospital. I had numerous, back to back UTIs/bladder infections/kidney infections. I was catheterized many times. Due to this, I lost all control of my bladder. I also lost bowel control, especially after dealing with Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C dif. After the bout with C dif. I ended up with vancomycin resistant enterococci (VRE). These infections caused me to be considered a "contact" patient. This meant that ALL people entering my room had to put on a gown and gloves, even the housekeeping staff who would have NO physical contact with me had to do so in order to prevent the spread of these two infections. In fact, just having had VRE, means that any time in the future that I am in-patient at that hospital means I am a contact patient. I also had cellulitis. When I fell, my left leg was twisted under me. It had a large area that got swollen like a blister except that where a blister is thin skinned, this was thick skinned. This led to my whole leg becoming swollen from the bottom of my knee to right above the ankle joint. It was red and warm feeling. It eventually popped open and was almost black inside. That led to having it cleaned out (thankfully I was out of it during that time) and having a wound vacuum put on it to draw the infection out. It took months to heal and even over a year later would still occasionally have a small sore on the scar form. It's a VERY large not to mention deep scar on the outside of my calf on my left leg, 3 inches long, 1 inch wide and almost ¼" deep. In the hospital, many of my joints began to have contractures. My fingers curled into a loose fist, my wrists bent toward the underside of my arms, my elbows bent so that my hands almost rested on my collarbones. Because of this, I was unable to feed myself, clean myself...or do ANYTHING for myself during this time. My hands very slowly loosened up. I also had problems where my ankles contracted in a way that my toes, rather than pointing up when I was laying in bed. pointed toward the bed...in fact, I could almost touch the bed with my toes.  This did not bode well for ever being able to stand again.  I could not keep food down while in the hospital. I know I was close to 200 lbs in Dec 2008 when all of this began. That was very overweight, if not obese, on my 5'3" small boned frame...and it made the joint and muscle pain a lot worse, as well as caused me to have shortness of breath anytime I walked more than  5-10 feet or especially tried to climb the stairs. I ended up somewhere between 90 and 95lbs at my smallest.  Not being on prednisone and not eating are not a diet I'd recommend for anyone, but it did cause me to lose all of the weight I'd gained because of prednisone and a lack of exercise (or even normal movement). Eventually, they had to make some decisions on what to do. I know for a long time, I was given nutrition via a nasogastric tube (NG). I recall one of the nurses told me that I'd pulled my tube out 4 or 5 times in one day. I have no recollection of that at all. Finally it got to the point that the decision was made to put in a jejunostomy feeding tube (J-tube). This tube is placed through the abdomen and into the jejunum (the second part of the small intestine). This was done through general surgery. I was told that if it came out, it could not be replaced so I had to be extremely careful with it. This is something I now find odd as I know someone who has had her j tube replaced after it became dislodged. Just over a month after getting the tube, on my 14th wedding anniversary, the nurse was in my room getting my medications when the aide came to give me a bath.  The nurse told her to go ahead and get everything ready and then since she was not that busy, since she was causing the aide a delay, she would help the aide with my bath. I clearly remember the aide lifting me up to take the gown out from behind me and the laying me back down. The tube was on my left side of my body and so I remember her laying the gown completely on the right side of my body and looking to make sure it was not tangled in the tube. When they were done with my meds and ready to start my bath, the aide just grabbed the gown and started to put it with the dirty linens. She didn't yank on it or jerk it or anything wrong. But, all three of us watched my feeding tube slide out of my body and follow the gown to the linen pile. The aide was very close to freaking out. Thankfully the nurse was in there as I don't think I could have kept the aide calm!  I remember the nurse commenting that there couldn't have been many stitches holding that in if I didn't feel the pain or anything.  I think she said she only saw two stitches on it. They finished my bath, made sure I was ok and then went to deal with the latest in a long line of complications.  In the next few weeks I ate what I could keep down but had some bouts of nausea that led to another NG tube. One day, one of the doctors on rotation came in to let me know that the ethics committee would probably come see me because they were deciding what to do with me. They were unsure whether it made sense to keep using up resources on a patient who was nothing but a terminal patient.  I am unsure whether she said that to make me mad enough to fight and prove her wrong, or if she just was a rude, uncaring, doctor with absolutely NO bedside manner. I don't care why she said it, even if it was in an attempt at reverse psychology to make me mad enough to be determined to prove her wrong, it was completely uncalled for and beyond anything helpful. I remember as soon as she left, I hit my call light to speak to the charge nurse. I was determined that I would never see that doctor again.  They eventually decided to put in a percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically through a small incision in the abdomen into the stomach. It could be replaced fairly easily if it came out. Shortly after having it inserted, I began getting my appetite back. In fact, at times it was almost ravenous. I had my husband bring me a bag of chips one Friday evening after he got off work about 6pm. My son and husband came to visit me the next day around 10am, and my son stepped into my room in front of my husband. I had the bag of chips up to my face, with one corner of it at my mouth as I leaned my head back to tip the bag up in order to get as many of the crumbs out as I could.  I had eaten that whole bag of chips in less than 18hrs. AS they came into the room, my son just shook his head and remarked, "Piggie!" I slowly lowered the bag and gave him that "if I could get out of this bed and catch you, I'd spank you" look that obviously carried NO threat to him at that point. He looked a bit worried for a moment until I could no longer keep a straight face. It was pretty much the first time in months that one of my guys had picked on me! It felt GREAT!  I'd missed it so very much and hadn't even realized I'd missed it.  At some point during those 11 months, the doctors came to speak to me. They informed me that they had no real answers as to why I couldn't walk or let alone hold my weight long enough to stand a few moments. They also felt I'd more than likely never walk again and the other likelihood was that I would never live outside of a hospital or nursing home again. That was a blow. I remember asking the nurses and aides to leave me alone for awhile.  I needed some time to think and pray about that news. I remember praying and telling God that I knew this was all in His hands and that He could still have a use for me even if I was in a wheelchair or nursing home.  I had an amazing feeling of peace.  I didn't know how things would turn out, but I knew I'd be ok in the end. I knew that nothing happens outside of God's will and that even the bad things that happen to us can be used for good by God. So I apparently caused the docs and nurses to wonder about my reaction to the news, or rather lack of a reaction. One other thing they didn't realize is that I was used to hearing bad news from doctors. Living with health problems since I was 7 years old made things like that pretty normal to me. I was used to being told negative health news. I knew well how to deal with it. Sure I had moments of doubt, worry, depression, anger, disbelief, and fear. But they were moments of those feelings...they didn't last. So I was not normal in that sense. I was the odd patient in the eyes of most of the people I dealt with there because of how I handled a blow like that. But it was a combination of faith, being used to health problems, and having such wonderfully supportive family and friends. I started working with a physical therapist named Tom. He was a very nice man. He had me do some basic range of motion exercises, as well as trying to get me sitting up more. I'd been laying down for so long that when I tried to sit straight up, I began to get very dizzy, then sway and eventually fall back onto my pillows. Through going slow and sitting up for only moments at a time at first, Tom was able to get me to the point I could sit up a bit on my own. Eventually, I was able to sit in a reclining chair for longer each day. Then came the day I was able to be in a wheelchair and go out of my room. That was a wonderful feeling. It meant going outside.  There were times the aides would take me outside for a few moments in a reclining chair that was completely reclined if they had time, but by being in a wheelchair, my husband, son and I could go out for longer periods of time. Finally, in Nov. arrangements had been made for me to be transferred to a nursing home.  I went by ambulance on Nov. 23, 2009. I know I went into a bit of a depression then, but it was possibly fear as well as depression.  Who can blame me as I was going from a place where I knew the staff fairly well, was spoiled by a number of "the girls" as I tended to call many of the aides who are a bit younger than I was. I'd known one of the aides prior to being a patient at the hospital. We had worked together at a hotel for awhile and she left after beginning to date one of the shift managers (one of my favorite bosses) so that there would be no problems with favoritism etc. She worked the night shift and so had a bit more time than the aides on day shift to give more undivided attention to patients, they were usually so rushed on days. In fact, on occasion, we played "beauty shop" in which she grabbed a couple of the no water shampoo caps that are heated in the microwave and washed my hair. The first night we did so, she had to use two or three of the caps to get it to where my hair felt clean. Taking care of my hair was one thing that fell through the cracks. My family thought the aides were doing it and my aides thought my family did it. Meanwhile, I went in with hair past my shoulders and when I finally became more alert, one day during a bath, the aide tried to comb my hair but couldn't. So, she pulled her scissors out of her pocket and asked if I minded if she cut out the rather large area of matted hair. It was only on the right side of my head...the left side could be combed through. Before I could even answer, she began snipping away. I fully wanted her to do so, but, would have preferred that I'd been given the choice to actually SAY YES before she started to cut. So the aide on night shift took care of my hair for me after that. She asked what had happened to my hair and knowing me before seeing me as a patient, she could tell I was NOT happy over what happened. So she decided she'd ensure my hair etc was cared for after that. I was comfortable enough to ask her to clean the wax out of my ears. Thankfully, I have a strong stomach....it took a dozen or so of the item she used which was a stick (similar to an orangewood cuticle stick) with a cotton swab on one end. After looking at my ears, she decided that if I was able to lie very still, she would use the pointed end of the stick to pull out what wax would stick to it just by her sticking that end partially into my ear. That was the gross part....the clumps of ear wax she pulled from each ear were HUGE! It was no wonder people were sounding so far away! Then she began to use the cotton swab to get the around the opening to the ear canal. I cannot begin to explain how much better that felt. She was an awesome aide and I've since found that she has become a nurse! After moving to the nursing home, there was a period of adjustment. Once I began to get to know the staff members, I felt a lot more comfortable. Over time, I grew to feel like family in all honesty, both with residents and staff members.  I am thankful I keep in touch with many of the staff members through Facebook, as well as seeing them every few weeks when I return to the nursing home for visits with the ministry group I became involved with as a resident. But I am getting ahead of myself. My first roommate at the nursing home was an 86 year old woman who had dementia. She was so sweet most of the time. But what they say about dementia turning a person into a completely different person is so very true. When she was in a dementia episode, it was like Dr Jekyll and Mr Hyde. There were times though that she was also exceptionally funny during those episodes. I felt bad for her as she didn't have many visitors. So I tried to keep an eye on her as I knew my family would want someone to do for me, if I were older, alone, and didn't have visitors. I got to know how she acted if she needed her brief changed, or if she wanted a drink or food, etc.  I learned her likes and dislikes. And I'd speak up to the staff. I could tell when she was in pain and would ask her if she was hurting. No matter how often they told her to call if she needed something for pain, we all knew she would forget. But, you never know when something will stick with a person, so repetition was common. She would show her concern for me as well. One night, I must have been sleeping rather early. I heard her moving around in bed, but that was normal. Next thing I know she has fallen. So I called for help. The nurse that night was one of the male nurses we had. He was able to literally pick her up and gently lay her back in bed and do his exam to make sure she was not hurt. After he left, I asked why she was trying to get up. She said she hadn't seen my feet moving so she was worried about me and wanted to check on me. Eventually though, her dementia progressed to the point that she was almost violent. It was odd, I never felt scared to be in the room with her. She would yell, scream, hit, kick, bite, pinch etc...to the staff but almost always was pretty good to me. Once, an aide had taken her to the restroom and in transferring her from her wheelchair to the commode the wheelchair got pushed back a bit which caused the door to open some. While I could not see my roommate, I could see the aide leaning against the sink. I could hear their conversation, which was no shock. Sharing a room with another person, and then having a half bath that was shared with the room next door, as well as the nurses and aides coming in and out, it was not expected to have much privacy. I seldom said anything I wouldn't repeat in a roomful of people! I heard my roommate tell my aide, who had asked how she'd gotten a bruise I believe, that I got up in the night and would walk over to her bed and hurt her. That was impossible at that time as I could NOT stand let alone walk yet, plus, it is NOT in my nature to just walk up to the elderly and hurt them! The aide of course knew better as did all of the other staff members that heard about that. My biggest worry was that she would tell her family on one of their occasional visits. But I spoke to her daughter to let her know that had happened. Sadly, in Dec. 2010, my roommate decided to go outside on her own.  The policy of the facility was that any resident who had dementia wear a bracelet that triggered a door alarm if that resident exited the door. Sometimes they just needed to be within feet of the door when someone opened it. In March of 2010, I met a woman named Kim. She walked by my room one day, and as many people did, did a bit of a double take at seeing someone my age in the nursing home.  A moment or so later, she knocked to see if I minded her stopping in to speak with me. I was glad for the company. At that time, I was not yet able to get out of bed often so at times during the day, I'd be tired of reading, tired of TV and just tired of everything.  I wasn't yet able to write very well at the time (when my hands were contracted, just as I had to learn to feed myself after they loosened up, I also had to learn to write again) so I couldn't write for long periods of time.  I welcomed any guests to be honest. Kim explained that she was part of a ministry group that visited the nursing home every other Friday. We talked about my faith, and what had happened to bring me to the nursing home. I remember being glad that Kim even stopped because in all honesty many people who saw me in the nursing home assumed that I was in the nursing home due to a mental problem. I can understand as there are not many people my age that are in nursing homes because of a physical problem; many are there because of a mental problem. Before leaving, Kim asked me if she could give me a Bible. Now, I am sure she began to wonder about my mental status after my response to her question was laughter. But I had a good reason for that laughter!  I had just told my Mom less than a week earlier that I needed to have my husband find my Bible. While I was in the hospital, he had the job of packing all of our belongings and moving. He decided to move as we lived in a townhouse and we knew there was no way I could handle the stairs there. But, I was finally able to hold a book...another thing I had lost the ability to do, as well as turning pages. So, finally being able to hold a book and turn pages was wanting my Bible. But I also knew that my husband probably would have NO idea where he'd packed it (or anything else really), so I was so glad she was offering to solve my problem! I explained my laughter and gladly accepted the Bible from her.  She visited off and on until the end of May, occasionally bringing gifts. Once I had fallen asleep while reading my daily devotions and woke up to my Bible, which I had been holding, laying on top of an adorable purple teddy bear. Under the bear was a Christian mystery novel. Since I had no clue who left the presents, I decided the bear needed to be named Mystery because it was lying on top of a mystery novel and because it was a bit of a mystery where he came from. I found out the next time Kim stopped in. I did have to be careful with any stuffed animals that were given to me, as one of our residents who did not understand that she couldn't take things from people, loved stuffed animals. She couldn't speak very clearly and one day I thought she was asking to see the talking monkey my Aunt Kathy had sent me. So I let her see him. And she backed out of the room to leave with my monkey. Not being able to get out pf bed, I couldn't follow her to get it back. Thankfully, an aide entered the room a moment later and I was able to ask her to rescue my monkey. Because the ladies in the ministry group had school age children, they took summers off. Kim especially, as a minister's wife was very busy during the summer. On her last visit, Kim asked if I would consider something over the summer.  She asked me to think and pray about me working with the ministry group. I'd go around and visit the other residents with them, and prepare a short devotion to read during the visit.  At first, I was very resistant to the idea. I was not the right person for that job. I couldn't even get out of bed for very long, so how could I say yes to helping her when I didn't even know what would happen over the next few months. Plus, I never know with my health if one or more of my diseases would be flaring a cause a problem with my being able to keep my commitments. But I also said it was not a permanent no and that I'd appreciate it if she would ask me again when they returned to see if the situation had changed. Over the summer, I began to feel much better, I began to be up more often and for longer periods. So I knew that when Sept rolled around and I saw Kim again, what my answer would be if she asked me again.  In fact, when I saw her, I asked her to ask me again.  In Sept. she visited again, and asked me if I had considered what we'd discussed. I began working with His Hands Ministries in Oct. 2010.  I would find or write a short devotion that I'd read to each resident that we'd visit, then we'd talk about how the resident was doing and if they had anything they were needing prayer for, then we'd close in prayer.  We usually visit 6-8 people in a 2 hr time period. Then in Feb 2010, Kim had the idea to begin a Bible study for the residents. She decided to use Bible studies from Dr Charles Stanley's site, In Touch Ministries. If something came up that she needed to be away when a Bible study was scheduled, I'd lead.  As summer approached, I decided to lead a summer Bible study.  I used John MacArthur's book on John, a verse-by-verse study.  It went ok. Not as much discussion as our small group does. In Nov 2010, I was elected president of the nursing home's resident council. That gave me a chance to make a bit of a difference for residents in that if there was a complaint that someone wanted to raise but wanted it kept confidential as to who complained, they could come to me and I was able to bring up the issue to the resident council or if it needed addressed before the next council meeting, I could go to the appropriate person to hopefully fix the problem. I happened to overhear some nurses and aides discussing how the kitchen staff was making it hard for the nurses to get the thickening powder they needed to use for residents who could not have liquids for whatever reason. One nurse said she barely had enough to do all of her meds passes for those residents. After hearing that, I asked a nurse from a different station if she had heard of any problems and she told me that two stations she had worked were having trouble. That made 3 out of 4 stations...I saw no reason to track down anyone from the last station. So later that day, I went to social services and explained how I had heard the conversation and because it affected residents, I made it my business to ask around.  Needless to say, they seem to have made it easier for the nurses to get the thickening powder. In Jan 2011, I began PT. I was working with Jim. In Dec 2010, Mini BC had, in an effort to play a joke on his Dad, found a way to teach me how to get in and out of bed without assistance. I spoke to Donna M. in the therapy dept, because I was so excited about how Mini taught me. My aide had come into my room while Garrin was outside cleaning out the car seat for me. She put me in my wheelchair because she knew we were getting ready to go out. She left the room before Garrin came back, so Mini decided to tell Garrin that we got me into my wheelchair. I said that would be ok as long as he eventually came clean. The aides work too hard not to get credit for what they do for the residents. So when Garrin came back in and saw me in my wheelchair, he asked how I got there...and I looked to Mini. He piped up, "Mommy and I got her into her chair."  My husband, not being a stupid man, asked one small but powerful question: "HOW did you do it?". Needless to say, Mini changed the subject VERY fast. All of a sudden, about 10 minutes later, he had an idea. He asked me to hold my legs up and out in front of me. Then he had me wheel up to my bed and put my legs on the bed, perpendicular to the length of the bed. Then he told me to scoot onto the bed.  I looked to my husband and we basically had a short, word free conversation of me saying something such as "Am I crazy for doing this or crazy if I don't try it?". In the end, I decided I'd trust my son and tried it and it worked!  I was able to get myself in and out of bed. Donna suggested I not do it unless someone was in the room with me. And she got a set of anti-tippers to keep my chair from tipping backward and a transfer board so that I could slide across it and not worry about the inch or two of space between my chair and the bed. When Jim did his evaluation for me, he did it on my birthday.  I don't know if he knew that it was my birthday or not.  But he had me show him how I got in and out of bed on my own. And that's when he gave me a wonderful gift!  The gift of independence.  He said that because I was cautious, I set my brakes then checked to make sure I'd set them, I made sure my board was stable. I was so thrilled about that! He didn't get it made official for a day or two but it was still great knowing it was coming!  When I went to PT for the first time, we did some stretching, a bit of work with the weights on the pulley and just chatted about goals. We decided we would work 3 days a week, which was great for me as it was not too much for me. Jim had worked with all ages which was good to know because even though many of our issues are similar, given that we have shared joint problems, there are differences in I can tolerate versus what the elderly can tolerate. Sadly, quite often, elderly people can do circles around me....and I DON'T mean in a power wheelchair! My Mom has polymyositis, RA, Reynaud's and Sjogren's syndrome and is 78 and many days has a lot more energy than I do and definitely gets around better than I do.  As time passed, working with Jim was NOT like other PT I've had in the past. He knew when to push and when to back off. He could read me a bit better than I could myself. There were only a few times that I asked to stop during PT. Eventually, he had me work in the parallel bars. And on Mar. 29, 2011, two years, three months and nine days after my original fall, I stood for the first time.  It was only for a few moments, but that's fine!  I then rested a bit and stood again for about 5 min.  It was 83 days after I began PT, and only took approximately 34 days of PT. I only worked about an hour a day, so it took 34 hours of PT to be able to stand.  Much better than the earlier predictions of the doctors, who doubted I'd ever walk again and I was getting there. Then Tom had predicted that it would take 2-3 YEARS of daily intense PT for me to be able to stand. I'd much rather the 34 days of not so intense PT. This is Jim and I the first time I stood.

On April 18, 2011, Mini BC was on spring break and asked if he could spend the day with me. I was happy for him to do so. He especially wanted to watch my PT. He arrived right before the morning activity was over. That Monday, Pastor Scott was there for the monthly Communion service. Communion had just finished and he was getting ready to close the service. I'd stepped into the hall to speak to Gilbert who, had dropped Mini off. We went back in and the last song Scott sang was "Victory in Jesus".  It struck me as interesting that Mini knew it because I knew he didn't get to go to church on Sun often because my guys are night people (as am I but I was able to go to services at the nursing home because I was always awakened early for meds) and then they came to visit me on Sundays. We left the service after I introduced him to the church volunteers. We had lunch and then it was time for PT. We went in and I did my pulleys as usual and then waited on Jim to be free. We had a very loose arrangement on the time I went to PT. If there was an activity I wanted to go to, or he had another resident who needed to change their PT time or a meeting for the PT staff we both were willing to change the time we met. As I was doing my pulley exercises, Mini told me, "I bet you can't do 5lbs on there."  At the time, I was doing anywhere from 2.5-4lbs depending on how my joints and muscles felt. Jim didn't want me to stress my body too much because it would then go into a flare and I'd have to back off, it was NEVER a setback because to Jim a setback was a major instance of something causing me to lose PT time. A day or two of backing off was not a setback. He said a setback is if I went to the hospital and lost a lot of ground or something big like that. Well, I was not about to let my child dare me to do something I thought I could do! So I stopped, got enough weight to add to the pulley to make it equal 5lbs and did 2 sets of 40 reps on both arms! He just had this grin on his face that said he said he didn't think I could do it, just to get me to try because he knew I could do it. Or maybe I am reading more into it....I don't know for sure. He's a smart kid and has been one of my biggest cheerleaders and supporters as well as helpers. Jim finished up what he had been doing and came over. I introduced him to Mini. He had brought my towels with him. That is something I should explain. Because of my ankle contractures, I couldn't stand without something to accommodate the fact that I can put either my toes or my heels on the floor but not both. Well, unless I turned my foot so that all of my weight was resting on the outside edge of my foot, which is not a good thing...it's not stable, and is quite painful. I was waiting on my appointment with the orthotist to get orthotics made. When it came time for me to begin standing, Jim had to think outside of the box or it would have meant delaying standing until my appt. in May. He came up with a great idea. The other therapists were all wanting to check out what he did and everyone was thrilled to see how his idea worked.  He took towels and folded each one into a wedge shape. Then he taped them up so that they stayed in that shape. Each day when it was time for me to begin standing, we slid the wedges under my feet. It worked VERY well. The day my son was with me, Jim asked, "Are you ready to walk?" I was a bit surprised but decided if he thought I was ready, I was ready!  So I said "Sure, but how are we going to do this because I don't have the orthotics?" I'd noticed he had the towel wedges in hand but couldn't think how we'd make it work. It was simple! He taped the wedges to my shoes! After doing this, we went to the parallel bars where I had been working on standing. He had me stand, asked Mini to push my wheelchair behind me close enough that if I needed to sit down I could do so without problem but not so close that it bumped me. He had me use a platform walker where there are raised armrests attached to a walker. It gave me more support than a regular walker. And then I took my first steps in 2 years, 3 months, and 29 days. Yes, I know how long it was that I wasn't able to walk. It took 104 days from beginning PT to the date that I walked, with 43 days/hours of PT. It was neither daily nor intense. But we did it! That was just the start.  When people noticed I was walking, they were ALL thrilled...staff and residents alike! I know a few staff members were either clapping or cheering me on, my son was encouraging me and helping by pushing my wheelchair. I only walked about 10-15 feet but after not having walked in over 2 years, that was enough of a start. I was so excited. As I progressed to walking more and more and we were out in the hallways instead of in the therapy room only, I was cheered on and encouraged by everyone we passed almost.  I've never had a therapist that encouraged me as much as Jim did...and to be fair, the other therapists did as well. The next day, I led a devotional time on the Alzheimer's/dementia unit at the nursing home. We had decided I'd do part of the devotion, we'd break for a song and then I'd finish up. The activity leader, Debbie, led the song.  She picked "Victory in Jesus".  Normally, I would have sang along and thought nothing of it.  Well that day, singing the second verse, I almost ended up in tears, given what had happened the previous day. That verse goes:
I heard about His healing, Of His cleansing pow'r revealing How He made the lame to walk again And caused the blind to see And then I cried "Dear Jesus, Come and heal my broken spirit" And somehow Jesus came and brought To me the victory
It hit me, I had experienced a healing. In fact, in me the line "He made the lame to walk again" was very true. I was stunned.  But I pulled it together and finished the devotional time. It seemed that a number of residents liked "Victory in Jesus" and I don't think a Sunday passed that it wasn't one of the songs we sang in church. The hymnal at the nursing home has Bible verses that go with each song in a way. For this song, the verse was 1 Cor. 15:57 "But thanks be to God, who gives us the victory through our Lord Jesus Christ." (NKJV). I had a major victory thanks to God.  I fully believe that is what happened.  God wasn't planning on me being in a nursing home the rest of my life! I ended up progressing fairly well, going from a platform walker to a regular walker to forearm crutches. I got my orthotics in June and adjusted to them fairly quickly. I was   able to begin taking on more of my own self-care and some days took complete care of myself. On Nov 20, 2011, I was able to return home.  I have had my ups and downs since being home, which is totally normal given the cyclic nature of my health problems.  Most day I need minimal help, but when I am in a flare up, I need a bit more help. My family is awesome about helping me out, and if I cannot do something, they don't make me feel bad about it.  I end up feeling bad, but not because of anything they do or say. It's just that I tend to be harder on myself than other people are.  

This was originally to have been posted on 04/01/12 but it took me much longer to write than I figured it would! 

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