Monday, December 13, 2010


I know it's been awhile since I have posted here. To say I have been busy is a cop-out I know, but it's true. Tonight I am just going to highlight a few things here and spare everyone the details. Most of you know what has been going on in my life anyway, so why rehash it all here?

The biggest update is that my second knee replacement has been scheduled for Monday, January 17, 2011. That is five weeks away. I am excited, but still a little nervous. Not nearly as nervous as the last time. At least this time I know what to expect and am much better prepared. I'm looking forward to getting it done and doing the physical therapy and occupational therapy. Yes I know I am a bit strange seeing as how I like doing those painful exercises. But it makes me better and it's worth it. Knowing what I know now, I want to have my therapists work me even harder than they did the last time. I am expecting to walk out of that nursing home without even the assistance of my cane this time!

Back in April 2007 when I lost my job due to my disabilities, I was afraid and didn't know what was ahead for me. I'd come out of a homeless situation, living at a woman's shelter for 9 months, then finally able to start over in a home of my own, only to lose my job due to health issues. What I did know was that I would not be able to go back to that shelter if I lost my home yet again. It would be physically impossible, let alone emotionally unbearable. But back then I could walk freely, still. My disabilities resulted from my chronic atrial fibrillation which left me feeling chronically exhausted, and out of breath, with angina occurring whenever I did so much as tap my toes to the beat of my favorite music. Walking very far put additional strain on me to the point that I ended up not walking much at all. By 2008 after I moved to the apartment I am in now, I ended up with a stress fracture in my right foot. Three months later I had a severely sprained ankle and heel on the left foot. By the time I healed from those injuries, I was permanently walking with crutches. In April 2007 I was walking without help. So when I got my right knee replaced in May this year and by October was walking without the help of even my cane, I was elated. I still have the arthritis. I still have the chronic atrial fibrillation. As long as I don't overdo it, I get by without the angina being a problem so much. Sometimes, however, I do still have issues with angina. I still have all the other issues that brought about my being disabled. But I can walk again without the crutches or cane. Having my left knee replaced in January is exciting for me. All the time using the crutches caused me to not have very good balance when walking. Now my balance is back again, somewhat. You still won't find me standing on a step stool, chair or anything else but the ground. You won't find me on a ladder. Getting down the steps to do my laundry is still a struggle. But being back to where I was before the crutches in 2008 makes me feel like there is a light at the end of the tunnel after all. Even though I still can't walk very far without resting, or stand for very long at one time for things as simple as cooking or washing dishes or other stand up household chores, or climb up and down multiple steps easily, I can get around again. Even though I do all my kitchen work using a computer chair, lately I find myself standing up more and more to do little tasks that I haven't been able to do comfortably for the past 2 years.
Becoming disabled was devastating to me. But a lot of things have been devastating to me over the years. I'm strong with God's help. Finding myself getting weaker and losing more and more strength and abilities over time was increasingly frustrating. So having these good results from the first knee replacement makes me more than ready for the second one. Believing that I can regain some of the lost strength and endurance thrills me. I don't know if I will ever be back to what I would like to be physically. But every little bit of progress is wonderful.
Something that I am looking forward to in the spring, hopefully, is maybe to be able to get another car. God literally gave me the car I had last. When I could no longer take care of it or use it, He allowed me to give it to someone else who needed it. I am not sure God will repeat this for me. Who knows what He has in store for me? I've learned to trust Him and wait for His provision and guidance. He has never let me down yet. With everything I have been through in my life, I know one thing for sure. God has been with me every single step of the way, even when I couldn't walk on my own without the help of crutches. When I lost everything I owned and had to start over...when I became homeless twice...when other issues in life tried to get me down, God was always there to hold me up and keep me going ever forward toward whatever His goal for my life may be. Without Him, I know I would not be here now. So, if God has a car for me...or maybe even something much better than a car, I am ready to move continually forward. If you read my blogs enough you know my theme is baby steps. (Do you know I took that from the movie, What About Bob?) Losing weight--baby steps. Walking again--baby steps. Getting healthier day by day--baby steps. In my mind, whatever is not moving backwards is progress. I've been in the past. I'm not about to go back there again. God has something better for me out there and I am moving forward with Him.

Monday, August 23, 2010


As the heading says, I am feeling a bit frustrated today. More than just a bit, really.

A couple years ago when my son-in-law was killed, my daughter's pastor at the time responded to her question about how to get back to normal with something on the order of finding a "new normal". Last week as I was reading another blog by someone with invisible illnesses, the same basic term was mentioned. I don't think I have applied this term to my own life.

I can remember most of my early years praying to God asking for "a normal life". As I got into adulthood, I gradually started to realize that there really is no such thing as a normal life. Everyone has their own "normal".

But when things in your own "normal life" change permanently and drastically, finding a way back to some sort of stability can be difficult. Not allowing yourself to do so can be paralyzing. I think I am somewhere in between. And I am frustrated. Since I haven't really ever thought of applying the idea of a "new normal" to my life until today, I've let myself be stuck in trying to get back to my life as it was before my disabilities changed things.

My life has never been easy or what I ever considered "normal". It took me a long time just to realize and accept that I wasn't going to have that kind of "normal" life. My life was what it was and I would never be able to change the past. No matter what, I can only either stagnate in the present near-paralyzed life or I can try to find that "new normal" and go from there.

So this is where I get frustrated. I want a future. I want a good future. I am only 55 and too young to be thinking of spending the rest of my life stagnating when there are so many things I believe I could be doing. Just because I have some disabilities doesn't mean I am worthless. Yet I feel worthless. At the same time I know there are things I could be doing. But to do those things, I need help. And this is where another big part of my frustration comes into play. I don't have that help. I have the help that I need for the basics of my life. But not for the extras. And I cannot force people to help me.

The thing is, many of the things I would like to bring into my "new normal" would be fun things to do with at least one other person, or a group of people. I just can't seem to find anyone interested in being part of my life. And I can't find anyone who is interested in allowing me to be part of their lives. This does not include my children and grandchildren, although they could go a step or two further than they already do, if they wanted to. I don't know how to take the steps necessary to get to where I know I could be. I've tried everything I do know how to do but with very little in the way of results.

The biggest step forward came yesterday when I finally found someone who helped me go back to church. Going back to church wasn't easy on me physically or emotionally. I'm supposed to try to go again next Sunday. The way I am feeling right now, I am not sure I will want to. At least not yet.

I feel stuck. Stuck in this place between being able to do things I know I could do, and being able to do them. I know that makes no sense. But if you think about it, it does make sense. I know that I can do these things I want to do. It is just the getting to that holds me back. There are still the physical limitations, while improving somewhat, still aren't where I would like them to be. It's hard when I am sitting here comfortable in my home thinking I can do something, then dealing with what it takes to actually leave my home to do those things. There are things I would love to be doing right here in my home but doing them seems just out of reach.

So, is this my "new normal"? Is this what I need to accept before I can move on?

It seems like my entire life is just comprised of one grieving process following another. I am tired of grieving losses. And I am tired of the brief gains only to be followed by more losses. It takes away hope. And I am barely struggling by with the little hope I have left. Something has to change. I don't know what that change is or how to make it happen. But I keep trying.

Thursday, August 19, 2010

Mixed Feelings

I'm going back to church Sunday. I am excited to be going back. I've missed my church and my church family. To me they were family. To them...I am not sure what I was, or am.

When I got sick 4 years ago and gradually dropped out of my church activities until I wasn't able to go to church at all, I was scared. I felt alone. And I felt abandoned. Even though I had been on the church prayer list for weeks and weeks, when I started missing activities, people didn't question me. When I stopped going to church altogether, the grapevine reported back to me that my church family thought I was just going to another church somewhere. The one or two who kept in contact once in awhile to see how I was doing just didn't cut it. It was odd. Friends I had who didn't go to my church would run into friends from my church while out and about in town, shopping or running their errands. And I would hear back that they spoke about me. That's how I found out that my church thought I left because I found another church. I've never quite understood this. One report back to me was that I was "isolating" myself. However wrong that report was, it was much closer to the truth than that I had left my church for another one. All these reports hurt. But what really hurt was that I had apparently been forgotten by those I cared about, by those I called my friends. I would hear once in awhile from those one or two who kept contact, that I was being prayed for occasionally in my singles group. But in those 4 years since I got sick, and in the more than 3 years since I stopped going altogether, no one else from my church family has bothered to call or stop over to see how I am doing. Not one person bothered to find out the reason why I stopped coming, or to check about why my name wasn't on the prayer list anymore. I find out if I got better and didn't need prayer...or if I died and didn't need prayer...or if I just moved on like so many seemed to think.

I could have died. I was sick enough in the beginning. Every night when I went to bed I felt like I might not wake up the next morning because I felt so sick, so exhausted from just getting through the day. My illness is invisible to most. Unless I tell you I am sick and what is wrong with me, you would not know it. I am overweight which is part of the reason you would not notice the illness. Some of my symptoms could be explained away as being because of my weight. But those symptoms are not because of my weight. They are brought on because of my illness.

I've had bouts of Atrial Fibrillation off and on since back in the early 1990's. It was finally diagnosed as Paroxysmal A-fib in May of 1994. Paroxysmal because I only had occasional my case back then...about twice a year with each episode lasting about 24 hours or so. Gradually over the years, the episodes came more often and lasted longer, until in June of 2006, they came and never left other than for a few days here and there. Since June of 2006 I have been in Chronic A-fib. I worked and kept my job for as long as I could, but the symptoms I had connected with my A-fib were worsening as the episode lasted longer and longer. Eventually, due to missing work for those times when I felt the worst, I lost my job and ended up on Social Security Disability. I continued going to church the best I could back then. But by then, when I went to church it was only on Sunday mornings because I didn't have the energy to go to work every day and still participate in the evening services and small groups I was part of. By the time I lost my job, I didn't even have the energy to make it to the Sunday morning services with any regularity. And in all the months that this took for me to slowly stop participating in my regular church activities, no one questioned why.

First to go was Choir. I didn't have the breath to sing anymore, let alone do the walking required to get from the room where we practiced to go back to the sanctuary for the Sunday evening service. Walking from the car into the church was almost more than I could deal with. Once inside the church, walking from one area for one activity to another for the service was just too much for me. Then there would be the walk back to the car. Most Sundays after morning service, Sunday nights after evening service, and Wednesday evenings after small groups, my closest friends and I would go out to some restaurant in town for food and fellowship. I completely stopped going out with my friends because I couldn't summon up enough energy to do it and still be able to keep up with my job. I was exhausted and pushing myself as hard as I could just to keep the job. Something had to give. After Choir, I stopped my small group involvements. Then I stopped going to Sunday Evening services and Sunday School. I could barely manage to just go to one service on Sunday mornings. When I did go, I didn't have the strength to stand around and chit chat with the others like I used to do. I especially could not walk and talk at the same time. I didn't have enough breath to do that. I am sure I seemed rude at times. But once I stood up to leave, I had to keep going just to make it to the car so I could stop and breathe for awhile before I could even think about turning on the engine and driving home. All this time I was still on the weekly prayer list because of the A-fib and what was happening with my health. Finally, once I had lost my job, and I was still feeling so sick, it was just easier to stay in bed on Sunday mornings instead of get up and struggle to get to church and back home again. Just that much effort wore me out.

Eventually, because of the loss of activity and exercise, the arthritis I have in my knees got worse and it became harder for me to walk. The strain of walking, along with the pain involved with walking put more strain on my heart which, in turn, caused me to back down even more from activities in my life. Eventually, almost 2 years ago, I gave away my car. I wasn't driving it because it just took too much out of me to have to go anywhere. The few times I did go anywhere, my daughter would take me. Places like to Walmart, and out to eat, and to any doctor appointments I had to go to. To this day, it is the same. I am homebound. I go very few places. The weather has to be right. My legs have to be feeling good (which now since the knee replacement, they feel a lot better). And I have to be feeling good with the heart issues. This means, I can have plans to go somewhere, and back out at the last minute. So I don't make plans.

Sunday, I have plans to go to church. Through Facebook, I have kept in touch with a few people from my church family and last night I posted that I wanted to go to church. One of the ladies figured out how to get me there so I am going. And I am planning on sticking with this plan to go. It will be morning so it shouldn't be too hot for me to go. I've been feeling better since the surgery and since getting a new medication added to my drawer of meds I take every day. I am hoping this works.

Still, my feelings are mixed. The Lord teaches us to forgive. I believe I have forgiven my church family. But the hurt feelings are still there. Our humanity separates us from God in that, though He is able to forgive AND forget, forgetting is difficult for us. And every day for the last 3-4 years since I completely stopped going to church and have been sitting at home feeling lonely, I have felt hurt and abandoned by the ones I cared about the most and needed the most. My brothers and sisters in Christ. The last few times I managed to go to church, I felt like an outcast for the most part. Even though there were a couple people who said hello to me and spent some time talking to me, most of my friends ignored me. I was too sick to stop and talk once I was up on my feet heading for the door after the service. But I was there early enough, sitting in the pew. And I stayed in the pew awhile after most people were leaving so I could get a straight shot out of the door and not be stuck trying to breathe and unable to walk or sit anywhere and wait. So there was plenty of time for friends to get to me to talk if they wanted to.

People who are not sick do not understand those who are sick. Especially if the ones who are sick, don't look any different than they did before they got sick. The only thing that would look different about me is that I have gained more weight since getting sick due to lack of activity. (And now there is a scar on my knee which will not be visible at church.)

I want to start a new ministry at my church, if I am able to keep going. Someone has to reach out to the other people like me...the ones with invisible chronic illnesses...the ones who leave the church and no one follows up with them to find out why...the ones who might just need a friend to reach out to them to let them know they haven't been forgotten. I really needed that kind of ministry in my life. Hopefully I can do something about it to help someone else like me.

Monday, July 19, 2010

Total Knee Replacement

On Monday, May 24, 2010, I joined the ranks of those who have had some kind of total joint replacement. For me, it was my right knee.

For over a year prior to having my right knee replaced, I had been walking on crutches for short distances and using either my wheel chair or a publicly provided motorized cart whenever I went anywhere where walking would be more than a few feet. I've found out from participating in physical therapy at the nursing facility I stayed in for three weeks after the surgery, that my walking distance tolerance is about 150 feet. That is on a good day, which, while at the nursing facility most days were good days. That is also inside, in controlled atmosphere such as temperature, humidity, the surface I am walking on. And, that was with a cane. For me, that is success.

I began this road to disability a long time ago with various physical issues. First of all, I was born with what my mother termed "crooked legs". I was severely knock-kneed. By the time I was able to walk, the podiatrist had my feet taped up to build up my arches and walking in one of two types of shoes: Buster Browns (which I liked) or saddle shoes (which I hated). I can remember having to go get my feet taped once a week or so and that I hated it. The night before each visit to the doctor ended with me sitting on the kitchen counter with my feet soaking in the sinkful of water as my mother pulled off the horrible tape. In my mind, it reminds me of what duct tape looks and feels like today. Back in 1957 and 1958, I have no idea what kind of tape it was. What I do know is that it hurt really bad having that tape pulled off my little feet every week knowing that the next morning I was going to have new tape put on. I remember this going on at least until after I was three years old. Maybe longer. The Buster Browns and the saddle shoes, though, lasted into the first few years of grade school.

I was clumsy. I could walk and skip and run and jump just like the other kids, but not as well. And I fell down a lot. I twisted my ankles all the time. When I was old enough to question my mother about the taped feet, and about my legs (which she would always remind me about if I wanted to do something that might mean doing some kind of damage) I asked her why the doctor taped my feet. All she would say was that he had wanted to put me in braces but she couldn't afford the braces. So the next best thing the doctor could do was try to build up my arches. However, that meant that I could only wear good solid shoes with good arch supports. Good solid shoes like that didn't mix with childhood and childhood games. My mother, wanting to protect me, I suppose, would tell me that it was better if I didn't do certain kinds of activities because "when you get older, you are going to have problems with your legs". By the time I was a teenager thinking about career choices, it seemed that all the careers I was interested in involved being on my feet all day. These were all careers my mother discouraged. After all, when I got older, I was going to have trouble with my legs.

I didn't pay a lot of attention to the warnings my mother issued about my activities. I wasn't allowed to go barefoot, according to the doctor. Once the weather warmed up every spring, and right on through til it got too cold to go barefoot, it was hard to get me to wear shoes of any kind. I wasn't supposed to wear penny loafers, or tennis shoes (not the supportive shoes we know today). I was supposed to wear good supportive shoes with wide toes and high arches. They had to have shoe strings too. Absolutely no slip ons. But I guess by a certain age, I made such a fuss at the shoe store that my mom would give in and buy me the penny loafers and sneakers. I remember I liked Keds...I think because of the little red dot on the heels. I played almost every kind of game the other kids would let me play. I wasn't very good at any of them...the physical games anyway. But I kept trying. As long as they let me, that is. They wanted their teams to win. I wasn't the type to be good at helping them do that.

I loved ice skating. In the winter my cousins all went ice skating in the old canal that flowed just across the highway from their house. I spent a lot of time with them year round playing all kinds of childrens games, fishing, and sledding down the banks of the canal onto the ice. I skated too, as best as I could. I never had my own pair of ice skates. I always had to borrow a pair my older cousins had outgrown, then put on extra pairs of socks until I could get a tight fit with the skates. But it didn't help with my weak ankles, and I barely moved from place to place on ice skates. I wouldn't quit but by the time we would go inside, my feet and legs would be so sore from just the effort of trying to stand up straight and skate like the other kids did. I never would tell anyone how much it hurt. A few years later during the summer, my best friend and next door neighbor and I were having fun balancing on a small tree that had been cut down and was lying in our yard. It had been there for a couple days and we were getting pretty good with our "act". We pretended we were in the circus walking the tight rope. Then the next day the trunk of the tree had been put up on a saw horse for my friend's brother to cut the tree into manageable pieces. He walked away for something or other and we took the challenge. We climbed up on that tree and started in on our act, only this time the tree was in a different position and up off the ground. I lost my balance and started to fall. I looked down at where I was about to land and saw a pretty serious looking broken tree branch pointed right up at me. I knew if I fell on that branch it would dig into me pretty bad. So in the midst of that fall I changed my position and missed the branch but ending up twisting my ankle so badly that I couldn't walk on it. Back then, the doctor didn't bother taking an X-ray. He just squeezed it here and there and decided nothing was broken, wrapped it up in an ace wrap, and told me to keep off it for a few weeks. At that point, my already weak ankles became even weaker. The following winter when I tried to ice skate, I could hardly keep standing up. My feet hurt so bad, along with my ankles from being turned out instead of straight up. When I took the skates off, I found a big blood blister about the size of a quarter or half dollar on the ball of my foot. I never put on a pair of ice skates again after that.

In fifth grade the band director would come around to try to interest students in joining the band. My mother was thrilled! She convinced me of all the wonderful fun things I would get to do for free or for lowered prices that I would never get to do if I didn't join the band. So I got my flutophone and I joined the band. I went from flutophone that year to trumpet in sixth grade. I played trumpet for everything including marching band when we got to the summer after eighth grade when we were officially members of the high school marching band. I loved it! We marched in parades, at festivals, played for horse races at the county fairs, and got to go to Cedar Point every summer except once when we went to Kings Island instead. We competed in the Ohio State Fair Marching Band Contest. And I got to wear white Ked's sneakers! It was part of the uniform. Even in the fall during football season when we wore our full uniforms we still wore those white sneakers. Once football and marching seasons were over we switched gears and went into concert band mode. In ninth grade the director asked if anyone wanted to play a different instrument because he needed someone to play French horn. I volunteered. My mom wasn't thrilled with that because she loved having me play trumpet and dreamed of me playing all kinds of solos. Well, that just wasn't going to happen anyway. I switched to French horn and absolutely loved it. It was a good decision for me. One of the few good decisions I've made in my life. Well, I still got to play trumpet for all the marching season and French horn for the winter season. She was okay with that. In my senior year, I had warts on my foot. Sudden trip to the podiatrist. I hadn't seen him in years. I think because I used to put up such a fuss about going that my mom just stopped taking me. Anyway, he examined my feet and legs while he treated the warts. He told me that my feet and legs looked better than they ever had and that whatever I was doing was working. I looked him in the face and told him that I was marching in band, wearing sneakers, and that I wore penny loafers and went barefoot all the time. He said to keep it up because it was obviously working. I think, looking back on that now, that day had a healing effect for me. I was doing well at something finally. Band. And I had been able to hear the doctor tell me my legs were doing well in spite of all his advice I never paid attention to. I was happy. My mom was happy. At least at that point. And at that point, when I was seventeen years old, I had a baseline to go by about how my legs were doing.

Ending high school meant heading to college and choosing a career. I couldn't choose anything that made my mom happy with me. I chose cosmetology because I loved styling hair. She said absolutely not because I would be on my feet all day long and when I got older my legs would give me trouble. In my heart I wanted to be a dancer but I already knew with my clumsiness that I wouldn't measure up to professional standards. I really wanted to pursue music but for my mother that wasn't a good choice either...because there wouldn't be money in it. If you are young and reading this you have to remember that choices were severely limited for women back in the seventies. Finally, after trying special education as a major and ultimately dropping out of college for awhile, I ended up looking for work. The only work I ever seemed to be able to get was work in nursing homes, either as housekeeper or nursing assistant. After a couple years of working that way, I decided I wanted to become a nurse. Surprise of surprises, my mother was absolutely thrilled!!! But nurses spend their time on their feet. She didn't care! I wanted to be a nurse and she was happy about it. So off I went to nursing school. I chose to try for a Bachelor's degree in nursing so I could go on and get my PhD and go into research. I never made it that far. But the point of this part of the story is about how active I was during my college years. I lived off campus in an apartment complex next to the college. I walked every day I could that the weather would allow. It involved walking through a ravine going up and down hill, then walking from one building to another throughout the campus. I loved it. And I joined the concert band playing the French horn. In the meantime, during one of the labs of my physiology class, we had to blow into this machine to demonstrate how to measure lung power. When it was my turn, I blew the darn needles clear off the measuring board! I had such excellent lung power, most likely from what I learned about breathing in band, plus all the physical activities I was part of and all the walking I was doing. I was 23.

This is long enough for this post. Next time I will take off where I've left off and see how I have come to be dealing with disability now.