Another Baby Step Forward!

You can read all about this in my Faith Journey With Jesus blog...I just want to tell you about it quickly and briefly now! I am excited about it. If you want details, check the other blog.
Today when I was cooking, which I always do sitting in a chair at the sink and stove, for the first time I had this sudden feeling of being tired of sitting there. So as I was cutting onions, I stood up, without really thinking about it, and finished cutting the onions standing there, leaning on the sink....but standing up! It wasn't until I was standing there that I really thought about what I was doing and how long it had been since I had stood at the sink to do any cooking. I even sit in the chair to run water until it is cold enough to fill my water bottle for drinking. So standing there to finish cutting the onions was fantastic!

By the way, I made my dahl today....but I tried making it a different way, basically from what I have been finding in the cooking videos, is my version of makhani dahl. It's good but really could use more spices. I think mine are not as strong as they were and I need new ones which I hope to get soon. Sorry, I didn't take a picture yet. Tomorrow morning after Daughter and I go shopping, we are planning on celebrating Mother's Day a bit late by making those gulab jamuns finally, and then I want to teach her how to make roti and puris. I hope Grandson will allow us that time without getting grumpy. At least we won't have to cook the dahl since it is already done. After sitting in the fridge all night, it will taste better tomorrow.

One Year Ago Today

Has it been a year already? Or has it been ten years?

One year ago today I was fired from a job I really liked. Not because I wasn't doing a good job. In fact, the boss said my work was fantastic. So, why would they fire someone who was doing such good work? Because I was sick--too sick to continue and be a liability to their company if something should happen to me on the job. I wasn't a permanent employee, but a long term temp worker, having been there 15 months.

Is it the anniversary that has me in an a-fib episode today? Or is it just one of those regular occurances after having a busy day the day before? Actually I had a busy, full weekend starting on Friday with the day spent at Daughter's house. Saturday I spent all day going through all my photographs and sorting them into three categories. Yesterday I actually made it back to church for the first time in many months. If I remember right, the last time I was in church was last June. I think I had been managing to get there about once every other month since I had stopped going weekly because of this a-fib. I was so happy about getting back to church that I took my own picture after I got in the car. Even my arthritis was cooperating, allowing me to walk without pain, not just yesterday, but Saturday as well. It could be that subconsciously I am thinking of the way I felt a year ago today. Maybe it is just the combination of everything.

The doctor's office called earlier. They apparently just got the results of the monitor recordings when I had to wear it for those two weeks awhile back. The doctor has decided to take me off the flecainide as it isn't working for me anymore. I won't know what he will replace it with until next Monday at my next appointment. And he is having me go back on the coumadin. Darn. I hate that stuff. But if you want to talk money, it is MUCH cheaper than the flecainide...like by $100.

All I have done today other than my usual call center job is rest. That is how it always is right after an episode starts. This one started during the first few minutes of working today. I particularly hate when it starts that way because at first it just knocks the wind out of me and that makes it hard to talk much. Not good for a call center employee whose job relies on talking. Oh my, that just made me think that my mother would have said that call center work is perfect for me because I have always been one who talks a lot. In fact she used to say I was vaccinated with a phonograph needle. Are any of my readers old enough to remember what those are? Well, in a-fib, talking is minimal...breathing is priority, rest is mandatory. It is the days like today that remind me where I was and how I felt a year ago today. I was on that day just 10 days away from a scheduled cardioversion. (Two scheduled cardiversions never happened because I apparently "scared myself" back into normal rhythm just before time for the proceedure.) Also just 10 days away from the birth of youngest Grandson.

So, this past year has been filled with all kinds of emotion, as well as all kinds of events. Getting fired, winning a battle against the company for wrongful termination with unemployment, but not being awarded benefits because, in their words, I was too sick to work, so until I was able to work full time, I could not get the benefits. I also went through the process of applying to Social Security for SSI and SSDI, having the support of the congressman for our district, and the long wait while they made their determination on my eligibility. In addition to all this, there was the dealing with Mrs. Landlady concerning keeping my home. With the help of two churches, and the Bureau of Vocational Rehabilitation, I kept my home, got medicine for a month, and got set up with everything I needed to be able to do this call center job. When it all came together it happened almost simultaneously within a two month period in which I got SSI, then got SSDI and started working in the call center. The rest of the year has been spent in settling into the job, getting accustomed to being disabled, and working to get better. This weekend seems to me to have been a wonderful ending for this past year even if today is not. To have had three perfect days in a row, well that hasn't happened in a long time. Yesterday was the closest to normal that I have felt in probably two years since I got sick almost two years ago.

So what do I have to say to anyone out there going through this kind of deal? Don't give up. Hang on, get the help you need, pray, have faith in God. If the ones you always thought would be there for you disappear, don't be angry with them. They don't know how to respond. Forgive them, love them, and pray for them. Rejoice in the ones who do show up for you. You are going to make it and get through this even if it seems like it is taking forever and you can't see the light at the end of this particular tunnel.

What do I have to say about still being sick, just not as bad as I was? I take this all as a reminder of where I once was, and how God has brought me through it all, and that He is the One in control, not me. He is the one who owns each and every breath and heartbeat. I have no control over either. And God is Good All The Time! (I Peter 5:12)

Health, Stress, Weight, and The Road Back

Tonight's blog comes with a bit of a warning label. It is long. It can be considered serious, maybe even something of a "downer". But if you read on...it is going to end on a very positive note.

The doctor appointment Monday was a good one, but once again I had gained weight. I was NOT happy about that. So, even though those photos (previous blog) look so good, I am going to have to temporarily keep away from those kinds of temptations. At least until I can tell myself that it is much better to take home a doggy bag...which Daughter and I both did. And it was even better the second heating. As in all things we don't like to admit to ourselves, there eventually comes a point where we say Enough Already! I have said that about my weight many times over the years. And many times over the years I have been able to lose weight. I will again. But this time there is a big difference from previous times. This time there is a different attitude, and a different overall outlook on my life. And the change has been so very gradual as to have, at this point, seemed to creep up on me. What I mean by this is that there came a point here recently where I suddenly realized some things that I just hadn't figured out about myself before.
Yesterday I was talking to someone about these very kinds of things and I told her that there is a phrase sticking in my mind lately. The Road Back. Nothing reveals to you how sick you were until you start feeling better. And I am a person who has spent her entire life in a constant state of denial about certain things--especially when I am focusing all my attention on other things that have to be taken care of to the exclusion of taking care of myself. To be honest, I have never fully taken care of myself in a healthy way, because from my earliest years I was already taking care of myself in the way of self-preservation. I am not going to go into the issues that brought a lot of my current problems to the surface. Just suffice it to say that I did not live in a totally healthy atmosphere for a young child. For the most part it was good, but there was the awful stuff which involved different kinds of abuse. Denial quickly became a part of my life at a very early age.
Then if you look closely at the picture of the little girl on the left side of the blog, you can see that the little girl (me) has legs that just don't stand right. And if you look really close, maybe you can see that even the knee caps seem to be in the wrong place. I grew up my entire life being told I couldn't do this or couldn't do that because I had crooked legs. As I got into the ages of trying to decide what to study in college, the what I coulds and couldn'ts got even bigger. But I am still in denial at this time. I did whatever I wanted to do as a child even if I was being told I shouldn't do it because when I got older I would pay for it. I was clumsy. I fell down a lot. I ran and played with the rest of the kids, but I didn't keep up very well. I hated the orthopedic shoes I was always being told I had to wear. I didn't wear them anymore than I had to. I wanted to be normal just like the rest of the kids around me. In high school and in college, and in my jobs, I always was on my feet. I was warned that the more I was on my feet, the worse my legs would be as I got older. Denial. Not me. I was going to be just fine. I was fine then, so I would be fine later. I wasn't really fine because everything I did was already causing a lot of pain that I refused to believe wasn't the same as it was for anyone else, and I did nothing about it. I had convinced myself I was not in any more pain than the rest of the world was. Maybe since I was in denial about my health it helped to make myself believe that everyone else was like me instead of me trying to be like them.
Another warning was that I needed to keep my weight down because that added to the leg problems. I tried. I was put on my first diet when I was 8 years old. Now at this point, let me tell you a bit about that. Up until I was 7 or so, I was not a heavy child. But in my subconscious I decided that some of the abuse would stop if I were ugly, and I thought being fat would make me ugly. The weight gain all started then and in spite of all my attempts to lose weight, I kept gaining. I would lose some, gain more. The Yo-Yo pattern we all know about today. Dieting actually makes people fat. We need to eat right...eat healthy....but not diet. And not deprive ourselves because we set ourselves up for failure right away. I just have trouble doing all that.
Now we are hearing how stress contributes to weight gain. I don't know all the ins and outs of that and I am not into all the so-called quick fixes about cortosol and stress and weight gain. But, what I do know, and what I am figuring out...what I was talking about here earlier about this "knowing" sneaking up on me, is that stress has played such a huge part of my life all of my life, since earliest childhood and on until even today. I know stress is part of everyone's life. But each one of us deals with stress in our own different ways. Some are good at it, and others are not so good at it. I am one of those not so good at it kinds of people. Actually, maybe that is not true. Or maybe what is really true is that part of dealing with stress for me was my poor coping mechanisms. I eat. And eat. And in addition to all this, I have to deal with all that denial stuffed deep down inside of me. Well, what do I stuff it with? Food, of course.
Well over the years I have done a lot better with cutting back on the eating. I have made some pretty major changes, actually. The problem is, that over the years, as my pain increased, my activity level decreased. I didn't tell people that I was in pain. I am not sure I would have recognized it to be able to tell them...my denial was so ingrained. It was pain...wasn't everyone in pain? So, shouldn't I be doing what everyone else was doing? And due to the abuse in my childhood and teenage years, I believed I was somehow deficient because I was not just like everyone else...not just physically, but in other ways too. So...pain becomes very well acquainted with guilt. If I didn't do something all the way or correctly, I felt guilty. If the reason I didn't do it was because of pain, I erased the pain part...and replaced it with the me who was told I was no good. Now don't ask me to explain how a child interprets things. I don't know. Like in this...why could I tell myself my legs were okay and I was not different...when they were not okay. Yet at the same time, I could let someone tell me over and over again that I was no good and that I believed. I had it all twisted and mixed up. You can imagine what this did as I grew into an adult.
And to feel better about all of it, I ate. To get through problems whether they be with normal every day things we all deal with on a daily basis, or something unexpected that comes into all our lives occassionally, I dealt with them all by eating.
Raise your hand if you have been in this position too, whether it be with food, drugs, alcohol, shopping, gambling, or any other destructive thing we do to ourselves to help us cope.

So, I started this with that phrase "The Road Back". This phrase popped into my head last week sometime I think. I was pondering this realization of how sick I had really been since June of 2006, and that actually it was probably building up before that. I remember how bad I felt. I remember at times feeling like if I took one more step I would die because there were times I felt my heart was just going to explode inside my chest. It wasn't pain...and I never had a heart attack. Even before my atrial fibrillation went chronic rather than occassional, I was sometimes feeling that bad. I was in vocational training classes full time evenings and working full time days. I was exhausted, but it took a stress fracture in my toe/foot to slow me down. Something had to give. Because of the hectic schedule I only had time for fast food in between shifts, so I was eating absolutely horribly unhealthy food. But the old guilt was more powerful than the pain and discomfort. Other issues were also at play in this and the stress level was extremely high. And I stuffed all of it so I could just keep going...like that everready bunny. If I didn't keep going, I was just like I was always told as a child...no good...a failure.
Do you know what a nervous breakdown looks like when it only hits you physically??? Like me the past 2 years. I fell apart physically probably because I was in so much denial that I wouldn't let myself fall apart mentally or emotionally. The Road Back takes a lot of turns. The Road Back covers a lot of territory. And as I am realizing today, The Road Back takes a long time...the sicker one is, the further we have to go to get better. Today when I am disappointed in myself because I can't do something I want to do, I stop thinking about being a failure. Instead I may try to find a different way to do it. Instead, I remind myself that my heart was stressed to the ultimate limit. My doctors feared heart failure and kidney failure when I was at my sickest. Thank God all tests came back normal. But still, the heart is a muscle and if a leg muscle can be strained, cannot a heart muscle also be strained? The heart being what it is as the organ that keeps us alive...that pumps all that blood and oxygen through our bodies, if it is strained, and for a very long period of time, it just goes to figure that it is not going to feel normal again very soon. It needs time to get better. The legs hurt. Oh my do they hurt. But for the most part I can deal with that. The issues still having to do with the heart are what are slowing me down the most. And I have come to think that when the pain is at its worst, it causes another atrial fibrillation episode which is one reason I am on this monitor.
My weight has got to start coming down. I will not allow it to go any higher. Thank you again Richard Simmons for that sit down exercise video. That is going to help me out a lot to keep me from being bored trying to exercise sitting down. Thank you all my doctors and everyone else I have gotten help from, including various counselors for the mental health issues from all of this. Depression is also a big problem for people learning to accept disability. Stress being what it is in regards to atrial fibrillation, especially for me, counseling has become a necessity. In the past, that would have been something that convinced me I was still a failure. But you know what? I am not a failure. I never was a failure. If you are in counseling, or know someone who is, give them your support and encouragement. They are doing what they need to do. In fact...when most of the rest of the world around me was telling me to keep going, and not quit (work that is), and didn't really understand how sick I was, it was my counselors who kept me going. It was my counselors who kept being the ones telling me maybe for the first time in my life, that I was doing what I was supposed to be doing...doing what I needed to be doing...and making the right choices when the world around me was making me feel like I was making wrong choices. I am not sure I would have gotten through the worst part of waiting for the determination of receiving my disability benefits had it not been for the way my counselors kept telling me that I was doing what I needed to do to take care of myself.

Here is the upbeat part you were waiting for...I got my disability benefits, and on the first try. I am working part time to suppliment that income. (How many times do we who receive help from the government we paid taxes to, get ridiculed for being a drain on society...to those who complain about us--get over it!!! That's another blog maybe next year LOL). I have had a lot of the stress-causing issues taken care of in the past few months. I have not been in chronic a-fib now for several months although I still have a lot of periodic episodes that may last up to a day or two...not so much now. I am off of 3 medications. I might get to have one more medication changed for a less dangerous kind if this monitoring goes right. I had shingles over the Christmas holidays--YUCK! I hope I never get those again. But once I got past that, I have been steadily been feeling better every day. I still have days when I feel lousy. But there has been a great upside. For instance, I am quite sure that even 2 months ago I would not have been up to doing these blogs. I couldn't even motivate myself to do a regular journal like I used to do before things changed so. Denial wants to rise again at times because I can feel so good I want to get up and go do something simple only to find out when I try that I am forced back to my chair just to breathe. Weight loss will play a huge part in that also. And figuring out that extra activity that causes more pain than usual, and makes me more tired than usual, triggers another atrial fibrillation episode is something else I have to figure into the equation. So there is the cycle...to lose weight, exercise...to exercise I need to feel better...to feel better, I need to lose weight. LOL But it will happen all in a good, healthy time. No more trying to hurry up and get it done. Realistic goals I have never really set for myself before. But now I have my goals. And I am making new goals all the time as I feel better...but all in good time. I need to lose a lot of weight--no I am not telling how much. It is going to take time. Especially if I want to keep it off. I have been sick a long time. (Denial--I never used the word "sick" to describe my a-fib until this past year and I have had it for almost 14 years. It had to go chronic before I accepted that I was sick.) It is going to take time to get fully better. Like 2-3 years is what I am giving myself. And if I don't make it in that time, I have given myself permission to take longer. I have also given myself permission to reach a realistic weight loss goal instead of trying to make myself look like--well what a model would look like if she were an old granny like me. I want to be healthy, not skinny. If any of you wants to join me in this weight loss journey, feel free. Actually I would enjoy the company.

Arthritis, Shopping, Exercise, and More.

My daughter and I went out to breakfast this morning with her 10 month old son. Then we went to the WalMart to do my shopping. I haven't been able to get out much this past month because it was just too cold, and this cold doesn't work well with my knees. So, I enjoyed getting out and about. March definitely is a mild lamb today. The sun has been shining most of the day and the temperature is just right for a winter day. With my knees and heart the way they have been the past year or so, I have needed to have help with shopping to get my purchases into my home. So I rarely go to the store alone anymore. Once in awhile I go just to get out, when I know I am only going to get a few things that I can carry in one trip. On those trips I have to really think ahead about what I will be buying and how they can be bagged for the easiest carrying.
Shopping is just one area of adjustment when you become disabled. Like this job I have working from home. It is amazing that technology has come this far to be able to set something like this up in my living room allowing me the ease and comfort to work in my recliner. I have tried over the years to find work I could do from home so I could suppliment the family income while still being home for the kids as they grew up. I have always believed that raising the children is the most important job there is, along with being a full time wife and homemaker. In many ways I have felt that I was born in the wrong time period because it seems that people have placed very little importance on traditional family roles in the last 45 years. Anyway, before I travel light years away from what I am trying to write about today... With all that trying to find something that would work for me, I never succeeded. So, I was an off and on full time wife, mother, and homemaker while I worked in nursing homes and other places over the years. Now I have this job and I can stay home to work. Fortunately I am not still raising kids because I would still need a babysitter to do this job. Working in a call center requires silence in the room around me.
Another area I have had to adjust to the change is that I sit down to do everything. EVERYTHING...except sleeping of course. I do walk as much as I can in my home, and outside. I have a handicapped parking permit which I use, but I walk into the stores or other places, and back out again most times. This has been quite enlightening because I use the store-provided motorized carts to get around the stores and it is interesting how much is out of reach without assistance, or without having to stand up which isn't easy since I tend to stiffen up sitting in the cart seat. Then it feels good to walk again when I am finished with the shopping. Cooking and cleaning up the kitchen is also done sitting down. I have my own chair in the kitchen with pillows on it to raise my height to a better position for the work I have to do there. Not all the work I want to get done gets done regularly simply because of it being out of reach and getting it done depends on how my legs are feeling that day. Hey, guess what! One of my wishes over the years has come true! I get to hire someone every couple of weeks to come in and do the major cleaning that needs done. Not exactly Alice of the Brady Bunch, but it works for me.
Well, with all the sitting down in my life, I decided months ago that once I started feeling better, I would be adding additional physical exercise to my life, including walking when I can, even if it is only a few feet at a time. Believe me, one trip the length of my home is just about all I can handle at one time. Little by little I began adding small amounts of movement while I sat, even though even the slightest movements could cause me chest pain and shortness of breath. Being a former Activity Director in nursing homes had taught me that it is very possible to keep fit or improve fitness while sitting. Gradually, those small movements grew to where I was first able to do half an hour of regular exercise while I was working daily. That has grown to an hour and sometimes more each day while I am working in the call center. Those are mostly leg exercises because my hands are busy with the computer. I finally got the DVD I ordered online a few weeks ago--Richard Simmons--my favorite exercise guru. I had checked his website to see what he had in exercise tapes, etc., and found he had this exercise DVD for people who cannot stand up to do exercises. I got it yesterday, actually, and opened it and played it this morning while I waited on my daughter to arrive. Even did some of the exercises. It is continual exercise all through the video--aerobic exercise. I will have to keep at it to learn his routines, but already I can tell it is going to be fun exercise. I used to exercise with him every morning when he still had his tv show.
My biggest obstacle right now is reminding myself not to overdo it. I am finding that on those days I overdo it and get too tired or too achy or both, the next morning my heart is out of rhythm, which only adds to my general discomfort and prevents me from doing much of anything. The other day when I had my meeting with my long lost cousin, I was really exhausted when I got home. I had not had that much activity all in one day in a long long time, and the next morning I was sick again with my atrial fibrillation. So, this disability thing is an ongoing educational experience, with each day teaching me something new.
Overall, back in the summer when I was fighting to survive yet another financial struggle while waiting to get disability approved, I decided that I would give myself 2 to 3 years to rebuild my health and strength, including losing weight and exercising. I do not want to spend the rest of my life in a motorized cart or staying home if there is nothing provided for the disabled. As it is, unless I am going to a restaurant, church, family home, or friend's home, I stay home. I have to know before I go somewhere where I will have to park, how far I will have to walk before I can sit and rest (can't just plop myself down in the snow), and whether or not I will have to walk once I get there. So, that has limited me to just shopping WalMart most of the time because they offer several carts while the other 2 main stores in town only offer 1 cart each, and the other store offers nothing. This is March 1st and my goal for this early spring is to get stronger so that this summer I can be out and do more. I am really looking forward to being able to go to the park with my family and grandkids just to watch them play, and not have to stay in the car.
You know, it is true and I have experienced this a lot over the years. You just don't know how sick you were until you start feeling better. June 2006 until Jan, 2008 was a rough period. It has only been since New Year's that I have realized that I am really feeling better. I am not going to go back to feeling that sick again. Anyone want to join me?
Another thing I wanted to say before I close this post is that everything I am learing and going through stays in my memory and becomes something I can use later. I think that is important for everyone to do, because if we are going through rough spots and we learn nothing or take nothing with us as we travel life's journey, what do we have to offer anyone else along the way who may be struggling in the same ways we have been?