Tuesday, July 20, 2010
"When you get into a tight place and everything goes against you, till it seems you cannot hold on a minute longer, never give up then for that is just the place and time the tide will turn." ~ Harriet Beecher Stowe
Another rough day - my husband struggles, my FIL is not doing well and Karen's emotions are all over the board today - BUT, I rally. I have reached out and called some very special people to me and it helps more than they know to be able to just get it out.
We finally have an appt to see the surgical endocrinologist for Thurs at 11am regarding these enlarged lymph nodes - PUT THE PRAYERS UP FRIENDS that we will not get bad news. This is my most worrisome appt and I just pray. We take these appts one step at a time and maintain a positive attitude no matter what.
I was feeling in a tight place today and felt that quote in my mind this afternoon. I develop some major attitude when I get in a tight spot and the hellion in me just soars. Its that "fight or flight" and this lady will fight.
I also know that many people on their journey's feel like they are in a tight place or in the corner when nutrition or exercise plans cannot be met or are chosen not to be met. All of this can become obsession over some time and this is where people fall and potentially cannot get back up. But instead of falling - take that "fight or flight" attitude. It is a time that you must look at your goals and direction and re-assess what and why you are doing what you are.
"Dieting" is causing much burnout in people and appears to be causing all kinds of problems that aren't intended to be happening. I have spent since 2004 dieting, exercising with my goals to compete etc - I learned much and my mindset has gone through many changes in terms of my training and nutrition philosophy. I have found that many of the methodologies out there are just not necessary and have more poor outcomes in the long run - not a direction we intend to go.
I see and hear so many people struggling - struggling trying to maintain appropriate nutrition for their goals as an example. They aren't always able to understand why it has become problematic and in the end they go so far off plan that it is a nightmare to come back on. So does this mean that their actual goals are right for them? We would want to wonder that and try to determine where it is all coming from. Quite often we just plain lose steam!! Oh dear the feeling of crisis that comes with that - it shouldn't - it gets real old being on a non-stop diet.
When you can't stick to plan and your off-plan more than you are on-plan this should be a real HOT BUTTON - pay attention to it - spend time with it, think it through and NAME IT. Something is trying to speak to you and you need to listen. There is no point ignoring it for it will not go away. Just like you can have over-training with your exercise program, you can also have diet burnout - recognize it if you can. It does not mean that you have to go off the deep end eating everything and anything you can get your hands on. What it does mean is that you need to take some time away from it - maybe a week or two, but try to keep it healthy but not so strict. Take a breather and see how you feel in a week or two.
When you get cornered in a tight spot - whether its burnout or any number of things - get that "fight or flight" attitude and reset your direction.
Monday, July 19, 2010
"Courage does not always roar. Sometimes it is the quiet voice at the end of the day, saying "I will try again tomorow." ~ Mary Anne Radmacher
I have reached deep today trying to bring to surface the strength and courage that I know I have. It is always there for me even when I don't think that it is. I know each day will be a challenge - biggest with my emotions - if it doesn't work for me today then yes "I will try again tomorrow".
It was tough going back to dialysis today for my husband because many questions coming from everyone and he wasn't ready to deal with all of that. I was able to intercept on many and completely stop them and on the others just gave them a look that told them this wasn't the time and it worked. He needs time to absorb, he needs rest and peace from all of this when he can, and he needs people to not bombard him as they did today. We got through this day and are thankful for each and every one.
I spent the entire treatment time today making appts with different doctors we need to see regarding all of these unresolved medical issues. I am not sure I have shared some of these things but I would like to. They did an upper body ultrasound and found he had a great many borderline enlarged lymph nodes. They aren't so worried about the enlargement, they are worried about the number of them - we have an appt to see a surgical endocrinologist to review this ultrasound and give his opinion and do whatever else may be needed to define this problem. I made an appt for him to go for an in-clinic full pulmonary function test to see why he is having so much trouble breathing. We do know that he has atelectisis in both lungs in the bases - this is due to his lack of diaphragmatic strength from his paralysis. Some of the alveoli kind of collapse on one another from lack of use if you will and it made it look like he had pneumonia but he didn't. I made an appt with his Neurologist also so we can start trying to figure out what is happening to his mentation. We will see about having an endoscopy done to officially identify what his stomach issues are - he was on 2 medications that can cause mentation issues and we discontinued them but one of them was Pepcid that he has been taking for his stomach and we have since had to restart it. He has not been able to eat for 3 days now due to severe stomach pain and indigestion - he is fading away and has lost virtually all his mass. He is pondering whether he wants to go through it.
This will be a long month or so but I am praying we can at least get resolution and answers. I am wanting to have a meeting with dialysis doctors to have them talk with us about the effects of this whole long term dialysis. The science for dialysis is very deep and it goes beyond my comprehension sometimes and the effects of long term are not well documented because most people don't live long enough to be on it long term. In the meantime we will take each day as it comes. We are spending alot of time talking about our feelings and I know it will help both of us as we move forward.
So I move on now to my other topic for discussion tonight. My husband has disease from an injury long ago and has had no control of the progression. He has always done his utmost to take the very best care of himself that he can possibly do. He follows the dialysis diet to a letter, he exercised each and every day since he was injured (up until a few years ago) and now he does what he can. So I look at him and then look at all the people around me who don't take good care of themselves - sick or not.
My husband has no control but for those who do - young to old - why aren't they doing it? It takes only a second of thinking about it to know that we should all be doing everything we can to control our own lives and health before we ever end up in a position where its too late and we can't. My husband would give his right arm to be able to be healthy - he has always worked for that - yet he can't control, that was taken from him long ago when that car lift crushed him.
On the unit we were on in the hospital there were 2 obese patients in there - it would only take looking at them in those circumstances for anyone to run for their life. It is purely pitiful and yet you can get so angry that they ever let it go that far. A life - where did it go, now bedbound and all kinds of health issues - where do they go from here, no-one knows. It made me go from one end of the spectrum to the other with emotion as I observed them day to day. Very sad ---
When you can feel yourself connect with that emotion - of what it must be like to be in that body - for me it only served to solidify why I do what I do for myself and others. I cannot imagine fighting that battle - yet I can commend those that find the strength to. Health can't be tagged with a price tag - there is nothing more valuable. We all need to keep preaching, keep doing, keep reaching out - one person at a time. We don't need skinny - any amount of fat loss will have positive effects, we may not be able to see them but they will be there. The sticking power of the right philosophy is what moves you forward -- forget what others are doing - as long as you keep dropping that number your giving yourself life - WHAT A GIFT.
Sunday, July 18, 2010
I sit back almost in another world today - from the outside, looking in. We both slept exceptionally well last night but awoke to conversation that has to be had - I CRY, WE BOTH CRY. I sincerely hope that you don't mind me expressing what I am feeling right now because for some reason I am feeling so alone today.
Bern has slept just about all day and has eaten almost virtually nothing to speak of - but - he started the day asking some very difficult questions - questions I just knew he had been pondering in his mind this hospital stay and somehow knew he would ask once we got home. Things like do they think I have cancer, am I slowly dying, am I getting dimentia - what's happening to me, I have never been this sick before and with this frequency -I CRY.
I am a nurse - but being a nurse is meaningless when it comes to facing things with someone you dearly love. The writing, I believe, is on the wall - yet my heart hopes that things will turn around - yet knowing they cannot. As I told my husband today - TIME is what we have and time is what we need to value the most no matter what comes to be. It does not make the task ahead any easier to deal with - WE CRY.
I watch him sitting in quiet solitude today looking out the french doors in our living room and saying - you missed a bunch of weeds and flowers on the hill, who put this chocolate all over the screen door, help me take my pants off when he really wanted his shirt on - I SOB watching him go through this. The worry of the unknown that he is trying to process, the fear of the things that are known and a struggle with the knowledge that he has.
It has been a very hard day for both of us as we try to come to grips with everything that is happening. For me harder too because I have to watch him go through this and what I can do is minimal compared to what I would like to do. I have sobbed all day today and feel like a freight train has hit me and although I know how therapeutic it is - it does not feel that way now. I have been here before with my daughter - lots of pain returning and I know full well it is all a part of the process. My inner strength will come when it is needed and I am secure in that - I must go through these emotions as painful as they are and so too must my husband go through his own difficult emotions.
He carries much emotion and it is so contradictory - he is so very tired after all these years and yet he is not ready for his life to end and he knows there is nothing he can do. No-one says that it is happening right now but we both face the reality of what his body is doing. It breaks my heart as I feel like I am watching him get one thing at a time taken from him - he has had far too much taken from him already - I STRUGGLE. I will be okay with this because I struggled with this before -
It has helped to be able to just put some feelings to paper before the evening comes to an end and I sincerely hope it has been okay to share and get some virtual support. It just feels right today to come here for that.
Friday, July 16, 2010
If hubby feels better, we will go home tomorrow. He is not completely better but will surely heal better at home. I will blog with complete update tomorrow. We were inundated with drs today before the weekend and there was no getting out of here to go home. Bern has not felt great today and its dialysis day so maybe tomorrow will be great. I am staying here overnight and we hope to be heading home right after breakfst.
Bern sends his thanks and appreciation for your prayers and support and for taking of his wife. Everyone have a great weekend.
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