Monday, November 21, 2011

#99 - Changing Directions

Having to deal with Addison's disease for over ten years now has been a huge challenge. However, what made it more challenging was dealing with other medical disasters as Addison's dangers made things more tricky. Most people with this condition know that going through any surgery with Addison's adds a heightened level of risk.

Having a rather quick surgery for something routine is still scary, but I've had to face a few surgeries that are complicated, lengthy, high-risk surgeries within themselves and the Addison's disease only added to the surgeon's full plate to keep this patient alive.

One of my surgeries, in 2009, had followed the discovery of a spine injury and the collapse of my neck...three vertebrae had basically crumbled and this area of collapse had pressed completely in on my spinal cord so that only a pin sized amount of spinal fluid was seeping through. I had been having great difficulties for quite some time...had lost feeling in my arms and legs, began having trouble walking and the worst part was the sudden moments of not being able to breathe...not as if I were having lung problems, but it was as if my functioning part of my brain that sends signals to the lungs had been damaged and the in and out motion of breathing would go haywire while I struggled to not panic and to just breathe.

I'd gone to several doctors, went through pulmonary one could find out the source of the problem until one day I had an MRI. There it spine was horribly distorted by the collapse and the spinal cord was severely compromised. In addition, I had developed a huge lesion on my C2 spinal cord area from the damage incurred. Things were scary. So, I had reconstruction surgery to build a new spine in this area and I am held together by plates and screws installed through the rebuilt cadaver bone --- from the front and the back of my neck.

But, the recovery would be long. I would never be the same, but the gasping for air moments were passing. After surgery, I had such horrible swelling in my neck, up to my face that I had many, many moments of not even being able to swallow my own THAT is swelling. I had to wear a hard support neck brace for three months --- in Texas. This neck brace was partially made out of heavy plastic with metal bracing running through it. I say, if you want to develop more character, try wearing a bulky neck brace night and day as it presses in on the front stitches across your neck and as it hits the back of your neck full of staples. "Comfortable" is not a word that you will know, not for many months.

And the heat generated through your body when your neck is enclosed in a plastic contraption can make you feel as if you are being smothered. The fortitude it takes to not run for the hills as your neck flops back into a broken mess is a challenge in itself.

But, I handled it. I needed help only for a few short days, then I was back on my feet and it was difficult to keep me down. I even went to work two weeks after my surgery, like a crazy person. But, since I was self-employed, that meant I was accountable to myself and would not earn a living unless I got busy. I had a youngest daughter drove me to it and I had to tuck extra gauge at my front incision and back incision. beneath the neck brace, so I could be bought extra time before blood would start to show through...I looked a mighty fright, but did my best to assure my clients that it looked worse than it really was. Yeah, that was a lie. And considering that my client was a pastor of a local church, that lie was intended to put him at ease, so I hope the Lord understood.

After months of recovery, I had yet another huge medical hurdle with three more surgeries that would nearly put me in the ground permanently. But, most of all, I didn't know how I'd keep going through life with these constant battles knocking me back to the ground. Each time I tried to get up, it seemed another blast was heading my way and sending me through the ringer.

Soon, I realized that I just needed to stop everything I was doing and rest. Actually, my doctor told me that I was nuts to try to live a "normal" life because I needed to get out of denial and realize that my body was not normal and never would be. It was a brutal conversation. He told me to start saving my energy and abilities for the more important things in life. I listened. I was worn down. He knew it and confronted it.

I needed to let my body recover without trying to put in a day's work. I needed to focus on what I absolutely treasured instead of trying to chase my former ideals of productivity. For me, being productive had changed to mean being able to walk around the house in excruciating pain, especially after multiple surgeries followed the cervical spine reconstruction. Soon after, I found myself with my 10th rib removed along with a large mass. But, it would not be over.

So, I began to gather my strength by letting myself be more still. Relaxing is not what I would say that I was doing. Even if I were sitting, I would not be "relaxed." Due to my body being battered and altered and sliced and diced, I would find no relaxation any more and this was a good reason to seek rest whenever possible. The constant pain exhausted me. There was absolutely no position for me to find that would be comfortable. I could not sleep for more than two hours at a time. Life itself was draining me of life.

Still, I pushed onward. However, I quit driving around because it was too painful to get in and out of a vehicle. More painful than I could even express to my family. Getting dressed was painful because I hardly had any part of my body that "regular" clothes could touch without sending me to the moon. Everything changed. Everything.

I began to limit my outings. Rarely did I drive. I could not move freely enough to drive with confidence, so I quit ignoring my body and made the right adaptations. Then, because of my medical hurdles, my income came to a halt. And my family is very accustomed to my income producing contributions. My income makes all the "extras" in our lives a possibility. So, I began to "save money" by staying home as much as possible...not spending any extra money, not wanting to waste any gas whatsoever, especially in these economic times with gas prices being astronomical. I got a cheap haircut once every eight months and cut my hair myself in between. The tighter times became, the more I'd pull back, thinking it would make a difference and that it would at least reduce some pressure off of my husband. I've denied myself many basics in life because I felt it would add up to helping out the family, but I'm seeing that all I am doing is contributing to my decline at a time when my body is ready to soar!

However, I've recently realized that I am strong enough to have more regular outings. I can drive with more maneuverability because my body has healed to a higher level. And, I've found that the sacrificial withdrawal from life to save my family money has really not even been noticed as a contributing's not really even appreciated and that is okay. But, I've come to another changing moment in my life, I'm not quite ready to play dead while I'm still living. For so long, I didn't want to spend an extra dollar on myself because I was always on the edge of toppling over into the end of life, but now I see that I should not deny myself the privileges of living because I AM still living and I am living quite robustly. I don't have to go out and spend money, but I sure as heck don't have to live with sitting here in a house twiddling my thumbs because it has become EXPECTED of me.

Over the past six months, I've seen a change in my recovery to the point where I am regaining lost strength. This has been crucial in my healing. It makes sense that the next step to follow is that I've not been as complacent to sit at home and to wait for someone else to decide to take me on an outing. These things are up to ME. I've realized, recently, that I am strong enough to go enjoy life outside of this home that has become my necessary confinement for MUCH TOO LONG and I am not waiting on anyone to catch up to me.

This past week, I've been reminded about some harsh truths...a recovery is not always a "recovery." You must find the point, especially after something devastating impacts your body, such as a spinal injury, to decide when the time is right for you to feel as if your brain and body are strong enough to support your desire to get moving. My spine is still in trouble, but I am no longer trying to appease anyone with my ridiculous sacrificial lifestyle of barely moving anywhere but inside this house. Those days are over.

However, I am fairly confident that many people who endure serious illness or injuries find themselves in similar situations. It takes a lot to get back out into regular life again and it will probably never be on the same level as it had once been...having to wait on your body to agree to do it is torturous, more than most people can ever understand, even my own spouse. Such complicated recoveries can be a lonely road, for the most part.

I may not have to go far from the house to simply get away and get out and get on with life, but I'm doing it. Sadly and joyfully, for good reasons, I'm no longer content to be here at home. I guess my returning strength hit a point where it snuck up on me, so now I am going to live it up and do all I can, for as long as I can!

And, my former thoughts of hoping that my morphing into a money saving wife and mother instead of seeing myself as a woman with lost abilities...that part of me is thankfully disappearing.

Still, I require very little. I've lived with so little for years that I'm accustomed to the simple life that most women would not dream of living. I feel stronger for it. My body dictated certain ways of life that were not free choices, but I adapted. However, now I am moving forward, wanting more independence, wanting more time out of the house to myself, for myself, and maybe this will free the husband who has times of being frustrated by my need for company and conversation. It's obvious that the pressure I put on him in all areas can be too much, especially if I talk about groceries...whew...that can be a tough one around here. So, I am backing off. Honey, never mind about the yogurt, the ham and the provolone really wasn't that big of a deal!

I am a woman who is extremely accustomed to being told "no." Either by my body's limitations or by circumstances...I'm actually peaceful and accepting about it, unless someone uses it as a forum to be ugly.

Regardless, these little moments are integral to creating big change. I'm very social and since my body is cooperating more and more these days, I'm getting back to socializing outside of the house. It's a good feeling. A really good feeling.

This week, I've already had several very important outings to signify my return to the outside world. The first was to welcome Pfc Cody Norris back home after his tragic, yet honorable sacrifice at only 20 years of age while serving in Afghanistan. I went by myself, in pain as usual, to stand along the road with the flag waving community to show our support as Cody's body was brought home for burial. Being a part of a military family, this was devastating. Cody signified a person making the ultimate sacrifice and served to give me even more strength than I had thought possible. His life came to a sudden end in battle at an age much too young to find an end. I thought about my personal battles and how I've been given so many chances, even if my body is forever altered and will be in pain and without full feeling in my limbs, I am here.

Today, I am thankful that I have more physical strength to carry me through and I will continue living to the best of my ability...just more often in the outdoor world than here tucked inside a house that has closed in on me.

And, I welcome myself back!


  1. Thank you for this post. I am glad for you that you are strong enough now to reach for a life outside the home. There are a lot of life lessons for me there too. I hope you will find much happiness in your new adventures.

  2. Thank you Callie!! I know that happiness is always available out there for us to find.


  3. Lana, I am shamefully behind in reading and commenting on my favorite blogs. Sorry. This was a great post, hitting some important things Addisonians need to worry about. Surgery is one, I have gone through that twice. Acccepting our limitations, something we talk about all the time, is a hard pill to swallow at times. Standing and honoring the Soldier on his way home was undoubtdly a stessful duty to perform. I am glad that some of your strength and courage is coming back.

    Stay well!


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