The Beast Within… (repost)

Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

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The Beast Within…

Living On Oxygen for Life

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

What brought me to think about Suicide…

Living On Oxygen for Life

A good friend of mine wrote this poem and it really spoke to me. It’s about a topic that isn’t talked about enough. Please read this poem and then I’ll begin to outline my experience with this subject.

WHAT WOULD HAPPEN

What if we never wake
To see a smiling face
Upon our families lips
What else could take that place?

Your story has yet been told
But your fear is not just yours
That it won’t be heard again
Through your children’s wars

If you join the rested dead
Because the memories hit too hard
Your fable of what could have been
Will end, silent and barred

So do a favor not for you
But for those that stay behind
Never end your silent fight
For what you couldn’t find

Because all that’s lost is right in front
When you awaken a new day
That pistol’s meant to protect
Not take your life away

Be the one that won’t back down
And the parent that won’t say NO
Because when you’re gone it all goes numb
There’s no rewind for that low

The eyes that stare with crazy dreams
As you awaken from your past
Are the ones of the innocent child
That wants their parent back

When the words come out of you
That now is the time to go
Be sure your memories will not fade
When they sink you down so low

So live this life for those that watch
And do it as you should
But don’t be scared to reach a friend
That has been where you have stood.

Levi Bridwell
2-5-2016

Let me take you back to when I was nearly 15 years old and had just underwent a surgery that would change the course of my life forever. It was the most traumatic experience I have ever experienced in my life that left me with some deep emotional scars. The surgery I had, brought me so close to dying that even the doctor was freaking out (professionally, of course). He allowed my sisters, my parents, and my grandmother to come into the ICU two at a time to sit next to my bed for as long as they could bear to. I was a mess. My older sister was so upset that she started crying and had to leave the ICU. Her boyfriend stayed with me holding my hand. My little sister came in with our grandmother. I was so hot from breathing so hard that the doctor relented and allowed a fan to be placed pointed directly at me to attempt to keep me cool. I had a tube up my nose and down my throat to my stomach to pump out the flow of black bile that I was continuously vomiting up. I was dying and everyone knew it. Yet, I struggled to hold on.

When my little sister came in, and sat next to my grandma, she suffered quietly as she was always so sensitive to being cold. She sat in the direct path of my fan which was on its highest fan speed. I looked at her through the bed rail and I felt so bad for her. My heart rate was up to 200 bpm and I was sweating. I couldn’t turn it off for her. So, I did the only thing I could think of… I gave her my bed sheet for her to shield herself from the fan.

I will never forget the look on each of my family members’ face as they came to sit with me. There’s so much more to this story but I’ll leave it for another time. I just want you to remember this moment as I jump you forward a few years to when I was nearly 17 years old.

Life for me changed radically when I was nearing 17 years old. I started having blackouts. I wrecked my car numerous time due to blackouts, I tried working while I went to high school which made me continuously tired. I became hypoxic, forgetting homework assignments and where my classes were within the school. My psychology class assignment was to write an autobiography which pulled me so deep into depression that I would lock myself in the bathroom and cry. I started dropping classes that I didn’t need credit for to graduate because I was so tired and I was going to fail them.

With all of this going on, my parents had been divorced for about 3 to 6 months and we ended up moving outside my school district. We had to drive ourselves to school everyday instead of switching school which I do not think I could handle.

And then…. I got sick. Really sick. Pneumonia. I was so sick that I was carted off in an ambulance from my mom’s house to the hospital in the middle of a snow storm and stayed for 2 1/2 weeks making me even further behind in school. I had incompletes, Ds and an F on my report card with so many absent days reported that I remember thinking that there was NO WAY I was going to graduate from High School since this was my Senior Year. Plus, I had to quit my job.

Among all of that, my doctors realized that I needed supplemental oxygen at home at night. Everyday I thought about killing myself. Every. Single. Day. I doubt even my best friend knew I was thinking about suicide. So, I come home from a second hospital stay from rebound pneumonia and started my attempt to catch up on my school work. I couldn’t do it because I was such a mess. My mother came into my room to ask me if she needed to find some help for me. That’s all she asked and when I said, “No, I can handle my problems,” she didn’t ask anymore.

When I was like this, I closed myself off, became quiet, because any more added pressure would have been just too much for me to handle. I kept thinking back to the last surgery I had and the looks of my family and KNEW that I could never try to kill myself no matter how much I thought about it. I couldn’t do that to them. I didn’t think anyone noticed the turmoil that was going on inside me. Trying to deal with health issues, trying to graduate high school, dealing with a dysfunctional family life and more. I did graduate. My teachers passed me through due to my effort of trying. We moved to Texas.

Slowly my life started to change once I picked up an old Pentax camera, took long walks (finding a Pecan tree!), and learning to cook a few things for myself. I spent nearly a year just finding myself. Getting use to having my lungs needing supplemental nightly oxygen and learning to accept the future changes that will come. I know life will be ok for me but every-now-and-then I think of that surgery that very nearly ended my life. If I could survive THAT, then I could most likely handle the rest of this mess in my life. But, not everyone can, there are people out there truly struggling thinking that the only way out is through suicide. That’s not the answer. Getting help is the first step to finding your way through whatever life has thrown at you. Find a school nurse or counselor, a pastor of a church, a close friend or call one of the hotlines listed below and tell someone what’s going on that’s making you feel this way. Do it today.

Thanks to Lifeline Website, you can find information about what to expect when calling the Hotline.
National hotlines:

In the USA: you can call the National Suicide Prevention Lifeline free from anywhere at 1-800-273-TALK.

In the UK: you can call the Samaritans anytime, 24 hours a day, 7 days a week, on 08457 90 90 90.

In Scotland: you can call the Breathing Space phoneline, which is available 24 hours at weekends (6pm Friday – 6am Monday), and 6pm – 2am on weekdays (Monday – Thursday), on 0800 83 85 87.

A parent’s love… part 1

Living On Oxygen for Life

I’ve often wondered what my parents went through while raising me and dealing with my health problems. I had a challenging, but happy, childhood… but how difficult was it for them? So, I asked one of my parents what it was like. I grew up during the first 8 years of my life with my biological father. After my parents divorced, my step-father came into my life within the same year. Life was so different. I became a very stubborn and bullheaded child. haha! My step-father, who I look to as a father-figure even though he is no longer married to my mother, stepped in and took charge of my health. For that, I will always be grateful.

So, I asked him a series of questions in an interview style in hopes to help other parents out there who have a child with disabilities.

    Q. At the first moment you met me and noticed something was different about me, what did you think?

A. Having some idea medically about your condition, I thought of the many reasons that I had decided not to have children of my own because of my own problems and how little the quality of your life must be!!!I was told you would not live beyond 12 or 13 years of age and at the time, I actually thought of that as a blessing!

    Q. What made you want to step in and take control of my health problems by taking me to doctor appointments?

A. I began to see you in a different light as I realized you were a special person who had a lot of spirit and I just fell in love with you…Certainly, your problems seemed insurmountable, but you weren’t afraid to fight for your life, I realized just how wonderful you really were and if you could face death with so much against you, then how could I not stand with you too!! I knew just enough about medicine to see a path to help overcome some of your major problems and besides you were a willing guinea pig and fearless!!!

    Q. How did you cope with the challenges of the doctors and what they want to do for me?

A. If the term, “ nothing to lose “ means anything, then in your case, we were at that point. We knew you had pulmonary hypertension which was slowly killing you, so your heart doctor and I spoke of probabilities of you never coming off the table were extremely high, but the alternative was unacceptable! Granted I died a few times while you were in surgery, but you pulled us both through it. I had never faced terror like that even in Viet Nam.

    Q. At times when I was very sick from a surgery gone wrong and as a parent, how did you deal with the emotions that you felt?

A. Actually, all your surgeries were very successful which is why you are still here, with the exception of one. I call it the “ bridge too far “ which was for all intents and purposes was almost cosmetic in nature. We had discussed how you always disliked that your scapula stuck out because of your severe scoliosis and I researched it and found a surgeon in Oklahoma who could do a “ rib resection “ that would bring your scapula down in a more normal position. This involved actually cutting out a few inches of rib from your side and all should be well. Unfortunately, the lab didn’t do a total pulmonary functions test and when you came out of surgery, you had to go on a ventilator and couldn’t breathe on your own. I blamed myself for the outcome for many years because the surgery wasn’t absolutely necessary, and I almost ended your life. I remember coming home to be with you at the hospital the mid weekend while I had been at summer camp ( National Guard ) and was dying inside because I had to fly back Sunday nite, and you were getting worse.

Random Picture Day # 9

Living On Oxygen for Life

Hello my friends! I’m glad you follow along this adventure with me. Today, I’m going to show you three pictures from my life. That’s right… It’s Random Picture Day! I love Random Picture Day. They’re so fun!

About a year before these pictures, K and I were making plans to go with K’s family to Cozumel. It was all pretty exciting because I loved going to Jamaica for our Honeymoon. But my health started to decline again and I knew I wouldn’t be able to go with K on this trip. I was pretty heartbroken but I didn’t want K to NOT go because I couldn’t go with him. It was a big vacation with his extended and close family going to Cozumel. So, I told him that he should go and that he shouldn’t worry about me. I mean, I have my family who I could call if I needed anything.

I helped him pack and saw him off for this grand adventure without me. I was bummed because this was going to be nearly a week without him in the country. It’s different because I couldn’t just pick up the phone and call him. Remember, this was before cellphones and high-speed internet. No laptop with Skype or an equally easy way to communicate. Can you even remember those days? They seem so long ago.

Before K left, he told me to make sure I’m home everyday in the morning. I didn’t know what he was talking about. But the next morning, I heard the doorbell. I opened the door to a lady holding this:
flowersfromkev1

The next day, the doorbell rings again. I opened the door and the same lady was at the door again handing me this with a BIG smile on her face.
flowersfromkev

I asked the delivery lady what was going on but she just smiled and shrugged her shoulders. The next day, K was still away in Cozumel, and the doorbell rang again! I’m like, really? Of course, I was totally excited! So I’m stomping down the stairs, grabbing the doorknob and yanking it open to this:
flowersfromkev2

It was the same delivery lady and she was smiling again. I couldn’t believe that among all the hustle and bustle of K getting ready for this vacation that he thought about how I would feel while he was off on an adventure without me. We missed each other and this was a way he could let me know that he was thinking of me even though we couldn’t be together. There was only two other times that K has gone on adventure without me. After that, he told me that it just wasn’t the same to go on a vacation without me there to enjoy it with him. Here I was thinking that I didn’t want to hold him back from the fun he could have if he just went without me. So, did I continue to feel guilty for what I thought as me holding him back? Or did I trust what he said and love him more for the sacrifice?

Overall, he chose to live his life with me whatever that life together may turn out to be. Going through changes in my health has been difficult. It’s had drawbacks but we’ve always found a way to find an adventure together AND apart. Even though we were apart in this story I just told you, it was adventure we took together… connected by flowers.

Please take a moment to sign up to follow this blog. You can do that in the right column at the top. You will receive an email whenever I post on my blog. *hugs* to you all!! Be well!

Be your own health advocate!

Living on Oxygen for Life

We all hope that we don’t have to be hospitalized but sometimes it’s necessary. The best thing to do when becoming hospitalized is be prepared. Know that you are your own best advocate for your care. What that means is:

  • Listen carefully to what the doctor is telling you about your condition.
  • Ask LOTS of questions (especially if you are not sure what the doctor is talking about).
  • Make copies of documents of: Test results. Medications taken in the hospital. Plans of care in the hospital. Hospital release orders.
  • Know that there are only so many nurses who have a lot of patients to care for but please let them know if you need help. It’s important that you are getting quality care. If you don’t feel that you are, discuss your concerns immediately with your doctor.

If you can’t be your own advocate, ask someone that you trust and who knows your health problems. When you are admitted to the hospital or about to receive treatment or a doctor prescribed procedure, the hospital should ask you to fill out a form to add any names who YOU authorize to receive access to your condition. That means, if those people you add to the list call to the hospital or come to your hospital room inquiring about your condition, the staff can give those people your status. There are other benefits to listing these trusted family or friends to this list. If you are too tired or too ill to talk with the doctor, these people that you’ve listed can talk with the doctor or nurses. However, the patient is the only one who can request pain medicine or a sleeping pill (if it is on the patient’s chart ordered by the attending physician).

Many of the things listed above also pertain to even doctor appointment visits. Write notes, list the questions that you and/or family have. It’s so important that you take charge of your health. Living on oxygen can be scary but it doesn’t have to be if you are informed and in charge of your health. If you are a person (like me!) who doesn’t remember everything the doctor says, take someone with you. I take my  husband. For one thing, his memory is like an elephant’s and another thing, I need him to wheel me around in a wheelchair for the longer doctor appointments. I’ve finally admitted to myself that I need the wheelchair and you know what??? I last SOOOO much longer for using it. We’re able to get out after the doctor appointment and do some fun things. We go for lunch as a reward! I’m big about the Reward System. Do something you don’t want to do, like a doctor appointment or a Heart Catherization (yuck!) and get rewarded with some activity that’s fun or even treat myself to ice cream! YUM!

I know life can be difficult and adding some rewards to my life for doing some of the difficult things that I normally do NOT want to do, makes everything a little bit brighter. Don’t you think?? Who else uses the Reward System?? Let me know what you do???

Why I Need Oxygen

I’m sure ya’ll are wondering WHY I have to use oxygen at such a young age. Well, first let me say, when I was 17 years old, I started using oxygen at night only at 1 liter/minute. This was because I would have blackouts throughout the daytime and fall asleep during the classes of my senior year of schooling. I was always tired. I woke up every morning with a severe headache that went away after being up out of bed for about 15 minutes. Though, running to the bathroom having to dry heave every morning sucked! No one, at this time, knew why this was happening.

I’ll start at the beginning of my life and tell you what health problems I was born with to help you better understand why my lungs & heart need the extra help of oxygen. Here’s the majority of my problems:

  • Born with 2 holes in my heart (Atrial Septal Defect -ASD, Ventricular Septal Defect – VSD)
  • Pulmonary hypertention
  • Scoliosis – severe, but have ONE Harrington Rod. The scoliosis deformed my rib cage to the point that leaves less room for my lungs to expand when I breathe. I wore a Milwaukee Back Brace for 11 yrs as a toddler up to my teenage years.
  • Born with only one kidney
  • Born with no left ovary and no uterus (so, no kids)
  • Lung volume is 24% of a person my age, weight, & gender and declining…

With all of this, I also inherited my mother’s migraines which I get every month and started when I was aproximately 17/18 years old. Since I have serious health problems, I can’t take heavy pain medicine or imitrex/maxalt. Now I use oxygen at 5 liters/minute. It’s a large amount, especially for someone who is still able to get out and about. I try to lead as close to normal of a life as I can. I think that’s what helps keep me alive so far.

I know this all may sound dreadful but I’ve survived it. So, ask your questions. I’ve even been stopped by people everywhere to ask about what kind of oxygen I use or even the tacky question: “What’s wrong with you?” I always cringe internally when I’m asked that last one but I always answer. There are so many people who have friends or loved ones who are using or about to start using oxygen and they need help with information on how to get what I have. So, post your questions! Just please be patient because I review every post before they appear on my blog to help prevent spam.

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