Monthly Archives: June 2016

Advance Directive

Death. It’s not sexy. It’s not funny. No one wants to talk about it. We hide from it. We want to be old and grey. We want to avoid death as long as possible. I get it. We scream and wail when someone young dies. We think why did that happen to them? Why so young! It wasn’t fair! It shouldn’t have happen to them!

My sister died young, she was in a car accident and suffered a lot of injuries and significant brain injuries that we didn’t know about for 2 weeks. We had to remove life support. I would never wish that on anybody. While we as the family knew it was the right choice to remove life support it was still a hard action.

So last year I came close to losing my own life when I developed a saddle pulmonary embolism. I was told over and over again that I should be dead. How lucky I was to be alive. Trust me I know, I’ve now seen the scans (and I think I’m grateful that I didn’t see them until the clots were 100% resolved!!!)

So I have another surgery coming up and everyone is worried about blood clots again (I’m not, but I do understand that I am at high risk). So I told the wifey that I need to fill out the Advance Directive paperwork and sign it and then file it with the hospital before the surgery this year. I am feeling confident that everything will go smoothly. So you are probably thinking so why is she filling out and filing the paperwork?? Last year we came to close to crossing that bridge. I want to sit down and have that paperwork filled out. I want to sit down and discuss with the wifey how long should she keep me on life support. How long should she do this, how long do I want that. How far do I expect her to go to keep me alive. As a couple we have talked about a LOT of things and this is something we have skirted around.

Filling out the paperwork so they have it, so it’s clear what I want is important. I don’t want her to have to guess. I also don’t want her to have to feel like she has to make all those decisions alone. If we sit and I fill out the forms and we discuss all this now she knows how I feel. I realized that I know what she wants if she dies, but I don’t know where I want to be buried, if I want to be buried. Do I want to be cremated? I never really thought about it! Last year I came too close for comfort to the end, I have no plans on getting that close again! I just want to write out my wishes for my family so they know.

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100lbs down, and I can’t believe it!

I am officially down 100lbs right now and I really can’t believe it. I have been working really hard and slow and steady I have been losing weight slow and steady. It has not been easy with all the other health issues. If you had told me 2 years ago that I would be able to lose this much weight I would have doubled over laughing in  your face! I would not have believe it..AT ALL! Of course if you had told me about the myriad of health issues I think I would have raised an eyebrow too, but that’s another story! I mean not many people get a second chance at life.

So I had told myself I was going to get down by the end of June, and I did it! I was about ready to jump up and down on the scale. Which I don’t suggest because a) it’s bad for the scale and b) I can’t because of my knees! I was so happy. I want to continue to lose the weight a little at a time because I know it will be better for my overall health. Going into this next surgery I know being at least 30lbs lighter is going to be a lot better for me. I’m hoping to be 40lbs lighter, we will see!

Take life one day at a time.

The death of me

I think I have mentioned before that I am super allergic to Lysol™ like I go into anaphylaxis allergic. The first time I remember having a serious reaction I was in high school and one of the guys in band sprayed some Lysol™ on some equipment and my eye swelled shut! The next time I had breathing problems and ever since especially with the aerosol varieties I have immediate breathing problems that can get pretty severe. So I use other cleaning products.

That being said I don’t expect people around me to use other cleaning products but my friends are aware of my allergy because it is so severe. My doctors offices are also aware of it because it is so severe. I also had to let my university know because they had cans of it in the bathrooms and people would spray it and one time I had an asthma attack in the middle of class because I used the bathroom and someone sprayed it while I was in the bathroom. Thankfully I was not near the person or else I would have had to go to the hospital that time, it was a close call!

So when someone wants to use Lysol™ I leave. I will not jeopardize my health for it. It’s nothing against the person, I just remove myself. Tonight I was sitting watching a show with my friend and another friend got up and was straightening up. All the sudden I SMELL IT. I smell that all too familiar smell, so I look over to the counter and my enemy sits with the top wide open, so I get up tell my friends good bye and leave.

I get outside and the coughing begins. I coughed and coughed and thought this is why I hate that crap. I did make it the short walk home, and then I made it to the bathroom (I was afraid I would vomit. Often after a violent coughing spell I vomit). I was able to calm down and so far so good, and I am thankful it was just the wipes. The wipes don’t tend to have as bad an effect as the sprays do.

So now I stay up a bit to make sure my lungs are recovered before going to bed because it’s late. At least I had seen the show so I know how it ends.

Stress

When you have a chronic illness stress takes on a life of its own sometimes. It’s not just your stress either- your family members also get stressed. My wife is the most wonderful woman in the world, but I know everyday that my chronic illnesses stress her out. I know my disability stresses her out. We don’t have a normal life because of my chronic illness and disabilities. We try to have as much of a normal life as possible, but everything we do we have to think about logistics. I have a physical disability and while I get around pretty well, stairs can be an issues, steep hills are definitely an issue, and walking long distances is an issue. So we have to think about where we are going how long we are going to be there, will I be able to sit and rest at some point, etc.

It’s always the elephant in the room. Now I’ve been told that I have to wear these knee braces because my knees will not get any better, they will get worse over time how much time is anybody’s guess. I am staying in physical therapy to try and strengthen my knees and legs to hold off more damage, but so often I am not doing anything more than walking across a flat surface and one gives out on me.

Right before every surgery I get more stressed out because I want everything to go as smoothly as possible so I try to make sure everything is perfect. Yes I know this is an unrealistic ideal, but I am at heart a perfectionist and while I am working on letting go and I have made big strides I am a work in progress. So we are getting ready for surgery later in the summer and I am stressing. I am not stressing about the surgery itself. I know that is going to be fine and honestly once I am at the hospital the morning of the surgery I will be calm. It’s all the days BEFORE!

I’m trying to make the last minute doctors appointments to see this specialist and that one. Trying to make sure that these ducks are in a row. Trying to make sure all my medical team are in the loop with what is going to be happening so no one is surprised when I walk into appointments after surgery with a neck collar on. I think I just have one more of those appointments now. I have other appointments, but I think everyone is in the loop!

I am really working hard to try and find some zen and before the surgeries and back problems I did yoga, I swam, I hiked (yes I hiked!), but those just aren’t feasible right now. I am hoping that once everything is fused in my low back that I might be able to do some yoga again that is safe for back health. I really miss yoga. I am working on doing some daily meditations again because I think that is part of the reason I am stressing so much right now is that I don’t have any zen in my life.

Bonito..todo me parece bonito

So when I lived in Spain many years ago I really got into Jarabe De Palo’s music and one of my favorite song’s is “Bonito”. The first line which I made the title of this blog translates to beautiful, everything I see is beautiful. When you keep a positive attitude things seem better even when things are bad. When I was in the hospital with my saddle pulmonary embolism I was really positive and I only cried a few times because I knew I was going to survive. The first five days I was in intensive care the doctors kept telling my family I might not make it. They were not convinced that I would survive. For five days my Mother prayed for me.

Those first five days I don’t remember a whole lot, I slept a lot, I remember I kept telling the doctors to keep me alive! I was told over and over again how close I was to death that if I were to get out of bed I could die, etc. Of course I was so weak that getting out of bed was like the last thing on my to do list! The first time I remember getting out of bed it was like freedom and then I did it and I thought am I sure I want this freedom? I still was hooked up to oxygen, IV and all these monitors so it was quite the feat to get me out of bed! Walking wasn’t that much fun having a huge blood clot sitting on both sides of my lungs!

I met with the hematologist this week to discuss my upcoming surgery and if I should have a IVC filter placed before surgery. He did not make this recommendation lightly. We looked at the pros and cons of filter placement and we both agreed that it would be for the best for me because of my history.

So while I was there I got to see the scans from my blood clot and I have to say I am glad that I know this clot is gone now. I am glad I did not see the scans while it was still sitting in my chest because if I had it probably would have given me a heart attack. The scans were something else! HOWEVER I’m smarter now on what a blood clot feels like, what symptoms I have, and we are doing blood thinners after surgery so all is well. I know that we learned a lot from my experience last year and it was a great teacher going into this next surgery.

Brain don’t fail me now!

So last night was a Strawberry Moon so I was very excited to try and see said Strawberry Moon…well because of the trees I did not get to see said moon. Well I came back inside got re-oriented because any time I look up I get dizzy! Then I got ready for bed. I totally forgot that dinner needed to be put away. So this morning when I got up I went to make the coffee and passed the slow cooker and saw the beautiful leftovers from last night. MAN! So in the trash they went AFTER I got the coffee started because anyone who knows me knows I have to have my cup of joe in the morning! I mean all things are possible with COFFEE!!!!!

I have been having more and more brain fog issues here recently and I can’t decide if the brain fog is worse or the fact that my sleep habits have gotten off has just increased the severity of the fog. Knowing my luck its just a combination of the two. I am seeing another doctor for my pre-surgical consultation this week trying to get all the final details of the plan down.

One step at a time, we’re getting things figured out, life is good. I am so tired this morning. I feel like I could go back to bed, but I have things that need to get done today. I definitely feel a nap today! Last night I kept waking up, I think I just have a lot on my mind right now. I keep trying to remember things so I keep trying to say them over and over again, but then in the middle of the night I’ll wake up with those reminders! So maybe this idea isn’t working so well! OR Maybe it’s working TOO WELL! I guess it depends on how you look at it!

I also have notes written for myself as well because I know I’ll forget if it’s not written down somewhere.

It’s all good. I know I’ll remember or I won’t because that seems to be the way things are running right now!

Knees are crap

So I went to the orthopedic and he basically told me that my knees are crap. I already knew that, but I got confirmation from the guy with the MD behind his name! I have to wear knee braces on both legs from now until FORRREVER!!! *Said in my best movie voice!* It’s good however. The braces keep my legs stable so that is good for my overall health. He wants me to keep up the physical therapy. Which I like the physical therapy.

I am hoping to strengthen my legs up and at least get to the point where I can then strengthen my back too. One step at a time. I have learned that you have to crawl before you can walk again! I was hoping to get rid of the knee braces, but now I have made peace with them and realized they are one with me! When you just accept them and realize that life is good, life is GOOD! I mean seriously life is good.

I am good, life is good. I am happy and working on living the best life I can.

Today I am in pain and I’m trying to distract myself anyways I can. My hips hurt which I know is from my knees, because my knees hurt all the time I tend to stand unevenly which then causes my hips to hurt. I try really hard to be conscious about how I stand, how I walk and how I move because everything matters. Of course I get hurt in the dumbest ways so we’ll see!