Monthly Archives: October 2016

Let me sing you a song!

So talking in my sleep has been going on since I was a child. I would get embarrassed at summer camp because I would talk in my sleep and the other kids would tease me. I have always talked in my sleep, I can’t help it. If I could I would, but you get what you get with me! I have some funny stories from college years when I would talk in my sleep. I scared the crap out of one of my roommates when I whispered her name in my sleep, she wakes up asks me what I need/want, I whisper her name again she asks me again what I want, I shout her name, she shouts back and I start snoring….needless to say I was asleep the entire time.

So I am used to people complaining about my talking while slumbering. I shrug and apologize. I have had the sleep tests done and was diagnosed with sleep apnea. I wear a cpap mask and use a cpap machine every night, and even with that I will still talk on occasion. Well in the last couple of weeks apparently I needed to raise the bar…I have decided that talking in my sleep is not enough. I need to start singing in my sleep. My poor wifey tells me the other morning that I was singing VERY LOUDLY to her in my sleep. Of course I laugh at her and ask if I was at least singing in tune, this does not amuse her. She said she kept gently elbowing me to get me to stop which would quiet my concert for a bit, but then I would start again much to her dismay.

Thankfully she understands that I was not doing this on purpose and she is very loving and did not try to smoother me in my sleep…of course with the cpap mask she would have had to remove it first because placing a pillow over the mask would not have done much good. So we have no idea why I have changed my normal routine of just talking in my sleep to now singing in my sleep, but I find it hilarious, my wife not so much. Of course I’m sleeping through it, she is waking up unable to sleep so I can see why this would be troublesome.

My sleep disorder doctor does believe there is something more going on and we are working on getting more testing done, but we hit a roadblock with the insurance company. So until we can get them to approve the testing he wants done the wifey is going to have to deal with my singing in my sleep. Of course since I know that I am wearing the mask I am making sure to sing loud enough that she can enjoy it, which I think is very kind! I mean if I am going to put on a personal concert at 2am I think she should be able to enjoy every second of it…don’t you agree?

It’s in the blood work…..

So I got my blood drawn this week for genetic testing for genetic clotting disorders. My doctors believe I have Factor V Leiden. I was tested for several others, but that is the one that they believe I have. I am the one who pushed to be tested. I know this might sound strange to some people, but I am at this point where I just want to know.

Last year’s events changed our lives forever. There is nothing we can do to go back in time and change what happened. My clotting risk went up as soon as I had that saddle pulmonary embolism. I have been working on reducing my risk for a 2nd clot, but I want to know if there is a possible genetic factor we need to be aware of when we are making medical decisions.

Every medical decision is about pros and cons, weighing the positive outcomes against the risks. We know that when it comes to making medical decisions for me we roll the dice. We don’t know what will happen because I’ve had complications, I’ve had unfavorable outcomes, but I’m here. I am alive and walking and here. I take each day with the Grace of God and the joy in my heart. I know how lucky I am to smell the roses and see the sun rise and the sun set. I know how important it is to tell the people around you that you love them. You have today. You have no idea what tomorrow will bring so stop thinking about it. Live in today, live in the present.

The morning of my massive blood clot I made the wifey breakfast in bed and I have not done that in the last year. There is a psychological reason. For a long time we could not bring ourselves to have ham and eggs (which is what I made that morning) because we were instantly brought back to that morning and the fear we felt. Wifey asked if now that it’s been a year if she can have breakfast in bed again..I told her I’d think about it. I honestly hadn’t realized it. It was just something I had stopped doing subconsciously.

There are things in life we can control and there are things we cannot. I cannot control my genetics. They were born with me. There are other things that I can control like my diet the foods that I eat, and the amount of sunlight that I get each day, etc. I am focused on controlling what I can and accepting life on life’s terms. So no matter what the tests results show I am at peace. Nothing has changed inside of me. I am the same person I was yesterday, and I will continue to be the same person tomorrow. This just gives us one more piece of that 1,000 piece puzzle….well with me maybe it’s 5,000….

Before and After

When you have any major life event there is a before and after. After awhile you can’t remember what life was really like before..you have this rose colored glasses view of your life. You forget how hard life was, you forget the problems you had because life is hard now, life is different now and you long for your before life. I make a lot of jokes about my injuries because it helps me deal with the fact that I will never have my old life back. I will always log roll to get out of bed in the morning. I will always have to watch the placement of my feet when I walk. I will always be careful about blood clots for the rest of my life.

When I was young I was in a major car accident, I survived. I thought that was the worse thing that could ever happen to me. I will be celebrating my wedding anniversary. I remember my wedding day and how excited I was and now I forget what life was like before I was married. You get used to what life is like now.

I am used to going to the doctor all the time, physical therapy every week. Home exercises, working to strengthen the muscles that have weakened. I was talking to one of the doctors this week about permanent nerve damage because in my thigh I have permanent nerve damage and they are concerned that I might also have permanent nerve damage in my arms. There is also a possibility there is permanent nerve damage in my neck, but we think it’s only temporary nerve damage! It’s sad when you get excited about temporary nerve damage.

But for me there will always be a before and after for me. There is a life before all these surgeries and the blood clot, a life that I don’t remember anymore. A life that I barely remember anymore. Life without daily pains, wearing braces, watching where I move, how I move, and what I do. I can’t just do what I want anymore.

Who’s not ready for fall?

I used to love the changing of the leaves, the cooler temperatures. I mean there is some real beauty watching the leaves cascade down…now I see them and I think fall hazard..they get wet, I’m going to slip! I’m constantly watching for branches, leaves, pine cones, acorns, etc. Everything has now become this natural obstacle course that I didn’t train for! I mean who thought I looked like I wanted to compete in some Ironman? I did not sign up for this! I mean I can barely walk to the car on a good day! (Okay maaybe that’s a bit of an exaggeration, but there have been days that I have tripped over my own two feet!)

So the wifey is planning on going roller skating this week and I was telling the physical therapist this and he looks at me and I go no I am not going with her, and he gives this huge like HUGE sigh of relief. I laugh and go hey I know my limitations I barely walk without hurting myself! He laughed and asked if I was always this accident prone and I go NO! I actually did several sports as a child! Gymnastics, soccer and swimming to be exact! He was a bit surprised I think. I’ve just become the world’s biggest klutz as an adult!

So with fall comes the cooler temperatures which means the hardware in my back is starting to hurt. This is the part of the year I dislike. I also have lost the weight so I don’t have as much insulation! Actually that part is a good thing, and I’m glad for that part! I am pulling out all my sweaters and hoodies which are now about 3 sizes too big for me, but they are sweaters and hoodies and it doesn’t really matter if they are 3 sizes too big for me. We are in the process of buying me a new winter coat however because that is 2 sizes too big for me and it looks rather ridiculous, so we’re going to fix that situation. I have jackets that are the right size, or at least only a size too big, but the winter coat definitely need an upgrade.

So I am going to sit over here sipping on hot cocoa and wearing my hoodies and sitting under my blanket that I pulled out of storage because that’s what I do when it starts to get cold again, I bundle up because I’m always cold! They laugh at physical therapy because I usually have about three layers on and I have to undress before my appointments because I only need one layer to do my exercises. But hey I admit I am cold, I take no shame in that!

Yes I’ll have the fries with that

I’ve been working on losing weight for the last 2 years and I’ve lost 120lbs. I have done it through all the surgeries, the blood clot the exercise limitations, etc. I still will eat fries, I still eat dessert, but I eat things in moderation. I think realizing that you can eat healthy and still have your fries, chips, chocolate cake or ice cream is what keeps you going. I am hoping to be at my goal weight by the end of 2018 (who knows maybe I’ll get there sooner!) The stronger I become the faster I may be able to lose the weight, we’ll see. Right now I take life one day at a time. I live life one day at a time.

Today I went shopping for a few long sleeved items and we were hoping to find a couple pairs of workout pants for physical therapy, and I tried on a smaller size in jeans. They fit and I didn’t even have to suck my tummy in before buttoning them! Actually I looked in the mirror and grinned at how well they fit! I am getting there slowly but surely. Over the weekend multiple people kept commenting on my weight loss and I thanked them. It feels nice to have people notice.

It also feels nice to be going down clothing sizes as rapidly as I am right now. Of course it doesn’t feel so nice for my Mom’s wallet! Of course we are only getting a few items in each size because every time she turns around I am in the next size down, which she’s not complaining about. We just know that it doesn’t make sense to buy a bunch of clothes in a single size until I am at my goal weight. Then we’ll buy more than a few shirts and a few pairs of pants.

When your whole life revolves around illness

So wifey and I were discussing that we use all my major medical events (surgeries, saddle pulmonary embolism, major tests, etc) as a timeline for our life. We then remember everything else have done around those events. I looked at her with squinted eyes and said that’s sort of sad….I mean it is what it is, but to think how much of our lives revolve around illness and surgeries is depressing!

I am optimistic that the future will not be like this. I cannot go back and change the past, it is what it is, but the future I am hopeful will not be like this. However I also know that I have several chronic conditions and the future may also entail some more surgeries (I am hoping some space between them and not so back to back), and some more medical procedures, but it’s the attitude you take with life that predicts the outcome.

We try really hard to be happy, joyous and free. That is not an easy task around here at times. I get grumpy, I am often sore and in pain from the time I wake to the time I go to bed. Everything hurts, sitting hurts, standing hurts, lying down hurts. I have headaches, backaches, my hip hurts, etc. I can only do so much for the pain, but I am trying. I try to remember each day to be grateful and I think of five things that I am grateful for even if they might be small, but five things. Put myself in a more positive mind set and start my day in the right mind frame and things seem to go better.

I also sometimes in the middle of the day will do the same thing because I’m stressed out because of this or that and I need to re-focus my day. I might look up silly pictures, or jokes or stories to help because I know it’s okay that I hurt but I don’t want to get stuck in that grumpy mood. I don’t want to get stuck in the everything sucks attitude. I try really hard to take a deep breath and focus on the positive which some days is definitely easier than others.

As my neck has been healing the headaches are starting to come back which is highly annoying, but I have been taking a deep breath and massaging the base of my skull to release some of the pressure. I have gotten some new physical therapy exercises to do at home to release some of the tension in my neck and shoulders which seems to be helping as well. I am glad to be getting more home exercises so I have more to choose from, I have been switching between the back, knees and neck. I really feel like I need to make up a song similar to “Head, Shoulder, Knees and Toes” for my exercises…it might happen.

I just keep reminding myself that 10 years from now I will look back and this will feel like a short time in my life, a small blip on the radar, right now it feels like forever, but when you look back it won’t. So often when we are going through something it feels like a lifetime because we don’t know when it will end, but then we get to the end and we realize it wasn’t as bad as we thought it was going to be. Well in my case I almost died and outside of dying I don’t think you can get any worse..but you get my drift! So the moral of the story is when you are going through a rough time try to look for the positives, they are in there, somewhere. They might be hidden, they might be small, but they are in there. It’s okay to cry, it’s okay to get depressed, but don’t get stuck. Realize that there is an end and you will get through it. Even if the condition is a chronic illness you will learn how to manage it, you will be stronger and better equipped to manage it, and you will be a warrior.

 

Almost a year ago!

So almost a year ago is when I had doctors telling me if you get out of this bed YOU’LL DIE! Normally they say those types of things for dramatic effect, in my case they were saying them because it was true. I have never in my life been that sick. I came pretty close one other time when I had gallstones and developed pancreatitis, but last year when I had a saddle pulmonary embolism that was definitely a brush with death I wish I had not had! There is nothing scarier than looking multiple medical professionals in the eyes and seeing sadness staring back at you.

I said this to my wife, the nurses tried to hide it, but every changing of the guard they would come into my room and as soon as they found out I was their saddle pulmonary embolism patient you would see it in their face. That brief moment before they could plaster on a fake smile that shock of here was a young patient who was given an almost death sentence. I still get doctors who will review my medical records and go this can’t be right and I’ll go yes I’ve had a saddle pulmonary embolism. They just look up at me almost startled. I just smile-the biggest cheesiest smile I can for them.

It’s unusual for a patient to have a saddle pulmonary embolism I have been told that about 1% of the population get saddle pulmonary embolisms and I am lucky to be in that 1%. The thing about blood clots is they don’t discriminate based on age. In my case we feel like all the back surgeries aggravated an underlying genetic predisposition to blood clots (to which I am being genetically tested soon), but anyone can get a blood clot. So it’s important for everyone to realize that no matter how old you are, you can get a blood clot!

The issue with my blood clot which did start out as a DVT (Deep Vein Thrombosis) is that my leg did not swell any! So I keep checking for my leg to swell, and I do not remember it cramping either. My symptoms were I was having chest pains a couple days prior which I wrote off as getting a possible upper respiratory infection due to change in weather, then two days before I was hospitalized my pulse was going through the roof which I took my blood pressure and my blood pressure was normal. The day before I collapsed I had a bad cough  and I was coughing up blood that morning, but I thought I was having an asthma attack to be honest, and we went to the ER. I was diagnosed with pneumonia. I was given antibiotics and cough syrup and told to rest.

Had the doctor done a D-dimer blood test he may have seen that I had a blood clot, since he never ran the blood test we have no idea if I would have been diagnosed a day earlier or not. However I had the classic symptoms of a Pulmonary Embolism and since I had just had major surgery the doctor should have done a D-dimer blood test on me just as precaution.

I am blessed. I am glad that soon I will be here another year, and I plan to be here MANY MORE!