Tag Archives: chronic illness

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?

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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….

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!

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.