Tag Archives: gratitude

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!

Same ole same ole

Same ole story my back STILL hasn’t fused and no one knows why! I am going to have a CT scan done at the end of the month to figure out how much bone has grown, but for a fusion that should have completed in 6 months and it’s been 24 months (almost 25 months) to say I’m disappointed would be a little bit of an understatement. I think the best part now is that we have to watch for metal fatigue…yes that means we have to watch to make sure the metal that was implanted last year doesn’t break. Oh joy! As if I don’t have enough on my plate let me worry about if they are going to need a soldering iron too….

I will be seeing the hematologist soon and two things will happen at that appointment a) we will discuss removal of the IVC filter because everyone is pretty confident I am not going to have some massive deadly blood clot and b) genetic testing to see which genetic clotting disorder I possibly have. Which I am almost coming up to my 1 year anniversary of my first massive deadly all the doctors told me I should be 6 feet in the ground date so the fact that I’m still walking and talking is a HUGE plus! I mean I rather enjoy being a pain in everyone’s BUTT! I said that to one of my doctor’s recently and all he could do was laugh and shake his head. No other response but laughter….I think that’s a good sign…right?

Everyone is happy I survived especially me! Last night someone called me by my deceased sister’s name and I corrected them. They looked at me and apologized and I was teasing them about that if I was her we would really have a problem because I know it’s getting close to Halloween…but we’re not THAT close yet! Then I said if they wanted to go pay her a visit she has a lovely view of the river! The person laughed and said it was good to know I hadn’t lost my sense of humor (they had not seen me recently, and knew I had been having some serious medical issues).

I still think we need to start a betting pool on if my neck is going to fuse before my back! I mean the back has a 2 year lead on my neck, but at the rate it is going, my neck might actually fuse first! We could do a 50/50 split and the other 50 could go towards my medical bills! (I am of course just kidding!) It will be interesting to see which heals first my neck or my back, in some ways I think my neck will heal first because I am skinnier, and I think my overall health is better right now. Sure I am on the blood thinners, but I think the difference in the weight will make a huge difference in the outcome (as much as I hate to say it).

Which speaking of weight yesterday I put on a women’s XL shirt for the first time in years, and I was super excited. I am really working hard at taking off the excess pounds slowly and healthy. I am seeing the improvements, and I also know from doing all the physical therapy that I am also building up the muscle mass as well so I am not just losing the weight I am also building up muscle which will be important for the long term!

Crazy

Why be normal? I mean normal is overrated right? This week has been a lot of crazy feelings and wanting to jump through the phone. There has been a lot of turmoil from one person not doing what they said they were going to do 3 weeks ago and it blew up in my face this week. So I spent the majority of this week scrambling to try and get it fixed.

Of course on the upside of my week Mom took me clothes shopping last week and I got to wear shirts that actually fit and that made me feel good. I have been losing so much weight that the clothes that I currently own are getting bigger and bigger on me. Mom told me it was time to get some shirts that fit so we can start donating the biggest clothes again. I had already dumped my closet of one size and soon I will be ready to do another dump. I am down about 120lbs. I am feeling proud of my accomplishment. I am over halfway to my goal weight that was recently given to me by my doctor.

I just wish my pain levels would go down, even a little! That first year the stupid doctor who will not be named blamed my weight for my pain, well guess what doc? I’m a lot lighter and I am still in pain. It’s also fall which means the temperatures are going to start dropping and while I welcome the cooler temperatures I remember how my hardware didn’t like the cold last year!

I am working hard in physical therapy to build up my muscles as I continue to lose the weight so I know that I have a healthy body. I am eating healthier, drinking lots of water and taking care of me. Next month we are going to look into doing the genetic testing for blood clots and hopefully find out if I have a genetic disposition for blood clots which several of my doctors and myself believe I do. While that’s not the best thing in the world I would rather know for sure than guess. Having a massive blood clot was one of the scariest moments in my life and I just want to know if that could happen again. Of course just because I have a disorder doesn’t mean it would happen again, it just means there is the possibility. Also knowing we can take different precautions so the likelihood of a repeat is less.

When you have so many major medical problems its about knowledge and prevention. You come to understand that things in life are uncertain and you do your best to prevent what you know could happen. You don’t stop living your life, you just make subtle changes to try and prevent things. I stopped eating high vitamin K foods while I’m on the blood thinners because it makes life easier right now. Once I’m off blood thinners I probably will be more aware of how I eat high vitamin K foods knowing they thicken the blood.

Life is short. This morning we were laughing and giggle and I was thinking about how 3 years ago we were getting ready to be married. Now wifey is stuck with me and has stood by my side through all this stuff. She’s a good egg. I’m blessed. We have a good life. It’s crazy, it’s silly and it’s full of laughs.

NAPS!

Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!

I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.

I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!

Gratitude

When was the last time you stopped and made a list of 5 things you were grateful for? So often in the hustle and bustle of our day we forget about all our blessings we have, we are surrounded by gifts from God. I know especially on bad days we can get distracted from our attitude of gratitude really easily and focus on all the negative but those are the days we need to really stop and think of 5 things we are grateful for the most!

I know that with my surgery I have been really pre-occupied with everything surgery for the last couple of months and my wifey has definitely felt my stress. I knew my surgery was going to go well, I had no doubts about that part of it, but I was still stressed over the details. I am a very detail oriented person and I like to have all the ducks in a row and when one duck is not in that row I get out of sorts.

So I challenge everyone to try this week and take a few minutes to list 5 things you are grateful for everyday. Keep that attitude of gratitude alive and remember that life is short and you are too blessed to be stressed!

Tooblessed

Internal clock…we need an intervention!

Okay so I’ve never been a fan of Daylight Savings Time…especially in the SPRING, I mean seriously who was sitting under an apple tree and thought we should all lose an hour of sleep? THAT’S A BRILLIANT IDEA!! I think God should have made an apple fall and hit the nut-job on the head and given them 5 minutes of amnesia and made the whole idea of Daylight Savings Time VANISH!! But seriously why do we feel like this is a good idea? Twice a year we screw with our internal clocks?

So my internal clock decide to wake me up at the normal 7am time..well 7am internal clock time which was 8am now. I just shook my head and got up because I decided that until I have an intervention with my internal clock I’m going to lose! I mean my brain is just going to get me up at 7am it’s time every day and I just need to suck it up. The sooner I accept that I am powerless over my internal clock the sooner I can face it.

I think about all those years that I was definitely NOT a morning person and now I am the chippy morning person  person awake at 7am, and making breakfast for my wife. Whatever happened to the girl who slept in until 9am on the weekends? Definitely not here anymore! The pain I feel wakes me up 7am on the dot, if I wake up later I see it as a blessing. I mean if I am waking up later than 8am I am singing like Maria from “Sound of Music” I mean really woot! I got to sleep in! Most kids get up early on Christmas morning to sneak down to see what is in their stocking, peek at their gifts, NOT ME! I would be snug in my bed, Mom did let me sleep in SOME, but she would let my 2 sisters wake me up at 8am, and then when my brother came along, the 3 of them would wake me up at 8am to open presents. When I would complain Mom would tell me I had a lifetime to sleep in..well apparently my internal clock was plotting against me alll the way back then! See it was waiting in the bushes like a lion waiting for its unsuspecting prey. It made me think I had all the time in the world to sleep in, but NO!

Now as an adult I get to wake up at 7am. Thank you internal clock..I hate you!