Tag Archives: stress

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.

 

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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!

Who’s afraid of stress?

Sickthisoften

So this is going to be a LONG week for me of appointments which I dislike because I prefer to have down time when I can. In the shower I was thinking about my week and the appointments, I couldn’t remember one. I’m thinking and thinking and it just wouldn’t come to me and it’s frustrating because I KNOW I HAVE ONE MORE! So I get out of the shower, get dressed the whole nine yards and look at my phone and it’s DUH!

So the answer becomes what do you do when you are sick/have a chronic illness/multiple chronic illnesses and have a busy week? REST WHEN YOU CAN! I have been taking a nap every chance I can get! Yesterday I took a 2 hour nap and it was GLORIOUS! I think the wifey was surprised because I have not taken a long nap like that in quite some time, but hey I was dead to the world sleeping and enjoying it, so I SLEPT! I have also been making sure to go to bed on time, waking up when my body wakes up which internal clock and I are on the outs…5:30am is way to early, but that’s what I am getting right now…and making sure to do my allowed amount of exercise daily. I am doing my physical therapy exercises as well.

We have switched from the knees to the back so I am incorporating the back exercises back into my routine more often too (I never stopped doing the core/back exercises, but now they are getting done more frequently again). Still working on the knees. Life is good. I am also doing my morning devotion, making sure to take some time out each moment to try and quiet myself which is hard right now because I am so busy.

Sometimes it’s hard to just take a moment and remember to just breathe. Just relax and be in the moment. Shut out everything that is going on. It’s good. Take just a moment and breathe. Take just a moment for yourself. You can do this, you are worth it. Just a few minutes each moment.

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.