Tag Archives: pain

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!

Are your listening ears on?

One of my biggest pet peeves is when a doctor or other medical professional is not listening to me. I know time is limited and I do my best to give you the pertinent information to you, so you need to listen to me. Last year a doctor did not run a blood test on me and missed a major diagnosis. I got really sick because the doctor didn’t listen. So when I had this one guy not listen and thought it was cute that I kept harping that he wasn’t listening, I laid down the law last week. I told him about the major diagnosis that was missed and how serious it was. I explained that he thinks its cute that I harp that he doesn’t listen, but for me it could have been a difference between life and death and I’m not exaggerating.

So his boss called me a ball buster because I was giving him a hard time yet again, and I owned it! Yes, I will give you a hard time yet again! Plus his boss was who I am there to see anyhow. I know that I have a LENGTHY medical file/history so I try to keep it as short as possible which isn’t always easy. I really do try to keep things on point, but unfortunately with me one thing is connected to another.

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.

Emotions, Post Surgery and Restlessness

Last year I had my low back fused, and then 1 month to the day I had a saddle pulmonary embolism that according to the doctors should have killed me. So this year when I had my neck fused I’ll be honest the first 30 days I was holding my breath some. We did the blood thinner shots right after surgery, we did the IVC filter and I am back on blood thinners until the filter comes out probably in October. All that being said, I still held by breath until we hit that 30 day mark and I finally felt like I could breath again.

This post surgery recovery seems to be going more smoothly, and I don’t know if its because it’s so much higher that it has not limited my mobility in the same way that the low back did, or if it’s because this is my 4th major surgery in 2 years so I’m just so used to it that I’m a pro now. In all honesty…it’s probably a combination of the two. I never thought I would become a pro at having major surgeries and it’s not resume material, but you roll with the punches, and keep a good sense of humor about life! I know I haven’t posted in almost two weeks which is unusual for me, and I think I wrote six draft posts and trashed all of them.

I just have been nervous the closer we got to that thirty day mark, a bit restless because we were getting to that thirty day mark and no matter how much you tell yourself this time will be different there is always that small voice in the back of your head to remind you of last time. Every morning I would pass the box of empty shots and think to myself this time WAS different. We learned a very valuable lesson and you ARE fine.

It’s hard when you have had that kind of experience and then you have to turn around and in less than a year put yourself in almost the same circumstances that you were in when you had medical professionals tell you that you should be dead. I am the first one to tell you I am very glad to be alive. I know I am blessed beyond words to be alive. The more people that hear my story the more I realize how blessed I am, we have met several people over this last year who have lost loved ones to saddle pulmonary embolisms. They are no joke. I thank God everyday that I am alive.

I am coming up to the 1 year mark for my 2nd and 3rd surgeries (they were done on the same day) and I think that is why I am so restless. I know that was the event that started the dominoes falling. I know a lot more now then I knew then and we learned from everything that happened. I have a really weird body!

Hopefully with more testing we’ll get some answers on what is going on and why stuff keeps happening. I think we’re headed in the right direction and then maybe I won’t think my body is so weird, it will just be my personality!

Finding Zen

So often the hardest part about being chronically ill is finding your zen. You spend a lot of time waiting for the “other shoe to drop.” You either have things going really well and you are waiting for something to fall apart or everything is falling apart and you are waiting for what else could possibly go wrong. The real trick is to find a neutral space in all the medical chaos you often find yourself in and just try to stay in a peaceful mindset.

It’s not easy and I am no expert on this one! I often find myself drifting into the chaotic world of what could possible go wrong next! I really have found humor to be a good outlet for myself because if I can keep laughing I find I stress less. Notice I said less, not that I don’t stress, because I am human, but I stress less. I try to explain how I feel to the doctors but even after so many years of the pains it’s hard sometimes to explain what is going on. It’s hard to explain how I feel, I get tripped up over my own thoughts and words and the more I get tripped up the more anxious I get. The more anxious I get the more I get tripped up and the cycle continues.

I think for me I have learned to just pause, take a minute to collect my thoughts and start over. I try to take a deep breathe and collect my thoughts and realize that I don’t have to be perfect. I just have to explain the best I can. No one can feel the pain like I can so I have to be my own advocate but if I’m not telling them the whole truth they can’t help me. So sometimes I just have to let them know I’m overwhelmed. Let them know how I’m feeling and then go on from there.

No one is asking you to be superman or superwoman. They are just asking you to be you! They are asking you to be truthful and honest and help them help you. Learning to be gentle with yourself is hard, but worth it.