Tag Archives: spinal fusion

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.

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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.

I love YOU

Can you look yourself in the mirror and say “I love YOU!” and then REALLY mean it? Have you ever really even thought about it? I mean we turn to our children, our spouse, our sisters, our brothers, our parents, aunts, uncles, grandparents, friends, etc and say “I love you” all the time and sincerely mean it. What happens when you look in the mirror at yourself? Can you look at yourself and really love the person staring back at you?

I recently came across a quote I wrote about scars that said “A scar is a tattoo with a better story.” Now this was written before my 4 spinal surgeries and I had to chuckle because all of my scars that I have now do have good stories attached to them an I do still feel that way, but BOY I had no idea when I wrote that 6 years ago what my life had planned for me! However I’m not ashamed of my scars. I know they each come with a story that is better than my tattoo. Now my tattoo has a good story too, but somehow my scars from all these surgeries seem to top my tattoo story now.

Someone recently asked me if with all the scars from all the surgeries if I would be in a one piece bathing suit now, and I go NO! I’d wear a bikini I’m not SCARED! I’m working too hard to lose all this weight to hide in a one piece! They laughed. Being comfortable in your own body is important. We have too many outsiders telling us we need to look like some airbrushed model, but the truth is we need to love our self.

There is nothing wrong with self improvement. I am working on losing weight so I am at a healthier weight, but I can still love myself. I do not need to hate myself in this moment. I can love myself and still lose weight. I can love myself and understand that the scars tell a story of where I have been, the journey I have been on. We often say we need to remember history so we don’t repeat it, when talking about our own history we need to remember that we don’t have to be stuck in the past.

There are things we might not be proud of, things we might wish didn’t happen, but they are in the past. We can honor those events without being stuck. We can honor ourselves and still seek self improvement. We can love ourselves and not be stuck. We can look in the mirror and say “I love you” and MEAN IT! I often use humor as a way to deflect my emotions, but I do love me. I know I may not have the easiest life, but I am proud of where I am. I know I have dealt with some really hard medical decisions, but I have overcome them and I am learning how to navigate.

I can look in the mirror and love who I am. I can look at my scars and not be ashamed. I have a tale to tell and not be ashamed of the tale. I am continuing to move forward and I want to remember that each time things don’t go the way I expect it’s just another plot twist! So today go look in the mirror and say “I love you!” The trick is to keep doing that until you really mean it!

heart

Smiling through the pain

How can you still be smiling? How can anyone possibly smile when they are in that much pain? Maybe you aren’t really in as much pain as you say you are! Oh trust and believe I am! When your body is basically breaking down you have two choices stay on the pity pot or jump off and try to make the best of a crappy situation. I choose the latter. Trust me waking up every morning and putting knee braces on is not my first choice. Waking up and putting on knee braces and switching from a soft neck brace to a hard neck brace is REALLY not my first choice right now, but it is my life. I can either suit up and show up or I can hide and be all poor me. Suiting up and showing up means I can see my niece and hear her giggle and see her zoom around the living room in that dress she pulled out of the dress up box. See my nephew giggle as he tries to steal his sister’s cookie while she’s not looking. Suiting up and showing up means I get to spend time with my brother and talk about why worm holes and Dr. Who actually make perfect sense and why the 10th Doctor is better than the 9th.

Suiting up and showing up means that I ¬†go to physical therapy and do the stupid squats that I hate to make my legs stronger so that maybe I won’t fall next time. Suiting up and showing up means that I get to have dinner with the whole family and laugh about this or that story that I had forgotten about until someone brought it back up from the family archives. Suiting up and showing up means I hear the prognosis and treatment plan from the specialists even when I wish it was better news. Even when I wanted better results.

I know I joke and laugh and smile more than people might expect, but that’s how I deal with the pain. Just because I’m laughing and smiling doesn’t mean I’m pain free it means that I am trying to do everything I can to fight the pain. I get tired easily; much easier than even I want to admit. I just have to honor my limitations and keep working on what I can fix and accept the things I cannot change at this point. It’s a bitter pill to sallow at my age, but I know things could be worse. I am going to keep on moving upwards and onwards! You have to keep a positive attitude or else all the negative will eat you from the inside. You cannot let all the bad things get to you or you will sit on that pity pot until you no longer exist and who wants that? NOT I! I would rather suit up and show up and enjoy life with limitations than miss out on all the joy life brings me!

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