Tag Archives: autoimmune disease

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!

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Healing SLOOOWLY

So I’m getting ready for another surgery, and I was talking about the first spinal surgery yesterday with 2 doctors (they work together) and how I am healing REALLY sloooowly from the first surgery. The first surgery was in 2014, and then I had to have the surgery repeated in 2015 because it did not take in 2014. Now since then we have found out that I have an autoimmune disease so that slowed healing, but it should not have slowed it down by this long. We’re actually not sure if I’m totally done healing even YET! I just got new xrays of my back done this week and I’ll find out soon if I am fused finally. My guess from the way they are talking, I am NOT. Which means that it’s been almost a YEAR since the surgery in 2015, it’s been almost 2 years since the surgery in 2014 and I’m STILL not healed…something is definitely WRONG.

So the one doctor asked the other doctor about if I had been diagnosed with pseudo neuropathic joint disease and the doctor said they were waiting to look at the images. I would have had the images for them, BUT there was an issue putting the images on a disc and I didn’t get it in time for my appointment. So what I find interesting with this is that in 2015 they had to put hardware in my back to keep everything stable because things were not fusing properly, but after reading I think they might be on to something as if I need something else to add to my laundry list of ailments. I have been leaning again which is what is concerning the docs. Of course that is an old habit from before the first surgery and I am trying really hard not to do that, but old habits die HARD!

I will have the images to the doctor before the next appointment so they can look at them to see how the fusion is looking. I want to know myself to be honest. I’m ready for it to be DONE, but from what they are saying its sounding like its still not healed…(they had the report just not the images). So we shall SEEEEEEEEEE. I just keep on taking life one day at a time. I can tell there has been some shifting in my hips/low back which is what they are working on right now to try and get me to correct my posture again. The pain just gets so bad…who wants to stand up straight when it HURTS?

 

Red hot…face…

So in addition to all the pain my face is red hot…or at least feels like it’s burning up. Now wifey seems to disagree with me on this, but I feel like my face is burning up, but I do agree that to the touch it does not feel as hot as I feel internally…if that makes sense. My temperature does not register this, it actually has been lower than normal. My cheeks have been redder than normal, so I think you can see it, but maybe it’s just me.

I am just finishing the antibiotics for the cyst that I have. My knees are not cooperating (I know what else is new on that front). My neck has really been bothering me, even more than normal I see the doctor in 2 weeks to schedule surgery. My back is bothering me and today I have a migraine. Oh yeah I am just loving life today!

My neighbor came over to chat and commented that I looked tired, and I know I do, I feel tired. I have been randomly falling asleep at the computer again, I will lose time which is always disconcerting. I think this is playing into my neck bothering me more than normal. I have found myself in odd angles which I’m sure isn’t healthy for my neck. I have checked my CPAP read outs every morning and most mornings they are decent and I’m sure that most sleep apnea patients would be pleased with mine, but something is just not right. I don’t know what is going on with me, but something is wrong.

I go in for thyroid re-check and potassium re-check tomorrow and maybe something in the blood work will help clue the doctors in. I am so tired of feeling crappy and hurting. I feel like I am losing a battle I didn’t sign up to fight. Of course that is the joy of having an autoimmune disease, you are literally battling yourself. Your body has decided to go to war with itself and destroy some piece of itself and you are stuck on both sides.