5 years. It has been exactly 5 years to the day that I underwent my first surgery, my surgery for MALS. This date is one that I feel I will always remember, because in my mind, this is the date that started a majority of what I deal with today (at least when it comes to my health).
For the past two weeks, I have been receiving notifications from my Timehop and Facebook apps, all of which are posts from 5 years ago when family and friends rallied behind me to let me know they were thinking, praying and waiting for me to get better.
These posts have made me think about the last 5 years, and what I have gone through health-wise, and how it all has led me to where I am today. 5 years ago, we thought the solution to my problems was a surgery to correct MALS. However, I feel like we could not have been more wrong.
For those of you, that read my blog posts all those years ago, you know things have not been easy. For those of you that didn't know about the blog, or know me at the time, here is a quick little recap. After my surgery, in November 2010, I felt relatively great (considering I had just had surgery), three months after surgery the pain came back more excruciating than ever and that is when I was soon diagnosed with a neuropathy, given medicine and soon figured out how to manage the pain. About a year after my surgery, and having my pain under control...the pain came back, I went to the pain management doctor and he wanted to do another surgery to implant a device to help me manage the pain even better. I remember being extremely upset, I wasn't supposed to have another surgery, I kept thinking, the first surgery was supposed to be it. Little did I know how wrong I was. In the end, I ended up having surgery 14 months after my MALS surgery. Turns out my appendix needed to come out, and because of the neuropathy, I was feeling the pain before the tests said the appendix needed to be taken out. Once again, as soon as the surgery was over, I felt great. 13 months after that, my pain came back. Of course, nothing could be found. I was in pain for a little over two months, I was hospitalized for 2 weeks and eventually ended up on liquids only diet...in June 2013, I had my gallbladder out. And once again I felt better a few months after surgery.
You would think things could only get better from there. In my mind they did, it is just that when it comes my health, I learned to never take a bad day for granted. I couldn't let myself, simply because at this point, I always felt like I am waiting for the other shoe to drop when I start to notice a slight difference in my pain. I had learned to not let my health get the better of me with my first surgery. The good news is, I have not had a surgery since 2013. For most people, that is an easy thing to do...go two years without a surgery...for me though, that is quite the accomplishment. And, when it happened, I was so happy to be able to say that.
At the same time, I will always have to deal with chronic pain. The thing about chronic pain is that you are always in pain. It is very rare that you have a day where you have absolutely NO pain at all. Like I said earlier, 5 years is a long time, it is enough time that for the most part I have figured out my triggers and how to manage the pain so I can actually have a life. I have learned to take the good days with the bad because I am one of the lucky people, when it comes to other girls in my MALS support group. There are some people who still don't seem to have the ability to have a normal diet 3+ years post surgery. So, I try really hard not to complain too much. However, there are days, that I will complain. Usually the pain gets unbearable when a new issue is happening and I cannot get the pain back under control until the doctors have diagnosed me with whatever new medical condition is causing havoc on my body. But still, I try really hard to watch how much I complain. I have talked about this with my mom and a close friend from my support group, but as much as this has been hard for me to cope with for the past 5 years, it is also hard for those around me to watch me go through it and not be able to help. Which really helps me put things in perspective. It has also helped me put things in perspective when someone else has a problem. The thing is, people mean well when they say they understand why you are upset about being sick, and I know they mean the best when they ask how you are doing; but when it comes down to it, people get tired of hearing you constantly say you do not feel well. And to be honest, no one can fully understand that you get tired of feeling bad too. No one wishes to live with chronic pain, but the fact of the matter is, people do. Those people who do, have to learn to be understanding to those people who are just trying to be supportive of them. That is one thing that has been a lesson I have learned and I feel I am still perfecting. To be honest, there are days, when I don't want to be around anyone and yet, I want someone around to help me out. Obviously, I cannot have it both ways. But I know me, and I get cranky and upset when I don't feel well because I don't want to be going through pain anymore than the next person. Some days, I hate to say, I let my mood from dealing with pain get the better of me. I am human, and I am working on it. Simple as that.
While I would never want anyone to experience all of the health drama that I have gone through, my health has taught me two very valuable lessons. I have learned not to take each day for granted. When I was recovering from my first surgery, I was so depressed I didn't want to do anything. I had to learn to force myself out of bed. I learned that pain is something that I would have to deal with for the rest of my life, so I needed to start dealing with it and stop wallowing in the fact that I was going through it. Which brings me to my second valuable lesson, I have learned to be more understanding of people's feelings. After all, I want them to be understanding of mine, and in a respectable way. What I mean is, when I talk about dealing with something, I am not always that fond of people that say, well you should be optimistic, why are you letting this keep you down, or even worse is, when someone tells me that they understand. It is not that I do not appreciate people being sympathetic towards me when I am having a bad day, but people cannot begin to understand what I deal with when I do have a bad day. Just like I cannot always understand what they have gone through in their life.
Since my first surgery in November 2010, I have been diagnosed with: a neuropathy across my stomach and one beginning in my feet, Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Regional Pain Syndrome Type II. I recently was in the hospital and spent the last 6 weeks in St. Louis with my family taking care of me while I was undergoing medical tests to figure out where my new stomach pain was coming from. Of course, most of these are not typical 26 year old problems.
I believe God gave me these health problems to spread the word when I can and to help me be a stronger person. I will not sit here and say that I haven't ever wondered "Why me?" when I get diagnosed with a new health problem, because I do. It is hard to try and balance everything and be a normal 26 year old. I say this, because I don't necessarily act like a normal 26 year old when it comes to daily routines. Daily, I take 24 pills a day, I guzzle water and eat more salty foods than people can normally handle to help myself manage my blood pressure and I also have to watch what I wear so that tight clothing doesn't irritate my neuropathy. Due to all my issues, have a relatively weak immune system so I get sick pretty frequently. All of that being said, my neuropathy has gotten better. A few months ago I actually had my neuropathy medication switched to a lesser dose. Which to me is fantastic...I am excited to slowly be taken off of it. At some point, it was taking too long to see any affects with my neuropathy medication and the doctors did not think I would ever be off of it. However, I am being taken off it now and that is what matters.
5 years ago I started this blog as part of a school assignment. We were allowed to write about anything we wanted. I actually had four blog posts all written and ready to be turned in, when I was diagnosed with MALS and told I needed surgery. I quickly changed my posts to information about what I was going through and about MALS. I cannot begin to tell you how many tears I have shed over the course of writing these posts. I can tell you, those original four posts helped me better understand what I was about to go through physically, mentally and emotionally. These past 5 years have been a roller coaster of health issues. But at the same time, I know I was given these problems to spread the word so that maybe other young adults do not suffer for so long before being treated. As odd as it sounds, I feel I have found strength to stand up for myself in more ways than I ever did before that first surgery because I had to learn to speak up when it came to my health.
These past few weeks have been hard, because I have been seeing posts and messages from 5 years ago when I was so sick, and right now, I am really sick. I am back to lots of doctor appointments and tests trying to figure out what is wrong. So, at the moment, I sort of feel like I am right back where I was 5 years ago. But I know I will get through it. Just like all my other health problems, I have found the strength to deal with everything from God. I will get through it, because I know God has a plan for me.
"She is clothed in strength and dignity and laughs without fear of the future" -Proverbs 31:25
