Most of us go through our entire lives just accepting what has happened and move forward. Some things take a bit longer to digest and deal with before its accepted and life goes on. Very few ever take a look back and actually think/analyze/see any effects of most events. Some of us either live for right now, or go through the present barely there while preparing for the future. Others remain stuck in an endless loop of trying to relive parts of their past. Some even just live to make it through the end of the day. That's not to say that most of us don't have goals, plans, ideas, or hopes for the future, but rather sometimes you have to take a hard look behind you in order to realize where you are now and where to go next. It's during that time that the light bulb goes on and suddenly you realize why you are where you are. In my case, I realized it's my own fault.
This past week has been a pretty rough one. Again. I was introduced to the new student dean on campus who, after a brief look at my school file, assumed that I'm not fit enough to finish my education at his school. If I'm too sick to finish one class, I'm too sick to finish all. I now have some pretty powerful allies behind me and a plan to finish my education there. Just like employment, it's not that I CAN'T get a job, but rather I can't KEEP one. Employers are sticklers with rules such as showing up on time when scheduled and always doing so, vacation time aside (that is, of course, if you're lucky enough to have a job that gives you vacation days). That's kinda where I have a problem. And it's no different with my education. My mind still works (most days), but sometimes my body has other plans. This is something the dean doesn't quite understand--yet. Then it hit me today. It's my own fault.
When I was finally diagnosed 9 years ago, I was too relieved to find out that no, I wasn't crazy, and yes, what I have has a name. And I left it like that. Even with mounting evidence that something else was going on, more symptoms that couldn't be explained away by my disease, and having more questions than answers. While I got frustrated at times, I still blindly followed my doctors' orders. New symptom? Same old tests, but new medications to treat the symptoms. I stopped taking almost all of my medications. There are 3 I need to take daily: my inhaler for COPD, an anti seizure medication to control my cluster headaches, and a stomach pill for heartburn most likely caused by steroids and my recent weight gain. I say that because when I lost 140lbs, I found that I almost never had heartburn. I do have other prescriptions on an "as needed" basis--panic attacks and when the pain gets too bad for Advil to do much good. I try not to take either of those unless there is little to no other choice.
I started meditating again and doing low impact workouts (yoga right now... have to work up to a more difficult routine via baby steps), I changed my diet as much as I could. I prefer fresh fruit and vegetables over canned and/or frozen processed ones, instead of "whole wheat" I switched to whole grain (whole wheat products tend to be much more processed), cut out all fast food, and have cut out a lot of processed, preserved, and ready to eat foods. That's not to say I don't like the occasional junk food. I can feel a difference when I eat something that's not as healthy versus what is. It's not always easy, but it was/is something.
As far as how this is all my fault? Other than becoming a few doctors' sheep, I haven't advocated for further testing, more concrete answers, I haven't asked enough questions or made sure the questions I have asked were acceptably answered instead of getting frustrated and accepted non-commital, one size fits all answers. I have also in general put my own health on the back burner for a number of reasons. Lightning strike number 2.
Growing up, I've heard a lot of "you're so much like your father." While in quite a few ways it is true, I've come to realize that I'm not as alike as most people assume or as much alike as I also assumed. I'm very much like my mother. And I'm very much like her in the important ways that count. Not too long after I had to leave work, I went through a bit (okay, more than a bit, but that's besides the point) of a selfish period. I couldn't be THAT sick. Why, of all the evil, selfish, horrible people on this earth, was I sick? I did a lot of stupid, selfish things. But I was still a doctor's sheep. Taking pill after pill not to cure me, as there isn't a cure for fibromyalgia, but rather pills to manage symptoms and try to give me some semblance of quality of life. Then my brother moved back home with his infant son. With the help of my mother and I, we not only helped take care of that beautiful little boy, we stood behind and supported my brother while he figured out what he was going to do with his life. While he didn't have a bad job, it wasn't quite a job that was good enough in his mind to provide for his son. He chose to go back to school so that he could have a career, benefits, retirement plan, and the ability to build a great life for him and his son. I not only highly respected him for that choice, but supported him. And I was damn proud of him for it. I still kind of miss having missed his graduation with honors because his son (then about 2 years old) preferred to run amok in the foyer outside of the auditorium. Because of his hard work, he accepted a great job to further his dreams. And while he was working hard to get where he wanted, my mother and I were always there to help raise his son. (Just a side note... I firmly believe in nature vs. nurture--that adorable little boy is, without a doubt, a mini-me. My brother was always the quiet one, stayed out of trouble, did as he was told almost all of the time... my entire family and family friends have never let me forget that I was... well...not quite as docile. You could blink and I would be into something). Even though both have moved out, my nephew with his mother, my brother with his new wife and family, I look forward to my weekends with him. But back to the point. During all of this, I remained a medical sheep, choosing to accept the blanket diagnosis, but putting my own advocacy on hold to help my family.
I further put my healthcare on hold after my mother got sick. She spent almost 3 weeks in the hospital due to renal failure and over a dozen mini strokes (TIAs for those familiar with it). I wish I spent more time in the hospital with her, but her mother was coming up to stay at the house, my nephew's mother stepped up and took him to help us and get to know her son better, I had what seemed like a zoo to feed (giant macaw, 10 guinea pigs, 2 dogs, a mouse, chinchilla, and I'm sure I'm forgetting a few), family and family friends to contact, call, email, text, etc. as everyone was very worried about her. Mom isn't exactly the best patient in the world. As long as she knows what's going on, why tests are being run and for what purpose, what medications she's being given and exactly why, she's not AS bad. Having gone from a heavy smoker to nothing in addition to sitting in a hospital room helped nothing. Other than the 4 million questions, tantrums, and the usual reaction to being stuck almost helplessly in a hospital room with very few answers for the first few days, she was more worried about the house. Is it clean? Is it "Nana" clean? Am I making sure that my father and grandmother are taking care of themselves (or am I making sure they are?) And considering it was around Christmas time, she was extremely worried that the tree wouldn't be up and decorated. So, I would wake up, have my coffee, feed the zoo, wait to hear from my dad to hear an update, send out all of the appropriate messages to family and friends to ensure them that she was okay at the moment. Then I'd head to the hospital after all of this was done to visit her myself. I can't lie. It was difficult to see her like that. The strong, strong willed, stubborn, seemingly unstoppable woman sitting there frustrated, looking defeated in a hotel room. When I finally got a few moments alone, I told my mother not to worry about the house. It would be so scrubbed, cleaned, groceries provided, and had made arrangements with my oldest friend--my best friend of 22 years that our Christmas tree would not only be put up, but decorated. We would play the rest of the house decorations by ear, but mom being mom, was more concerned with getting the tree up. I spoke to my mother one morning after speaking to my father and told her I had a few things to take care of at home. I scrubbed floors, ceilings, animal cages, scrubbed the furniture, the kitchen, you name it, I did it. After all, mom wanted the house to pass the "Nana inspection" and a tree had to be put up. It wasn't much, but it was something to help ease her mind and focus on her own health. My biggest fear was that she wouldn't come home from the hospital to see the tree. My father walked in that night to find the house not just clean, but sparkling clean. I remember he walked back outside and back in a few times to make sure he was in the right house. A "Nana inspection" is somewhat a cross between a military inspection and a white glove test. I even cleaned my bedroom(I chose the couch during her visit), put a small vase of fresh flowers on the night stand for Nana, bought her tea, and made sure I knew what she needed, when, where, and what she needed to eat considering her own health. I'd of given anything to be there all day every day, but I knew that I had to take a backseat role to make sure that everyone else involved was taken care of. My mother was in good hands in her room. And I knew if she knew I was taking care of the "other" non medical stuff, she'd understand. And she did.
It was a tough transition when she came home. Between her recovery and blood pressure medications, there were many days she could barely get out of bed because of what her body had just went through and medication side effects. I realize now that I never gave my health a second though.
Since that time, I decided to return to college. Being a patient of a life changing chronic illness, I know how the medical and psychological/psychiatry field treats patients like us. Dealing with a life changing illness is an extremely difficult event to not only wrap your head around, but it is difficult to deal with. You spent all your life setting goals, working, learning, and traveling the path you seem to have set out for yourself. Then life drops something like this in your lap. It's far from easy to deal with. You have to change your life, the way you think, you deal with doctor after doctor who push pills to help you feel better, to improve your quality of life, then you're pushed out the door as if you're not a person, not a patient, but another number, statistic, billable hours. The mental health field isn't much better. More medications, little to know listening as to what is going on inside your mind and what it's like to have one life one day, but a totally different life the next. You can no longer do what you used to. You don't know if you'll ever even get back pieces of the life you were forced to leave behind.
I could empathize with my mother. No, my kidneys weren't failing, no, I wasn't on 50+ pills a day to control blood pressure, absorb kidney damaging nutrients and minerals, or to have that moment to look back and see her life, all she did, everything she sacrificed to get where she was. And just like that, it was gone. But through my own experiences, it doesn't mean life is anywhere near over. The second time she was hospitalized was the end of a good run and determination. Her kidneys had failed for good, having lasted much longer than her specialist could have ever expected. While she's slowly coming off more medications to control her blood pressure, she spends 3 mornings a week attached to a machine to filter her blood--something her kidneys are no longer capable of doing. She is on the National Registry, but there is a minimum of a 7 year wait list.... longer for rarer blood types like hers. I discovered I'm a perfect match, but cannot donate due to my own health. Just like with everything else, she came first, my family came first, my goal of finishing up my degree was at the top of the list. My health continued to sit on the back burner. And it has remained there until now.
There is no point in going over the "what ifs?" the "should haves, would haves, could haves." The only thing to do now is to focus on myself, fight for tests, answers, make it clear I am neither a pin cushion without good reason, nor a sheep who is just going to sit there and nod listening to the same things I've heard from years. If I'm no good for myself, how can I be expected to help others? What if I am following in my mother's footsteps? It's time to find out now before it becomes too late to be able to help anyone else.
So how am I like my mother? She put her family first, she sacrificed what she wanted, she gave up almost everything to make sure her family was taken care of and it very well have caused her to become ill much earlier than she should have because she chose to take care of us instead of her own health. And I've realized that I have been doing the same thing. And for that, I couldn't be prouder to have inherited that trait. Not everyone can do what she's done. Many people would run away, find excuses to stay away until something is needed, some just pretend none of it exists. Well, it does. And for those who choose any of the above options are cowards. Selfish, self-centered cowards. Especially when it comes to family. Life may not always turned out the way we wanted, but when those detours and road blocks do get in our way, our reactions to them are what helps us become the people we are. While I cannot control others' thoughts and actions, I can, however, choose how I react and choose who I will keep in my life.
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