I saw my Cardiologist on Wednesday. He is concerned that my Wegener's has spread to my heart. So, Monday, I get a halter monitor, Tuesday an echo, and Wednesday, I get the results of all of that. My Cardio-Thoracic surgeon also wants to make sure my heart is healthy enough to undergo surgery. My Cardiologist placed me on 125 mg's of Digoxin to help slow down my heart-rate as it was 202 when I was in his office. So far, my Wegener's is affecting my lungs, my sinuses, my brain, my heart, my knees, and my GI Tract. And...my Cardiologist explained it me that once you have one form of Vasculitis, typically you have most forms of it in some way. This is why it will eventually be terminal.
I have become accustomed to hearing bad news at every doctor's appointment now. It doesn't even surprise me anymore. I think I am just sort of numb to it all (well all but surgery). I think the reason I am so terrified of surgery is because one time when I was undergoing surgery, I had an allergic reaction to Versed. I quit breathing. Since then, I have been terrified of any type of surgery. Eleven days...I am not sure if I want it to hurry up and get here so I can get it over with or not.
So, in these eleven days, I have to get a lesson plan coordinated with KB and Damion so they can keep the kiddos lives as normal as possible. I have to print off some worksheets and teach them how to put their grades in the grade-book. I have to train my dog to stay off the bed so that when I come home, I won't have to worry about her jumping on me and accidentally hurting me. I have to figure out a meal-plan so that KB has an easier time getting the kids fed before he goes to work. I just have so much to do. I am going to attempt to accomplish most of that this weekend and teach the kids both Saturday and Sunday so they can be a little bit ahead.
My South Padre Wedding is going to have to be put off until the spring. I won't be able to travel far in November...so we are going to figure out something closer to home but will still be beautiful and romantic. I am so excited to get married...I really did miss being a wife. So, our plans will be changing a little bit, but I will still be able to write my name in the sand, just not in November. Such is life.
My oldest turns 18 in one month. It is so hard for me to believe that my 6'4, 250 lb, size 18 shoe kid was once a premature baby fighting for his life in NICU. He was the very first love of my life. And of course, as a mother, it breaks my heart that he is almost to adulthood. He is my rock and always has been. I really have been blessed with three amazing children...I absolutely have no idea nor do I ever want to know, where I would be without them.
I am really trying to stay focused on being positive and I am also working on grounding techniques to help my anxiety. The trick to all of this, especially when it comes to me, is to divert my attention away from just sitting here thinking all of the time. I do believe that when an illness is confirmed to be long term, you have to be willing to look towards your own mentality in how you are going to cope. Ideally, we would all benefit from having a more optimistic viewpoint of difficult situations in life, yet the chances are, we fall into the pessimist category within circumstances that we find discouraging.
Do I find it hard to find the positive in being chronically ill? Absolutely! I can either give up, or I can try to accept the circumstances as they were handed to me...for whatever battles I may be having to incur. It has become a necessity for me to focus on at least one aspect of positivity during my day to get me through. On my good and bad days, whatever I feel I can't handle, perspective in any situation I face, rational thinking and any small aspect of hope within positivity is what I try to cling to and switch my focus towards.
Regardless of how I feel, whether that be incredibly low or clearer in my thoughts, I try with all of my might to seek perspective everyday. I have a daily battle of acknowledging that for every negative I may feel or think, I must try and balance it out with a positive in order to gain a better perspective and clearer mindset. I realize why I am luckier than some, I acknowledge the thoughts that we are quick to forget such as a roof over my head, a warm bed to sleep in, food in my stomach, 3 adoring kids, a loving man, a wonderful mother, and great friends; and I think of how much worse my disability could potentially be. Being more positive equals progress no matter how you shake it. There really is no right way of dealing with chronic illness. We are not handed a manual that tells us what we should or shouldn't be doing. Illness is unpredictable, it will never be a textbook fits all type of scenario. What works for one, won't necessarily work for someone else. And that is okay. Illness is terribly isolating. One of the most beautiful things about life is that no two individuals on this Earth are the same.
One of the hardest things that I have ever had to accept about this illness is that I have to ask for help. I thought that by asking for help, saying no, or not having the full approval (imagined or not) meant that I was weak. I was wrong. Obviously, that doesn't work at any point in life, sick or not. Striving for perfection only sets you up for failure and heartbreak. It also causes havoc on your relationships. It also creates an upside down picture of God's love and His grace.
It took me quite a while to get it through my thick, hard-headed self but I learned that my strength doesn't come from me. Yes, I am strong, confident (sometimes), and determined, but, my strength comes from God's love, grace, and mercy. From there, my strength filters throughout all aspects of my life. All I have to do is drop my defenses, allow my heart to open, and God's love will do the rest. Being brave starts with putting myself aside. Being brave starts with grace...and through God's grace, all things are possible.
P.S. Sweet dreams and make sure you tell your loved ones just how much they mean to you everyday. Tomorrow is never guaranteed.
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