In the last 8 or so days, I’ve been hit with a serious blows to my psyche. It has come to my attention that four fellow lupus warriors have died due to the complications of lupus. The most recent of whom passed away today. Not only did she have lupus, but she also had my other primary condition, antiphospholipid syndrome. I haven’t been this upset over a death since learning that a fellow lupie took her own life last September.
Despite better treatments for lupus, lupus is still potentially fatal. Because I’m well aware of this fact and am not afraid to face it head on, as a general rule, when I hear that its complications have taken another life, I’m not terribly bothered even if I am a little bit upset over it. But when it is 4 deaths in a very short period of time or a suicide, remaining rational is a lot of work.
Those who are familiar with my story know that overall, I remain very positive regarding my illness. I have kicked its ass more times than I care to count. Once in awhile I have to retreat from a battle in order to survive the entire war. This disease has resulted in me requiring a hysterectomy when I was 29, having over 12 TIAs (first one when I was 19) and one full-blown CVA (stroke) at 30. I think it is fair to say that I am a fighter, even if it causes me to rant every now and then. The day I stop ranting is the day I have no fight left in me.
My brain is currently doing all that it can to fight through this next dark patch in what is just another dark period one has to walk through. Regardless of what we go through in our lives, regardless if you live with a chronic illness or not, we all have them.
When reality decides to slap you HARD, I think it is even more imperative that you fight, even when it is through tears and wanting to scream ENOUGH! I also think it is time to try and find the good in the very dark, while still remaining realistic to the situation. Doing so is what got me through relearning how to walk and talk and eat and dress and bathe, even if it is was simple as reminding myself, “Today my toe moved for the first time in a month. I am making progress” and trying my best to not focus on the fact the rest of one side of my body was still immobile. For me, surviving this mentally is so very much about the small things. It is also about venting the really shitastic things so that they don’t get bottled up and gnaw away at me, until the load becomes way too much and I collapse under it.
Right now, I am thankful for the people who have reached out and offered me real, tangible, support. Right now, I am thankful for a wonderful staff. I am thankful for a staff member who asked if he could write an article for me because my brain is just too tired. I am thankful for a staff who steps in when I have reached my limit. I am thankful for a staff who does not tell me to cheer up while I’m a hot sick mess of tears and think I am mental. I am thankful for a staff who I can say to them very bluntly that they’ve screwed up and they know it isn’t personal. I may vent now and then about my staff. At times, I may have to hold their hands more than I would like to. But I am thankful that when I have reached that point of “no more”, I can simply state it and they know it must be something major. I am thankful for a staff who, except for a couple exceptions, may not “get” it but they try and they care.
I am thankful to all those who sent me silly and stupid jokes today and helped me to laugh through my tears.
I am thankful for a significant other who let’s me go off on them from, what may appear as, out of no where and just instinctively knows I have reasons, I’m just unable to articulate them as I normally can and that when I am ready, I will. I am thankful for a significant other who may want to tell me to sod off but just lets me have my moment, knowing that it will quickly pass. I am thankful for a significant other who always knows what I need to hear and doesn’t tell me what he thinks I want to hear. I am thankful for a significant other who offers to take the load off before I become overburdened.
Yes, I am still beyond frustrated at the moment. I am a millisecond away from telling the world to bugger off. But I am thankful that I can express these things and more people than not try to understand. I am thankful that I have a way to shed some of my burden and that there are a handful of people out there willing to pick up the load.
I know there will be some who read this who will want to send me their prayers and/or well wishes. I ask that you save those. Not because the well wishes are not appreciated. I know I have many supporters who just want to see me get through yet another battle with the crap lupus likes to through out. But if you really want to help in a way that is tangible, then educate yourself.
Whenever I talk about my lupus with someone new, often I hear, “I know someone with lupus” but they still do not know exactly what lupus is or what it can do. If you’ve tried to navigate the web and just can’t understand it, then ask me questions. They answers may not be sunshine and roses, and can be quite depressing but ask. If I can’t type out the answers because my brain is toaster, I’ll record the answers and make the audio available.
You can also donate to your local lupus organisation. There are so many mysteries surrounding this disease and it desperately needs money for research and treatment. I would really like to see a day where they can give a prognosis like they can with cancer, instead of having to make guesses all the time.
Be proactive. Sure prayer and well wishes can make people feel warm and fuzzy. Sure feeling warm and fuzzy and trying to remain positive can help in the healing process but it isn’t going to find a cure. Education and money is.
I was hoping that my next blog entry was going to be something full of joy. Things haven’t exactly been cheery in this corner of my internet world.
I will try to leave it on a positive note.
Sincerely, thank you to every single one of you who is helping to carry my burden. Thank you to every single one of you who has let me vent and cry so that I can move on in the next step of my plan of action to resolve this situation. Thank you to every one of you who has taken even 5 minutes to educate yourself regarding lupus. I may generally rant from time to time because at times I feel people are not doing enough. That does not mean I do not appreciate it any less. It just means I have moments of being human.
I will get through this. I don’t know when but I know I will. And yes, I am taking some time to myself. I have informed the general population, meaning my staff ,that I am not to be bothered for any reason until March 1. I know when I’ve reached my limit.
Honestly, guys. I know I’ve said it before but I will say it again, I do not think my mental well being would be nearly as intact as it is, if it were not for you reaching me via code and fiber optics. I am very fortunate to have so many people, most of whom I’ve never met in real life, who genuinely care and are supportive. And knowing that is my silver lining.
PS: If I do not respond individually to people over the next few days, it isn’t because I’m not appreciative. I’m just needing some extra me time and am currently in my cave, tending to my wounds.