“Let’s go on a trip” the words that I am never prepared to hear or want to hear. Why is that? I am 38 years old, single, childless, with all the free time in the world and don’t want to go anywhere. Lupus??? Is that why? It can’t be, Lupus doesn’t define me or does it. Have I gotten to a place in my life where I am not letting myself be defined by what I’ve done and my accomplishments, but simply by a condition that I didn’t have to apply or even study for. Today has taught me so much about myself and who I still am, my name is Erika and I have Lupus but I will never let it have me.
May 24, 1968, the day my best friend was born. She is the most caring, compassionate, loving, smart, beautiful, funny, silly person I know. When she smiles it’s contagious and when she really gets tickled her eyes disappear. Whenever I have a question about anything she knows the answer, she is truly the smartest person I know, and I know alot of people…LOL. But seriously, she was made to stand by me through everything, there is no way to know how your life will twist and turn as you get older and more importantly who will be there for you. In a nutshell, never take your present “perfect” circumstance for granted and those that are reaping the benefits, be sure they are the same individuals that will be there when the circumstances are less than “perfect”.
It’s hard to be 38 and living at home. It is an absolute pleasure and blessing when I am sick, but once I am better not so much. I know I am their child, but at the same time I am an adult and I have opinions of an adult. It is sometimes hard to not see the line that separates child from adult. I have things that I want to say, but according to my father I need to know my place in his house. That being said, it’s time to get the hell out. I am able financially so what is stopping me. Me. I am so comfortable in my parent’s home, but life is not about being comfortable, it’s about living and getting to know who you are and at 38, I’ve yet to learn that. It’s time, beyond time.
The more I live my life, the more I know I need a change. I had given up on children and marriage and felt that lupus would be my companion for the remainder of my days. But, you know, I don’t think so. I am not depriving myself what I know my heart desires and that is it. For health reasons, babies are not an option, but a husband, last time I checked, is definately still an option. I have dated since my diagnosis, but not recently with the worsening of my lupus. I am not as active but, I am far from dead..I hope. There is a problem, I don’t go anywhere so unless he is going to show up on my doorstep we aren’t ever going to meet. I have to put down my fear of going out and having people see me limp or use a cane. These are my issues that need to be dealt with. I am heading in the right direction, but it takes time and if you haven’t figured out, I am literally an extremely slow mover.
My nickname used to be social butterfly, I loved to be out and about and I could ease my way through any social situation. Unfortunately, this personality trait is on hiatus or it actually may be retired. I rarely go out at all, but after having a recent pity party, my sister was determined to get me out of the house. She and her co-workers convinced me to hang out for a little while. This should seem almost a no brainer, but alot of thought goes into any outing with me these days. I knew that I would get tired and need to rest, this is not an issue when it’s just my sis and me. In some way I feel like a burden everywhere I go and I don’t want to inconvenience anyone. On top of that, I have to know exactly where we are going and the parking situation. Honestly, after going through all this in my mind I am too tired to go. But, Friday night I made the decision to release my hermit role for one night and socialize. It actually went very well, I was able to sit when I needed to and didn’t hold up shopping progress. Then there was dinner and despite it being 30 below 0 in the restaurant, I survived…or so I thought. Saturday morning reminded me of why I choose to stay in and how I lost my butterfly title, and at times I truly believe to get out and be amongst the living is not worth the pain that follows.
Everyday is different for me physically. All week I have felt no pain, no nausea, no dizziness, no nothing. Then last night I felt it, the aches and pains resurfaced, the feeling of being alone and no one knowing how it feels to have a chronic illness. It is a very lonely feeling and unless you are unfortunate to be afflicted you will never understand. I remember when I was first diagnosed, I would be told “You don’t look sick”,(youdontlooksick.com) WOW, I would think, that is so bold, but it was true, one day I seemed to be my old self and the next had aged maybe 40 years joint wise and that is hard to understand. That is lupus, it is unique and mysterious. Which makes it hard to manage. I will never forget after receiving my handicap placard, which made life alot easier for shopping trips by myself. There was an older woman that, as I got out of my car stated “You don’t look handicapped to me” I simply replied, “Thank you, doctor”. You gotta find humor from somewhere.
Well, the answer is yes for today. Today was a very bad day, but thanks to love from my mother, father, sister, and doggy nephew…..I’m good.
I have been suffering from insomnia for quite awhile, despite taking ambiem at night, I am normally up until 4am. This started before I lost my job but is definately happening more frequently. In the past 10 months I have gone no where except on sister dates. So sad, but it’s my life. I haven’t met any new people or come in contact with people except when going to doctor’s appointments and they are all elderly. My life is pretty depressing and I feel I need a change of scenery to get me motivated again. I am anxious about what is to come and making decisions on my own. I am starting to look at apartments locally now and depending on what happens later on this summer I may be looking elsewhere. I am sooooooo excited and this is the first time in a long time. It feels good. The only thing I am concerned about is when I spoke to my lawyer for disability he was pleased that I lived at home so I will let him know my plans and hopefully that won’t in anyway affect me getting disability. I do need alot of assistance day to day, but I also know that I need to learn to navigate myself through certain situations because sooner or later I will be alone. Reality is scary and it hurts but it’s real.
At this point, I know I’m moving I just don’t know where. I am thinking about moving south while I wait on my disability decision, but then again I want to stay closer to my parents, who are my security blanket. It’s time to let the blanket go, don’t ya think??? With my illness it’s scary as hell to think of getting sick without my parents to comfort me, but it must be done. Literally, as I am typing I am shaking just thinking about not being close to my family. I have to live my life, I have to learn to deal with being sick by myself and depending on myself when I am sick. I know I can do it, I just haven’t had to up to this point. Do it girl……O LORD help me.