Ok, so I am back in the nest, temporarily, but it’s time to make a move. Being on your own is something that all adults need to do. Whether you are healthy or not, you need independence. Filing for disability is moving slow so I have plenty of time before my hearing and honestly living with my parents isn’t the best emotional and mental arrangement for me right now. I know my parents love me but I need to be alone sometime and have my own space. Also, in doing so would open up the possibility of me getting medicaid, which is extremely cheaper than what my parents pay now for my monthly premium insurance. To me it’s a no brainer, but I have to weigh all of my options and decide what is best for me. My mom has her opinion of what I should do with my money and I do respect that. Honestly, I normally do what she says because it’s easier and I am in her house. But Uhhhhhhhh, I am 38 years old and not 5 which is how I’m treated alot of the time. I must admit I do appreciate knowing that they are here to care for me when I need it but I want them to let me go when I’m well also. Erika has to be an adult and learn how to live with a chronic illness alone and take care of herself. FINALLY. Thanks Sissy. LYSM.
That tag line from Whodini really says it all. Dealing with lupus has cost me alot of relationships and the thing is it may be more because of me and not them. I have used my illness as a crutch, telling myself that I can’t do things anymore because I am sick. I always used to think that my friendships dwindled because of lupus, but in reality it’s because of me letting lupus dictate my life. I truly don’t have a girlfriend that I talk to and spend time with. I have talked about my sister in previous blogs but I am referring to non related friends. I have no outlet, no one to call to meet for dinner or just talk besides my sister. Don’t get me wrong no other friendship could even compare to what my sister and I have, but you need friends. One of my girlfriends recently called me to wish me a happy birthday and just see how I am doing and I am hesitant to call her back. I think I have gotten so used to being alone it’s difficult for me to reach out and that has got to change.
Well what is going on with me “today”??? Besides being exhausted, having body aches, nausea, dizziness, insomnia, headaches, depression, a limp, rashes all over, and a moon face, really nothing. I’ve been having more conversations with myself about my future and what I expect of myself within the next few years. I will be 40 in two years and the two years leading up are going to be memorable. I am tired of just existing….it’s time to be living. That may be my new motto. Life is too short to not leave the house for weeks. Even if I am in pain, I will fight through and with my sunblock, let the sun shine on my face, but only for 10 minutes because I may flare. I tell you it’s always something with me and Lupus. My lupus flares are sparked by sunlight, exertion, stress, and simply doing nothing in some cases. My current medicine regiment has pretty much been the same for 10 years, with the exception of a few changes here and there. In total, I take 8 pills in the morning and 9 at night and insulin once a day. I am finding out different side affects on a sometime daily basis. I am looking to get into a support group for lupus, why it’s taken me this long I really don’t know but the important thing is that I am ready now. It is a scary thought to open up to strangers about something that I consider extremely personal, but I am aware that talking and listening begins the possibility of teaching and learning. Ummmmm another possible motto. Love.
My boyfriend of one year died a year ago today. It is still shocking to me that he is no longer here. But I know he is at peace, finally. I say finally because he had such a tumultuous life, dealing with family and friends. His heart was as big as he was and that was big. He was a teddy bear and wanted to do whatever he could to make everyone happy. We had a connection from the moment we met and we both knew it. I miss him terribly, but I know he would want me to be happy and live my life to the fullest. Rest in forever peace….I love you always and I can say it now.
Ok, I started my book, Floating like a Butterfly about 10 years ago. The book is loosely based on my life and follows the main female character as she waits for love. The thing is 10 years ago that is where I was in my life, today is a completely different story. What I am waiting on now is acceptance from social security for my disability and not a man. I’m not feeling my original plotline, but would a book geared more towards lupus and where I am now be something people would grab off the shelves…wait a second, would it even be appealing to a publishing company. These are things to think about. It’s nice to be able to live through a person that I’ve created, but I’d also like to write down what I have been through because that is one hell of a story. So, are two books the answer? It will be a challenge but I’m up for it. May is Lupus Awareness Month so most of my blogs next month will be focusing on education in regards to lupus. The disease itself, symptoms, treatment, and living with a chronic illness. It affects more than just joints and body systems, relationships are tested, your mental state is tested, your sanity is tested, things that aren’t talked about as much. For example, I will cry if I misplace an envelope, this happened just last night and I have no idea how to handle these emotions. I am confused all of the time, I get in my car and will drive to the wrong doctor’s office and argue with the receptionist because they don’t have me scheduled. It’s embarrassing, but it is who I am now. I am a Lupie!!!
-I have learned to be mistreated is to accept that I am not worthy. I refuse to let myself be taken down a path that ultimately doesn’t lead to my heart’s happiness. I am aware of everything happening for a reason and everyone entering my life for a reason. In some cases to make me stronger and in some cases to make me aware of my vulnerability. The key is to LOVE myself first and others will have no choice but to follow suit.
Floating like a Butterfly
By Erika H.
I have been away for a bit, but I’m back. Spent my birthday in AL celebrating my aunt’s 80th birthday and mine followed on the 2nd. It was lovely to get away with my mom and sis. We left dad and doggy at home so they bonded..lol. I have made a discovery, just because I am unemployed doesn’t mean that my life has to stop. I have literally stopped since I lost my job and the stopping has to stop. Yeah, that makes sense. I got the best advice from my baby 2nd cousins, Jen & Jess to stay motivated and keep striving towards a goal. They are so beautiful, intelligent, and at 23 and 25 are definately more together than I was at that age. I started writing a book years ago but work and dealing with a chronic illness sidelined that project. Well, I have all the free time in the world and I am going to do it. I must admit it is pretty damn good and I am kind of excited, which is a very good feeling. So my next few blogs will be excerpts from my book titled “Floating like a Butterfly”, I think I may have to do legal stuff to keep that title because of Mr. Ali, but we will see. Pray for me and know I am praying for you.