The past 2 months or so take me back to when I was initially going through trying to find out what was wrong with me about 20 years ago. Hospitals, tests, doctors. It was so scary and this has been no different. I’m not sure what your religious beliefs are but I am a Christian and I believe that God has already healed, He has already promised me this. My kidneys were at 11% and my docs told me they would not bounce back any higher, yet they are now 22%. This gives me faith that they will bounce up even higher. My sister thinks I will not only not need a transplant but won’t need dialysis. Her faith and belief in His word is so strong that she is claiming this miracle for me. I have started a FB page dedicated to my battle with lupus and my day to day struggles. The outpouring of love that I have received is overwhelming. My HS classmates have shocked me especially, they have gone as far as offering to be tested as a match if I do need a kidney. I have gotten numerous cards from them and the special thing is they have written notes specifically to me inside the card, which makes it so personal and shows they took,the extra time and thoughtfulness for me.
I have felt so alone lately and for the first time I feel loved and I feel as though I have friends that love and support me. I am having my first visitor tomorrow and she is a HS girlfriend visiting on business. I am so nervous that actually as I type have butterflies in my stomach, it is so weird to feel this way about a visit but, I haven’t seen her since HS. I have only had visitors when they are surprises so I’m not prepared and don’t have time to anticipate. I’m going to try not to talk myself out of it but I’m so scared. When will I get over this fear?
This is what I have decided to tell all of my friends that want to come see me. I can’t remain in a bubble and not allow myself the pleasure of socializing. I’m tired of hiding behind fear. I told myself that 2016 was going to,be different and so far I haven’t changed from 2015. I’m letting fear run my life and hiding behind lupus. I’ve started a FB page dedicated to my lupus journey and giving updates as they occur as well as daily activities in my life. I truly doubt anyone is interested but I’ve had close to 30 of my friends join and like the page so we will see. My sissy told me I need to make my posts shorter and not articles so I will work on that. My first visitor is my bff from junior and HS and I can’t wait to see her. Love.
I am making a change today. My sister sat down with me last night and spoke to me from her heart and it was things that she had wanted to say for so long but didn’t know how. She is so frustrated with how I’m living my life or should I say NOT living my life. She told me I need to get out and not just to our parents house. I need to see people and be seen by people. She encouraged me to finally make the call to the therapist. I listened and I saw in her face how concerned she was. She fears I will develop mental issues because of my fear of outside. It is true, I fear going to public places and I also fear being seen by those I know because of my appearance. She told me over and over how pretty I am despite the effects of my medication, this is something that I don’t see. But one thing did resignate and that’s that no one can do it but me, no one can take the first step but me. It’s time, I’ve talked about doing it for years and have just gotten comfortable not doing it and I had no motivation. I’m still on the line of being motivated and not but, I’m pushing myself over to the motivation side of the line. I have to, if I want to live life and experience it to its fullest I have to leave my home. I love my home but, I actually think I’ll love it more if I leave it more often. I always remember people saying with an Ahhhhh, I can’t wait to get home or I can’t wait to get into my bed. Well, I’m always home and always either on my couch or in my bed. I rarely put on clothes, I stay in my pajamas all day everyday. Ok, I’m supposed to be more positive and this sounds pretty sad…lol. But, like I’ve said its my truth. I had a conversation with a former friend years ago and she used an analogy about the egg and being boiled or something, I can’t remember but,basically it’s about how you respond to something difficult in your life. Does it make you hard or strong or does it make you weak and you give up. I took her saying this to mean that she was calling me weak because of my blog posts up to that point. She wanted me to write more positive things and not be so negative and at that time, I felt there was nothing positive about my life. I also felt as if she wasn’t being supportive of me at all. I was expecting a response of empathy of what she had read and what I was going through but I didn’t get that and it hurt and we haven’t spoken since. It’s a friendship I miss but if she could simply walk away from me that easily the friendship obviously meant more to me than it did to her and I accept that. It’s 7 am, I have to call the city at 8am because there was a dead cat, that I named Midnight, at the end of my driveway in the street yesterday, I kinda shed a little tear,when my dad got it up, he was just limp with no life in his little body. His life was over in an instant. It made me think of life and how precious it is, and the importance of living it. After that call I will, deep breath, call the therapist. I got knots in my belly when I typed that. It is my first step to getting it together and more positive posts on my blog. I have a saying or a hashtag…honestyIN2016, and I mean it, I’m being me, I’m not hiding or trying to sugar coat what I’m going through. For those that don’t want to hear it don’t read it. As always God bless.
this post is dedicated to Midnight.
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.