There was a woman walking from a Bible study group a few homes away from my parents home maybe 6 months ago. She called out my dog by name, yet didn’t know his name, she asked my mom if she was the owner and mom told her no, that i was. She walked up to my mom and said, I pray for your daughter’s health and I see cancer and was using her hand to go in a circular motion in front of her stomach. My mom told her I didn’t have cancer but I had lupus and kidney involvement so she assumed she was referring to that. We were blown away by this woman but really didn’t think any more of the cancer until a few weeks ago when i was diagnosed. i wish i could talk to her, maybe she was an angel just meant to inform my mom of what was to come. whatever or whoever she was i am grateful for her.
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.
As I get older I fear losing her every day. I dread the day I may get a call that something has happened to her, maybe not necessarily death but just that she has been injured in anyway. I received a call from my dad over the summer that he had been in a car accident and simply him being able to make the call assured me it wasn’t that serious. The only loss was his 1992 Honda Accord that he cherished and still mentions to this day. I depend on both of my parents due to my limited physical ability because of lupus. My dad does more of the footwork for me but when I’m ill the only thing that gets me through it is my mom. I haven’t figured out a way to mend myself without hearing her voice. I am wanting her to record her voice comforting me and I keep putting it off but I will no longer do this, because we never know what tomorrow holds for any of us. I want to do so many things with her but I barely have energy to do the basic things for myself. I love just taking advantage of rides to my doctors appointments with either one of my parents just to have that one on one time with them. I always ask my mom to take me places for that additional time together as well. She always seems to have an excuse that she has to get out very early and this is a problem for me so it never seems to work out. I guess if I were honest and tell her I just want to spend time with her it would make a difference but, I just don’t. My dad is flexible I can call him at noon and ask him to take me somewhere at 2 and he is ready. My sister is way more independent than I am and has been since she was 18. Angie couldn’t wait to get out of the house and I tried to stay and then come back as often as possible thereafter. We are so different but she is my best friend in the world. We made up a secret handshake today, it’s so cheesy but it’s really cute and just seemed right for a 41 and 47 a year old to do…lol. I think about death often, I am not sure if it’s because I fear it or I just know I’m closer to experiencing it the older I get. It’s 2016 and I want to embrace life and let go of fear. With the terrorism we have faced as a country and in our world I have stopped doing a lot of things I never second guessed before. I don’t go to libraries because of the access of the building to anyone wanting to cause harm, I never started going to bible study for obvious reasons, and also no movies for me until they are released and I can watch them in the safety of my own home. I have let fear dictate a lot of what I don’t do and I’ve been ok with it but I’m bored, I’m sad that this is how my life is at this moment. I’m not satisfied anymore, I’ve been content living this way but no longer and my mom and how she continues to live her life is my motivation. My mom goes where she wants when she wants and fear isn’t a factor. I truly admire that in her. Yes, there are others that also have not let fear stop them from living and experiencing things but my mom has always been the woman I look to for direction and I’ve admired her my entire life. She would absolutely not like me writing this about her because she is a very private person and feels you don’t make certain things public, it’s not necessary. She doesn’t understand FB or any social media sites in which you share thoughts or photos with people you rarely know, it’s vey strange to her. At one point she didn’t want her picture on my social media period but, she has kind of given in to that a bit as long as she approves the picture first…lol. She and my dad also step in as good grandparents to Reece, my 19 month old Shih Tzu puppy when I need help while I’m sick. I must say my parents are the best in every way. Obviously there are somethings that we argue about and disagree on but at the end of the day you choose what is important over what’s not. My mom, my love, my friend. The woman that taught me how to be a lady, how to be proper, how to carry myself accordingly, how to enter a room with dignity, how to respect everyone and never not demand it in return. My mom is my sHERO.
It has been confirmed, at 41, I am going through menopause. I was reading my labs and it was a little difficult but it seems a normal range of your hormone level while going through menopause is at max 67 and I am at 122. This is normally in women going through menopause at a very late age, usually around 70-75. My doctors call me an enigma and this just helps that theory. My doctors response after the lab results was “serious menopause, WOW, no wonder you are so hot” in addition to this I am having another form of lupus starting to show its ugly head on parts of my body, so fun! My medications have been adjusted to hopefully stabilize this as well, it is called discoid lupus, basically lupus of the skin. I also will see my gynecologist in January to discuss my options moving forward with the hysterectomy. I am also still having kidney disease and we have to wait and see if the medication I’m taking now will reduce the amount of protein spilling into my kidneys causing them to slowly shut down. Worst case scenario I will need a transplant, I think I have spoken on this on a previous post. Surprisingly I have not been praying for myself lately. It is a little boy with a brain tumor that is fighting for his life. He literally had symptoms one day and by day 3 was in the hospital unable to walk or talk and losing most of his bodily functions. He has since started to turn around but his prognosis is not good. He is who I pray for as well as thousands of others, his story is not only on television but on FB and I thank God for everything he’s provided me with but to save Kyler Bradley, he is just a baby compared to me and going through so much more with an entire life to live. It’s funny how despite what you may be troubled with in your life it’s so easy to just place that to the side when you come across someone else that is worse off than you are. I don’t feel like I am a strong person at all, I let lupus defeat me. I cry and have pity parties for myself and feel as though I’m letting it win. There are t shirts and sweatshirts with sayings like “I may have lupus but it will never have me” or “I am fighting lupus like a girl” I feel like such a fraud when I wear these types of things because I am not fighting, I am a sucker, I give in to the pain and cry to my mother. I see so many of my lupie sisters working and doing things for their families and here I am at home day to day literally scared to go out and with no motivation and I blame lupus. I have let lupus hold me hostage and it’s gotten comfortable. I’ve spoken of this previously but I am going to a therapist. I have been motivated because I want to live a more social life and be around people. My parents and sister are extremely supportive of me seeking help. I am excited for my future once I begin to learn how to deal with certain issues that arise in my life. I tend to surrender easily and blame everything on lupus. I feel meditation may help me in getting through the painful flares that come with lupus, that at times seem to never end, even with pain medication. I ask that anyone reading this to whomever you pray to or worship prayer for me.
It’s times like this that I wish I had a man in my life that was there for me whenever I needed him. I say this because I have been up all night and I wish I had someone to talk me through the pain. I have my parents but they like everyone else that is normal is asleep at 3:23am. My sister also is sleeping peacefully as she has to go to work in the morning. I would hope that if I did have a man in my life he too would be sleeping because of his six figure job he had to report to but, would wake up at the drop of a hat if I called. Insomnia has been a bigger issue for me lately because of my chemo treatments for my kidneys. It’s something that I know I have to go through and insomnia, on the big scheme of things is a mild side effect that will eventually go away. Well, it actually may not because it’s also a side effect of several meds that I am on but, hasn’t effected me as frequently as the cytoxan infusions has caused. On another note, I was playing phone tag with a therapist that my PCP referred me to and I gave up. It’s been about s week so I’m going to try again this week. I hate to beat a dead horse and because of my brain fog from lupus I can’t remember if I mentioned this in previous posts. As I type this I haven’t titled it yet because I do believe I am all over the place, which is nothing new. I love to write and I have been told by a journalist that I truly have skills but I have no knowledge of structure in how to properly write, I’m not sure if that is even the proper wording. I have always thought that writing is my passion but, in dealing with lupus it is a chore more than something I enjoy and look forward to. I was writing a book loosely based on my life years ago and it was really good. I had portions written and portions on disk, yes, a floppy disk. That shows how long ago it was. I have no idea where it is, but I truly believe if I thought long enough I could get it back and make it even better now that I have been through so much more in my life. I recently started a second book that is completely fiction, I had it all over, in notebooks my phone and computer, well something happened with my phone and I lost a huge portion of the story. It was so new in my head that it’s not possible for me to remember what I’ve lost. If I wanted to continue this story I would have to basically start over. Even if I were to complete a book, I have no idea what to do with it. Would I have to put out money in order to possibly make money? I have no idea. I recently read a book written by Jen Arnold and Bill Klein of The Little Couple, a TV show on TLC. Because of her career as a doctor and his background as a business man I expected a lot more. I could have written this book. The story, which was of their lives individually as kids growing up was fascinating but the way it was told was very underwhelming and disappointing. I assume because of their popularity it is a best seller. I was also surprised to find out that it was co written by a well knowN publishing company. I think if people would want to read about their lives why not mine, but I don’t have a reality show. I am an unknown person to the public. I would have to have some sort of marketing strategy to become relevant. I am currently only getting disability and it’s extremely hard to live off of, my sister and her husband live with me at the moment and pay me rent and that is what is sustaining me. Once they move out, it will be extremely tight. I do have good days but not enough that any company would feel confident in hiring me. I am not consistent and not reliable. This is so hard for me to admit but having lupus makes it that way. On many occasions I have cancelled on family and friends because of an unexpected flare of lupus. Family understands and unfortunately not all friends do and I have lost some because of it. One friend in particular, who meant a lot to me, in my opinion, criticized me at an extremely low time in my life. I do think in her mind she was encouraging me but her words cut me where I was already wounded and I have never healed from it and she has never contacted me again. I always thought there was hope for our relationship but earlier this summer my sister and I were both in the hospital and she visited my sister and not me. I can’t tell you how badly I was hurt, my sister told me that she didn’t visit me because she didn’t know where we stood or what to say. From my perspective a hug would have been a good start and we could have gone from there. I guess I expect people to do what I would do and there is no way I would not have not visited her had she been in the hospital. I do miss her but I do feel this friendship is over, we had been friends since we were 13 years old and I am now 41 and she will be October 11. She is honestly the only friendship I’ve lost, not that I had so many friends to begin with but, despite becoming a hermit and losing my social butterfly status, they have kept in contact with me, encouraging me with cards, text messages, emails. They have never given up on me and have chosen to let me take the lead and meet me where I am instead of wanting me to be where they are. They have stopped inviting me out because I would always cancel and I must admit it wasn’t because I was ill on all occasions. I became comfortable with staying at home. I even became fearful of going out so I stopped, I feared the way people would look at me and was so insecure about my weight gain and the fullness of my face due to the steroids. Dinner, movies, parties were all a no go for me, these things became a chore for me to do instead of a pleasure. This is where I presently am in my life. I know I have friends that love me and they have tried to sneak through my sister to get me out of the house but, she knew it could have negative effect on me and discouraged them and they understood. I keep all of their cards and notes that they have written as encouragement but, I’m still in this place of wanting to be in isolation. My life is relatively sad and it should not be. I think I have written about the therapist in a previous post, I am so sorry that I repeat myself on many occasions but it’s the brain fog and it’s not just in my writing entries it’s in life as well. I now know what the title will be for this entry. It’s now 4:28am and I have so many ideas running through my head about a book it’s crazy. I need to take advantage of this creativity. Thanks and be blessed.
its day 3 and the pain is continuing along with the depression. I gave cried so much the last 3 days it’s ridiculous. I am trying to dwell on what I have and my blessings but it very difficult when you are in pain while doing this. My mom came over yesterday to cook and I snapped at her and I promise you I didn’t mean to but this is a pattern for me. I mistreat those around me that are helping me. I am not sure why, I think it could be because I’m frustrated that I can’t do for myself and need help, who knows. I am working on this and taking deep breaths and telling myself that my mom or dad don’t have to do what they are doing to help me and to be thankful and not dwell on minor insignificant things. I thought I was getting better until yesterday. Last night was really bad and my parents were willing to come and get me and my pup to stay with them but that made me even more depressed that this is what my life has come to. I am so thankful to have my parents still when so many don’t but to have to depend on them depresses me. I feel like I’m whining or am ungrateful or maybe even acting like a baby with these feelings. I’m so conflicted and another issue is getting out of the house. I used to be the social “butterfly” of my group of friends. I enjoyed everything about going out and socializing. I went on at least 3 times a week. I loved this life and I was also working PT, so I had interaction with people on a daily basis. Since getting disability this has changed and I only leave the house for doctor appointments or lab work. It’s as if I literally can’t go out, it’s scary to me. I am laying here doped up because of pain medicine I need to keep the pain at bay but this is an unfortunate side effect. This also is another reason that I’m unable to go out often because folks would think this chick is high as hell. It’s kind of embarrassing. Another issue now is my insulin. I have to testy sugar before every meal and based on what it reads give myself a shot accordingly. At a table in a restaurant is not acceptable. I can barely keep my eyes open, until next time…….& no spell or error check💜
A woman that I knew as a child after feeling ill for about a week passed away. This is hitting me surprisingly hard, but one thing she said upon hearing that she had a few days to live was simply that she accepted it and it was her time to go. We must appreciate each second of our lives for we may never know when we are living our last week.
For some reason my past has been on my mind alot lately. I will admit recently I did see an ex of mine in the mall and literally hid so that he wouldn’t see me. So immature but, it’s what I felt I had to do. I am so uncomfortable with myself these days that I literally don’t want to be seen. I stay in as much as possible and only go out when absolutely necessary. So obviously no dating or social life at all. But, even though I have always seen myself married, I have no desire to date or go through the whole dating process. At 38, I guess I have given up on meeting a man that I will call my husband. I look around and women my age are independent, career minded, financially secure, focused and established. I, on the other hand am not independent nor am I career minded or established. I am however very focused and on my way to being financially independent. But, one thing remains, a chronic illness called lupus. For the most part most men aren’t jumping at a chance to date a women with an illness that drains her of her energy and more so than not needs help getting around. I just don’t want to compete with what’s out there, it’s a losing battle. I can’t tell you the last time I wore heels or a dress. Dressing up for me is a pair of slacks and a loose fitting blouse and crocs, yes crocs, along with lupus I suffer from a number of other medical problems and unfortunately my ankles swell and only crocs can accommodate the swelling, sexy right. Honestly, I have accepted that this is my life and the thing is I am alone but, I am not lonely and that is a blessing. I have family around me and family far away that let me know they are there for me always. Does it bother me that the majority of everyone I went to high school and college with are married with children…it used to but, their lives are theirs and not mine to have, at least not now. I used to think that happiness was gadged on whether or not you married well and the number of kids you have. That changed for me when I was in a hospital and got test results negative for colon cancer, now that is happyness!!! Being ill has made me look and approach life in a different way. What I need to feel complete is extremely different from what I thought 10 years ago. I used to always say a prayer for my husband wherever he may be at that time in his life and pray that our paths were closer to crossing. I don’t say that any longer, me, Erika, is in my prayers, my health and well being, remaining positive despite what can and will be thrown at me and the pain I have to endure. God knows the desires of my heart, I will work on me and be the best me that I can and I truly believe everything else that is meant to be will be.
So, I am a nice, honest, caring, compassionate, giving, hardworking, loving, a christian, would honestly, despite my body issues, give someone the shirt off my back. But tonight had an in depth conversation with my sister about heaven and hell and where we are going to ultimately spend eternity. I, honestly, because of what I listed first and foremost in this blog, thought I was a shoe in, but am I?? What truly does it take to get an invite to the ultimate party? I actually don’t know, but I think it’s alot more than what I listed. I am all of those things, but, I am not living the life that God has given me to the fullest. Does that piss him off? I definately don’t want to do that. Am I wasting the most precious gift he has given to me, life? I can remember taking weeks to pick out a gift for a close friend, I knew it was something that she would cherish and she showed such appreciation when she opened it. Months later while visiting her home she asked me to get something out of the cabinet and right in front of my eyes was the gift still in the gift bag tucked away. My heart sank, is that how God feels with those of us that simply waste the gift of LIFE?? Tonight I have realized that I want to go to heaven but, more importantly, I want to please God and I want him to be proud of me. It may sound corny, but it’s how I break it down for my simple mind to understand. I have started to read the bible, cover to cover and it is difficult. It’s alot of begating and names and I want to get to reading scriptures that teach me things and help me with day to day life. So, my sissy, with all her wisdom, suggested I start with The New Testament instead. At the end of the day, I don’t just want to say that I read the bible, I want to know the bible and know Him because I don’t want His heart to sink.
“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.