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💜
sitting here at 5:03 am and having been up since 3:30 am I’m having so many thoughts. I woke up in pain, as usual, and took my meds and they are finally taking affect. It’s funny because sometimes they work within 15 minutes and sometimes it takes close to 2 hours, which sucks. Having insomnia makes it worse because I’m not sleeping through it. I had a really bad day yesterday and it’s spilling over into today. I’ve cried much you would think my ducts would be dry. I want to be positive and dwell on the pros in my life but when you believe the cons outweigh them that is where your mind goes or at least mine does. I think dealing with chronic pain doesn’t help either. In some instances you can put negative thoughts in a box and keep them there and focus on other things, but when you are in pain and that is at the top of your list of cons it’s very difficult to do that. I want to work on this aspect of my life and hopefully it will dwindle down to others. I have chosen to not focus on things that are hopes and dreams and maintain my attention on things that are going to benefit me and my life. I am lonely, I have alienated my friends and I was thinking yesterday in one of my having pity moment that if I died no one but family would come to my funeral. It’s been at least 10 years since I have been withy friends socially. There is the occasional text or response to a Facebook post but nothing more. I see them going out and getting together and not one invite to me. It’s my fault I have set myself up for this by allowing lupus to take over my life. The problem is now that I have done this I have no idea how to get my life back. I’m sure I have written about this in a prior post but with lupus brain, please be patient with me. Lupus brain is basically, having short term and long term memory loss. It’s not all of the time but it happens enough to affect your life. I have also started suffering from migraines which is a pain that is almost unbearable at times. So medication #27 is added to my list. Also an insulin has been added because of the increase in my sugar due to an increase in another medication. I’m already a diabetic so I take insulin already but now require a fast acting insulin so I’m giving myself shots 4x a day. I know others go through so much more but this sucks. I tend to ramble in speech and in typing it seems. I just heard my puppy jingle his chain, Lord I hope he was just repositioning himself we will soon see if I start hearing a soft bark or little huff and puff he makes to get my attention to go out. I love him dearly and getting him was the best thing I could have ever done. He allows me to rest and we sleep a lot but that is what dogs do and fortunately for me it fits right in with my lifestyle. He’s also little and even though he does LOVE the outside he doesn’t require a lot of walking or exercise. But fortunate for me my parents are very active and he spends time with them and runs and runs for hours in their back yard and he loves it. I’m rambling, I shouldn’t even post this but I will and maybe it will touch someone in a positive way. I’m not checking for errors, I’m human so don’t judge me…lol.
Well well well. Where have I been? No damn where…lol. It is 1:03 am and I was just scared out of my mind because my sensor for my security system went off. So I will be wide awake for awhile I am sure. Nothing is really going on in my life exciting. I did go out for the first time in over a year. Hold the applause please. It was a rather nice affair with my sister and brother in law. I was a third wheel unfortunately. I was supposed to have a date but because of my own error it didn’t work out. I have since asked this gentleman out on a date and he accepted but has yet to call me back. ( I think we can all see how this will end) still single and hating it. I try to tell myself that being single is ok, I don’t need a man to complete me or make me happy and I do truly believe this, the thing that is hard to accept is giving up on it because it isn’t happening. I feel so deeply in my heart that I am meant to be a wife that I can’t let that notion go. I also understand that to be a wife I must first be a friend, then a girlfriend, and finally a fiancé. I do get this and I know I have to date but, I despise dating, it seems so fake and set up so unnatural. The man that my sister invited to the outing is a friend of my brother in law that he used to work with before his stroke in 2013. They hadn’t kept in touch and he had actually stopped working at the company but came back and was looking for Skip, my brother in law, he was told about his stroke. He reached out to my sister and began visiting Skip while he was recovering. Soon after my sister, brother in law and myself moved in together. His visits continued to our home. The first time I met him, honestly I wasn’t all that impressed but he seemed extremely nice and that was so refreshing to see when it came to Skip. He truly cared about Skip and wanted to help him in anyway he could. My sister truly appreciated this about him. He came over a few times and I normally wouldn’t visit with them because he was there to see Skip but one day he made known that he had a litter of puppies that he would be selling and of course I was interested in getting one. He wanted $500, which was way out of my budget so I let that dream go. One day he came over and brought two of the puppies and I was having a really bad lupus day and literally cried when I saw them and they licked my tears from my face, needless to say I was in love. I went downstairs to visit and really just see the pups and he and I had our first back and forth conversation, I have to admit he was very attractive, something I hadn’t seen before. Also, very intelligent, funny, laid back, pretty much my type of guy except for skin color, although he is black he is a high yellow complexion, which is not my preference. Most of the conversation was based on the pups and he and my sister talked about the school system in which they both work. After that visit I inquired on the pups from time to time and he lowered he price to $350, still a little high for me. Then one day he asked if I still was interested and I said yes, how much and he said on the house, you can have him. My heart melted at the thought of getting my own little fur baby. I thought his generosity was so great I couldn’t stand it. I think I offered to cook for him or do something and he said no not necessary. He brought the pup and all of his paperwork up to that point and some food as well. Maybe a few weeks after that we texted about Reece and how he was doing and asking for advice on potty training. He was very helpful in that respect. I, honestly expected him to ask me out, I felt chemistry but I must have been off because he never asked me. Then an event being sponsored by an organization that my girlfriend is president was having an affair and I wanted to go and so did my sister and brother in law so we planned to go, my sister thought, why don’t we invite Skip’s friend to go, that is cool with me so I wouldn’t be the 3rd wheel. So I sent him the information and asked if he would like to go. He called and asked a few questions and said yes, he would like to go. I told him I would call him in a few days to set up a time on the day of the event to pick us up and he agreed. That day came and I called and left a message on what I thought was his voicemail and he never called me back. On Friday, the day of the event he called and said, “what happened to my phone call”, I was shocked because I had called and then I thought, here we go again, same game, different guy, different day. I absolutely didn’t believe him and instantly was turned off. By not hearing from me he scheduled to work hours at his second job. Looking back now, I truly believe I called the wrong#. He told me that he would come by maybe over the weekend to see Skip and see how Reece had grown, he never did. A few weeks later I was talking to my sister and she said call him and ask him out. I have never in my life asked a guy out and at 40 I wasn’t going to start now, my fear of rejection had set in. But being a tad bit high on Percocet and ambien I called and got his voicemail and the message I left went a little something like this:
“Hi __________, this is Erika, I don’t know your status or if you have a girlfriend but I was wondering if you would like to go out sometime? Well, that is all give me a call”
Within 5 minutes he called back, our conversation went as follows:
“Hey Erika, this is _________, I see you called I missed it! what’s up? Me: you didn’t listen to my message? Him: No I am at work. SHIT!!! Now I have to ask him out again. I just said verbatim what I left on the voicemail as if I had written it down. But he had a few things to say. First, he said, I am to old to date. I am thinking I knew this was a mistake , he isn’t interested in me at all. So I said, how old are you? 50 he said, that isn’t to old to date I said back. Then he asked how old I was, I told him 40, he was a little quiet and said ohhhh ok, yeah sure we can do that. He was in the process of closing his store to I told him to give me a call and he said he would and I haven’t heard from him. I am not holding my breath for him to call, it would be nice but I’ve been rejected before so that is nothing new. I regretted asking him out initially but then I felt really good to have done it, I felt like I put on my big girl panties and went after what I wanted. So this is to be continued on this dating front for now. Peace.
I haven’t had many relationships in my life. But I must say that the ones I have had have been to great guys. In high school, college, after college, and into adulthood. One thing that is the common denominator is me and my drama filled personality in all of the relationships. This most probably led to the demise of each one. With social media, Facebook, Instagram, I get to see how they have moved on and are all happily married. It saddens me to an extent that I have never had a man get on his knee and want to spend the rest of their life with me at 40 years old. I have friends that have been married 3x, what did they do to get 3 men to propose, when at this point I can’t pay a man to take me out. I am getting to a point to where I am over it. I know that my life is as a single woman with no children. It used to make me sad, but now it doesn’t and that is because I have accepted it. I go through a lot on a daily basis and to expect a man to fit into my life will be difficult. I am not an active person because of my health, I am sick a lot and this isn’t a person that men are lining up to be with. My looks have faded as I have gotten older so it is what it is. I am scarred all over my body from surgeries, procedures, picc lines, ivs, and side effects of medicines that make me bruise so easily it looks as though I am in a physical fight on a regular basis. This isn’t meant to be a sad or negative post. It is honest. I am beyond blessed with what I have in this life and I am content with that. I used to think that my life couldn’t be complete without a husband and kids to call my own. I now know that is not true. I see what my ex’s have and I wish them the best but, that is their life not mine. I see my classmates with husbands and children but once again their life not mine. God has given me so much more than I need and at one time it wasn’t enough because it wasn’t what I thought I needed. What I have is enough, more than enough and I am grateful. Yes, every single man that I have ever dated is married with children and that is fine for them and I hope they all are very happy. My life is my life and is for me. It took me a long time to get to this place but I am so glad and proud of myself that I am here now.
I look at celebrities ok, I am not going to lie, specifically, Kim K and I wish I had her circumstances. Let me clarify, I would not want to go out and be photographed everyday and have to feel as though I have to look perfect all of the time. I want the perfection of getting and having everything you want. I assume she works hard. She has businesses but the reward of the life she leads is what I wish for. All the millions is not necessary but to not wonder how mortgage and medical bills, and just everyday expenses is what I want. I guess I look at her because she seems to not have a care in the world. She seems to come from a lovely family and now a husband and a child. She travels all over the world and has the best of the best, in my opinion. I am sure she has her issues, but to me all of my issues stem from not being able to pay for what I need, not want, but need. I don’t play the lottery or gamble but I feel as though I will have what I need one way or another, I have faith. I guess I envy her life to some degree, but my life is my life and to want someone else’s is showing that I am not grateful for the life God has given me. My life has made me who I am, as hers has made her who she is. There are things that I would never do and there are things that she would. Maybe that is why I am where I am. But I am proud of what I have chosen to do and not do in my life. I wonder if she would say the same.
June 25, 2014, 11pm, just out of the bath and drying off, when all of a sudden, chest pains. I sit on my bed and take deep breaths, which is difficult. To give a little history, in 2006, I had chest pains that I brushed off for a couple of months, but eventually led me to the hospital in surgery to get a heart stent to my Prox LAD, otherwise known as the widow maker. It was 99% blocked. All of this was a result of my lupus. Ok back to June 25, on my bed not sure what to do. I texted my sis to come up to me. We talked and I told her what I was feeling. Without hesitation, she said you have a heart stent, you need to go to the hospital. Without a thought I called my parents and we were off to the ER. Chest pains gets you taken back right away, so that was nice. An EKG was done and it was normal, I do believe, but I was taken back to a bed. A doctor came right in and went over my history, which is extensive, and went over my symptoms. I was told that I would be admitted to be observed overnight and would probably be released in the morning. The next morning I had a stress test, but with medication, because I am still recovering from foot surgery and couldn’t walk on the treadmill. The results were not normal. So later on that day, the cardiologist came in and let me know that because of my previous stent, they wanted to make sure it was still doing it’s job. So another angioplasty would be done. I called my mom and my sister. Unfortunately, my sister and I had an argument and I abruptly got off the phone. I went to the bathroom and the nurses came in the room to take me for my surgery. While being wheeled out, my room phone was ringing, I knew exactly who it was, my sister calling to apologize. I so wanted to speak to her, just in case surgery didn’t go well, but it was too late. Once I got to the surgery cath lab. I saw my mom, I told her to please call Angie and tell her I am sorry and I love her, when she called her, she had the exact same message for me. So the nurses were running back and forth to give me her message and to let me know she got mine. I ended up needing a 2nd heart stent, in an less major artery but it was also 99% blocked. My post back in May was knowing the difference between life and health and not choosing death. This was my body telling me something was not right and I listened. But because it snuck up so quick and left just as quick, I was going to just wait and call the doctor another day, what a mistake that would have been. My sister told me to go and I went. I am so grateful for her being here that night. She most probably saved my life.
I guess we aren’t supposed to ask why, when we are handed a situation in our lives. It is so hard not to, but I think it’s ok to wonder. In 2011, after tearing my acl in my right knee, I was fired after 15 years of employment with my company. Thereafter had 3 additional surgeries on that knee and I am finally back almost 100%. Just when all seems well and getting back to normal I rupture a tendon in my left foot that needs surgery or will get progressively worse over time. In addition to all of this, I am being told by my gynecologist that a hysterectomy is in my near future due to lupus. Now this is hard to swallow, not that I want children, but at 40 years young, I thought my equipment would stay in place for a bit longer. I have always heard that you are never given more than you can handle in this life. I wonder, as months go by, and more things are added to my medical plate, I wonder, but I don’t ask why, because that response is always, why not!
Life is NOT funny. I am seriously not laughing. I am going to be 40 on April 2nd and I have been working on getting my credit together to purchase my first home. Everything looked great, had approval, down payment, everything covered. But LUPUS, had to have its say. I deal with this so there are few
surprises but this was completely unexpected. I take 14 pills a day and insulin. This is my first year on Medicare and thankfully meds copays labs tests are very reasonable. So to move forward with purchasing a home was a go. But then a notice in the mail changes everything. My insulin will be increasing from 45$ to 265$ a month. As it turns out, my meds are in stages and once you pay a certain amount you move to the next stage, in which I pay 72% and Medicare pays 28%, in the present stage it is just the reverse. So this will obviously cause me to not be able to pay monthly expenses. I feel so defeated and I cryed, well I actually sobbed, but once I dried my eyes and was comforted I know it will work out. I may not get my home this year, but I will own a home. It is so odd, every time I make efforts towards either buying or renting my plans are blocked. I am believing God is setting me up for a HUGE blessing. That thought helps me remain positive. Whether it does or not, he has a plan for me and my life.
Tomorrow is another surgery for me. This will be my third on my knee. I am having more problems because of my chronic illness and medications that cause me to not heal like your average bear. But it is cool, it is my life and I’ve learned to roll with the punches. I have constant support from my family and my close girlfriends are always awesome. Especially my lupie sister, Stacey, she is almost an extension of me because we go through alot of the same issues. I am nervous, I am not going to lie, but it is in God’s hands, the best hands. I haven’t written in awhile, I really don’t know why, I really haven’t felt inspired or motivated. My life is headed in a different direction. I am able to do things that I never dreamed of and it’s exciting. Still dealing with lupus everyday dampers it just a bit, but I am learning to really appreciate my good days. It is a process but I am coming along. I feel as though God is handing me a new life on a platter with a note stating “What are you going to do with it”? My cousin, Keith, recently died and he suffered an accident years ago that unfortunately ended his marriage, his career, and ultimately his life. But while he lived he truly lived. We were not close but we had a connection that I believe we both felt. I mention him because, I want to live my life because he can’t, I am here and he isn’t. There is a reason for that. I had no clue this post was going to go in this direction, but I type as I feel. Wherever my mind goes is where my fingers go. Some people don’t understand blogs and writing online and sharing with others. I try to explain in this way. For me, I am unable to get out and socialize alot and this is my way of keeping that part of my life alive. And I love to write and it is therapy for me. What I do is not for everyone to get and I don’t get what others choose to do. We all simply do what makes us happy and makes us feel good and hopefully have no regrets. Well, maybe a few regrets that at least we can live with.