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.
It’s really been a while since I’ve written so here goes. i don’t even know where i left off but i will just begin where i am now. June 1 i had surgery, the pathology results came back verifying that i have cancer. i actually was expecting it because i had a similar growth removed and it was cancer. the difference is the location of this growth requires chemotherapy or radiation to completely get rid of the cancer. but, due to my kidney disease, chemo is risky while radiation is not. at the same time chemo is more effective and in most cases cures this type of cancer. i will see my oncologist on June 5 to go over all of this, depending on his opinion i will move forward. i may even get a second opinion at the center for cancer treatment in Atlanta. with my lupus, kidney disease, coronary artery disease, anemia, chronic pancreatitis and colon ulcers my case may be a little bit more complex than the norm. it’s scary because it’s unknown but, I’ll get thru it and honestly i see this as an extended detour that i have to take before getting back onto the main road… lol! (gotta bring laughter into the mix) my family says, you’ve been thru so much and you are so strong, i don’t really see that. i feel defeated and beaten up like an abused woman. the other day i was thinking about the fact that i have 3 medical conditions that could end my life; lupus, renal failure and cancer, it took me aback for a second and then put me in the mindset of a fighter and a survivor. i have no choice, my aunt told me a positive outlook can be the difference between surviving and not. Wait, What?!?!??????)
May 16th, the Cleveland Clinic. Purpose: to get a second opinion on my failing kidneys. Dr Wong, young, handsome, witty, extremely intelligent, and very impressive. It was a trip well worth the 8 hours. Since I have been a child, I have loved road trips, especially family trips. Even though my sis was absent, I loved the time with my parents in the car with my pillows and blanket cuddled in the back and them in the front. It takes me back to my childhood and I love it. We will be returning Wednesday for my biopsy. I’m not looking forward to the procedure itself but, the trip up and down, absolutely. At times I wish I was still a child, I wish I could do my life all over. High school, college, my professional life absolutely everything, in order to have a different outcome. To be an achiever, someone that makes her parents proud and doesn’t fail at every single thing in life, including maintaining reasonably good health. I just can’t get anything right.! I feel like a failure all of the time. My family tells me I’m not but of course I don’t see it that way at all. I’m jumping all around in this post by the way. I’m writing this from a hospital bed, my body is falling apart and I don’t know what to do, the docs don’t know what to do, it’s scary. To hear the words “our backs are up against the wall” as far as treatments go for improving my health is definitely scary but, it’s my reality at this moment and I’m going to roll with it until the tires fall off. I’ve gotten some good news while in the hospital, my creatinine, which is the waste that should not be in your kidneys has decreased since I’ve been here, so that is very good news. Mind you the level should be under 1.1 and my GREAT low level is 3.4 but, we are rolling with it. The funny thing is I’m happy or should I say, I feel a need to be happy and put myself in extremely pleasant situations. I’ve told my mom and sister I want to go out, besides docs appointments, I laughed and told my sis I want to lunch, I want to be a “luncher” lol! My mom and I went to lunch the other day and I loved it, we sat and ate and talked and people watched and I had the time of my life. To eat out isn’t the healthiest choice of cuisine all of the time but to limit yourself to grilled meat on lettuce is a winner every time. It’s 1:01am Thursday and I’m hoping I’ll get out today, if I do my sis and I will go to dinner Friday for a makeup bday.! We haven’t had a sissy date in so long and I’m really excited. I need to go to sleep so the morning will come and I can, fingers crossed, eat regular food for breakfast or lunch and be home by 5pm!!! It’s so funny I’ve been at this hospital so many times I know my favorite meal to order. Grilled chicken sandwich with lettuce tomato pickles onion baked fries garden salad a milk and dessert (gotta have the milk bc the fries are spicy). And I’m excited to be eating it tomorrow, yep, I’m claiming it. It will be on a tray in my face maybe even for breakfast…lol!!! I’m finished for now. I hope all are well and beginning to enjoy Summer, wherever you are!
I am not even going to lie, as I lay here in pain from lupus and a throbbing headache. I scroll through IG and see all of the couples celebrating Valentines and I so desire to be in love. With my recent more serious health battles I wonder if I will ever experience love at all. Will I ever hear the words, I love you from a man that truly does. Or will I be asked the question that most women dream of, will you make me the happiest man alive and be my wife? I’ve always wondered what a woman does to get a man to fall that deeply in love with her. Because I’ve never been able to do it. I have a girlfriend that is on her 3rd marriage and in my mind she has gotten 3 men to go to a jewelry store with her in mind and pick out a ring to ask that question. How did she do this? Granted the first 2 didn’t last but that isn’t my point at the moment. I hope it’s in my future, it’s not that I feel as though I don’t have as much time because of my condition but, it’s like my time is running out because of my age. I believe I will be healed in the name of Jesus. I have been reading scriptures that have opened my eyes magnificently to this fact and I will hold fast to this belief. My health far outweighs falling in love and that is my focus, my thought is when put in a situation as in bad health you begin to think of everything that you never accomplished or things that you desired and never obtained. It’s almost as if it maybe to late but, that is the devil trying to tell you that your end is near and accept it and I won’t do that. I won’t allow him to gain entrance into my mind and convince me otherwise. I’m here and I’m here to stay, if I fall in love or not, I’m going to here to live a long and full life. He’s not done with me yet. I haven’t gotten a chance to live out the second part or the best part of my life. I have so much to see and so much to do and accomplish, it’s simply not over yet. He said that every cell, tissue, organ,and system in my body, as well as every thought in my mind and heart lines up with Isaiah 53:5 “by Jesus’ stripes I am healed. I don’t judge how well I am, by the sight of my eyes or by the feelings in my body, “For I walk by faith, not by sight” II Corinthians 5:7. This is what I hold onto and this is what will be my strength to pull me through this. He is with me during this battle and he will never leave my side. So for this reason He is my Valentine, I need or want no other, he has shown me love, devotion, stability, empathy, sympathy, compassion, a shoulder to cry on, and simply been there when I didn’t even realize I needed Him to be. God is LOVE. AMEN.
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.
Hello all, I hope everyone is doing well. I have some not so good news to report about my health. I do state I have lupus but rarely get into specifics of the disease. I have had issues with my kidneys for years but with a hospital stay and fluids they always recover. Well,my doctors have found that protein is spilling into my kidneys and it’s toxic. My kidney function is normally 60% and I’m at 30% now and with the toxin it will not bounce back. The 2 meds that are used to treat this condition have not worked for me. In my doctors words, our backs are up against the wall. This is not what I want to hear. Our next step is to triple my steroids and for me to get what is called “a blast” if high dose IV steroids for 3 consecutive days. Once I go back to the doctor in April if the level of protein hasn’t changed we must look at options of transplant. It’s funny because my doctor did not bring up transplant I did, that is why I love him he doesn’t want to anticipate it not working or getting me worked up on the possibility of it not working. I also asked a question in reference to treatment. If lupus is taken off the table and a person has toxic protein spilling into their kidneys are there treatments that they get that can be tried on me. He’s looking into this option as well. My family is so positive and trying to keep me up as well. But the fears and doubts creep in and I’m so so scared. If you have read this and you believe in the power of prayer, please pray for me and my healing. Thank you and God bless.
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.
After sending my primary doc a message that I had been having hot flashes my title was his response. I then responded “you have to be kidding me”. At 41, but I have heard of women going through it in their 20’s. I go through a lot with lupus, coronary artery disease, chronic kidney disease, anemia, ulcers on my colon, and numerous side effects from medications. But this was one thing that I thought would not happen until much later in my life. I have never been married and have no children and honestly I’ve never wanted children but this occurrence is still affecting me in an unexpected way. I have had abnormal Pap smears for years and followed by biopsies, colposcopies, and several LEEP procedures (if you aren’t familiar, google it). In a nutshell, every time I’ve gone to the gyno for the past 10+ years I’ve had to have at least 2 additional procedures because of abnormalities and over time statistically it will become cancerous. I was expecting to get a hysterectomy in 2016, but menopause beat me to the punch. Unfortunately, despite my body doing this I still will have to undergo the hysterectomy to assure that I will not develop cancer later on. I’m on board with this 100%. But putting menopause in the mix wasn’t expected and is surprisingly saddening me. I am emotional on all levels, but I am also realistic with what hand God has given me. Some days it’s hard to accept and those are really bad days but they are moments that I somehow survive even though I feel as though it’s going to kill me because it hurts so bad. I went to my nephrologist today and we were going over my labs and my condition, despite changing medications isn’t improving but, good news it isn’t getting worse. I then told him about my recent bout with shingles for the 3rd time and that I am going through menopause. He looked at me and said “my darling, you simply can’t catch a break” it was so funny coming from a little Indian man with a deep accent. So I will be getting tested the end of this month to solidify that I am in fact going through menopause and once that is verified I will go ahead and schedule my hysterectomy. I hear some women say they feel less than a woman after menopause or the surgery. I don’t feel that way. Once a month I have the most unpleasant experience that lasts 7 days and I am looking forward to no longer having aunt flo visit, sorry if that is a little to much info but, it is what it is. This whole thing is hitting me hard and I will have to take some time to adjust and accept. That is my life, I’m thrown medical issues at every turn of life and I just roll with it. As most folks drive along a straight path with dips and highs and lows here and there. I not only deal with the dips and the highs and lows but I also have to take many detours along the way and I feel as though I can’t catch up to my counterparts ever. It was at my employer when I worked and those that I trained surpassed me. Not only was it difficult to keep up because of my illness but, depression set in watching those around me get promoted and my job performance suffered from that as well. I am going way off topic here. So I’m done . I wish you all the best.
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💜