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!
My birthday was April 2nd and I wasn’t feeling well at all but, I thought my sister had planned to get a hotel room and we have a sister slumber party. So when I wasn’t feeling well I felt it could just be cancelled. Little did I know, my friend that I had thrown the bridal shower for (previous post) had planned this party. My mom and sister decided to tell me to get me motivated to go and I did. Unfortunately, I couldn’t eat or drink anything for fear of pooping the entire party and having stomach cramps. It was lovely and I enjoyed myself so much and also paid for it that night. Lupus is so weird because all I did was literally sit on the couch with my legs elevated and I had the worst body aches that night that I almost had to go to the ER. I can barely move now and I can’t climb stairs because it feels like weights are on my ankles and I’m carrying a load on my back. I’ve never felt this way before, my doctors are telling me it’s because of the “blast” of 1500mg of steroids I got about 2 months ago and it will be in my system for at least 4 more months. I hate feeling this way on a daily basis and it never lets up, it seems I get no relief and other body systems are also under attack, so to speak. I won’t get into specifics because it is really TMI. I cry often because of the pain and then pain from other parts of my body as well, it’s not fair, I hate this and I wonder, what have I done to deserve this. Did I mistreat someone and this is my karma? I haven’t been perfect but, who has in life. I look at folks that have done far worse things and are living the dream life. My mom thinks because she birthed me she gave me lupus and it’s her fault. I don’t believe that for a minute and then she tells me if I can’t believe that than my reasoning is just as ridiculous. We will never know why it’s happening, it just is and I have to deal with it as best as I can. To think I will be dealing with this disease my entire life is frightening. At 50, 60, 70, possibly 80, maybe by then I will be able to deal with the pain better than I do now, but what if not. I sometimes wonder what the suicide rate is for lupus patients. I have a low tolerance for pain but, my doctors tell me otherwise, they say I deal with the pain better than a lot of other patients, I feel I’m a wimp the way I cry and yell out in pain, asking God to give me strength because I can’t make it, it’s to much to deal with. I have my parents to comfort me now but they won’t be here in the future and lupus will. I wonder if I’ll make it without them. I find strength somehow to get through every flare but while I’m in it I don’t see the an end to the pain and I want to end it permanently. But, I tell myself it’s temporary and it will pass and it does and if it doesn’t to the ER I go. I also look at life as Gods greatest gift to us and I would never want to take my own, it’s like telling Him the gift isn’t good enough and handing it back. Also, I don’t want to disappoint Him. I live my life as well as possible and as a Christian aught to and I’m proud of that. I make mistakes but, I never harm others in the process. I was blessed to turn 42 and I look forward to many many more birthdays in the future. God bless.
I’m sitting here at 11:43pm waiting on my pain meds to kick in and watching John Wick, if you haven’t seen it and are a fan of action and a lot of guns plus Keanu Reeves look it up. I’ve always wondered why my meds kick in immediately sometimes and sometimes they just don’t. I guess my body maybe at a different balance or level of something that causes the meds to not absorb as quickly every single time. I wish I knew what it was so I could have everything in a line when it’s time to take them. I am having a surprise bridal shower for a friend on Saturday and I’m kind of excited because I haven’t seen my friends in awhile, one in particular in probably 6 or 7 years. I consider her one of my closest girlfriends but we just don’t see each other or really talk that often but, if I were to call her and need something she would be here for me in a heartbeat. I need advice on something, I may have mentioned in a previous post. Since becoming sick with lupus I have alienated myself from all of my friends. When I am sick or in the hospital none of them knows and therefore can’t visit. Now that I’m spending more time in the hospital and undergoing treatments I would like visitors. Should I ask them to visit me or call them when I’m in the hospital to let them know and then let them decide whether or not they will visit? I’m lost because I don’t want to come off as needy or begging but, I miss them and seeing them when I’m sick will lift my spirits. I’ve gone without them for so long and granted this is my doing and I want to reverse this. My mom told me if I make myself more present and frequent in their lives they will notice if they haven’t heard from me and therefore know something must be wrong. This makes sense. I also am going to tell them that I would like to start getting together at least once a month if their schedules allow. I’m really not a phone talker but to text frequently wouldn’t be an issue either. My health is so unpredictable and I never know from minute to minute how I’m going to feel, I cancel a lot and this is the most frustrating part of lupus. I have so many plans in my head and at times I can’t execute them. I will be constantly apologizing to them I am sure but,,I will do my best to push myself if plans have been made. I told myself even if I am flaring with a fever on Saturday, I am not cancelling this get together, I will just get medicated up wrapped in my favorite robe and be amongst the party. It actually seems that when I’m with someone talking and focusing on something else I deal with the flare a lot better. I guess this makes sense because your mind is on something else and not the pain. When alone all you think about is the pain you are in. Case in point, right now, alone and all I can think about is this pain. The typing is helping slightly but, not really. I wish I could call my mom but it’s to late and she has an early appointment before we go out to get everything for my party tomorrow. She came over here today and completely cleaned my bathroom for me. She has dusted my furniture and cleaned my carpet and vacuumed. She’s also going to help me clean off my counters in my kitchen. I would think my sister would help me but, she’s busy with school and just life in general. I wanted to clean out my fridge because it is so unorganized, just in case my guests go in to get something but, I’ve decided to have an ice chest out with the drinks in it so there will be no need to go in the fridge at all. I am having sushi, cocktail shrimp, meatballs, chicken wings, pasta salad, a vegetable tray and cake with ice cream. Along with soda, water, wine and the brides favorite drink, Jack Daniels and 7UP. It should be fun, it’s a small group just 4 of us and we had a bet many years ago that Frances, the bride, should be married by a certain year and if her boyfriend at the time didn’t propose she should move on. I’m not sure if she signed the agreement or not but, I think she did. Needless to say it was well past the date on the paper that they finally got married. I’m sure the year was more than 10 years ago on the paper. This is hilarious to me and it will be brought up for sure. My fingers are cramping so I must stop or now. Be blessed.
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.
Today I faced a fear that I have with dealing with this disease, the increase of prednisone, the most common steroid for lupus treatment. It has several side effects, insomnia, nausea, weight gain, moo face appearance, hair loss, headaches, and high BP among many others. My IV was 500 mg, to put this in perspective, a high dose by mouth is anything over 20mg a day. My daily dose has been increased from 25mg a day to 60mg until the end of April. I’ve gained about 40lbs since March of 2015 and have not had a chance to lose any of it so far so I am praying that I have self discipline over the next few months to keep my weight under control. I am aware that the main issue should be saving my kidneys from failing and not how much weight I may or may not gain, but I guess I’m a bit vain in that aspect. I am completely aware of what impact this medicine will have on my overall life expectancy and I will do whatever it takes to live the fullest life possible. I will have 2 more days of 500 mg of steroids and that will be it, I felt out of sorts after the treatment and had a metallic type taste in my mouth that subsided quickly. It wasn’t bad at all. I hope I’m able to have a good nights rest. I also had an issue with my BP when arriving, it was 240/124, this was a huge concern and it had been running high over the past few weeks but not nearly this high. It was taken a total of 3x and by the time I left it was 145/109, I went to my primary doc later in the day and he started me on an additional BP pill. I currently take 5 BP meds and they all have been increased to their capacity. I am having a major headache as I type but I can bare it. It was hilarious that on the new drug side effect the first thing listed was headache/pounding…lol, all I could do was laugh as I swallowed it. This is the beginning of a new journey for me that I hope ends very well for me. Here is a picture of me as I was getting my infusion today. God bless you all for following and joining me in this journey.
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.
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.