Memorial Day

I am drawing a blank and that is pretty sad as an American. My dad is a veteran but, I thought memorial meant to memorialize and my dad is alive and well ( knocking on wood). My grandfather served and he’s passed away so I celebrate him today along with my Uncle Snap and Uncle LC.

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Huh???

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!

Surprise Birthday party!!!

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.

Pain pain go away and come back….uhhhhhh….never!

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.

He’s my Valentine

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.

My last IV treatment 

I only had 3 treatments but, the affects that the 2 nurses had on me will help me be forever changed. They cared for me as if I was a member of their own families. Their smiles lit me up every single day I arrived. I must insert, that they were also my nurses when I had my chemo treatments back in March until September. Nurses are very special people. They choose to take care of compete strangers and if they truly love what they do, that love is contagious to those they care for. Kathy and Debbie are two of these people. In my eyes, they are angels on earth. I thank them both forever and even though I don’t want to see them again, I would love to at the same time. This is me with Kathy. 

 

Valentines Day

❤️I want everyone who has love to APPRECIATE it, NOURISH it, WATER it so it may grow. NEVER take it for granted or let others convince you that you are not worthy of it. For those of us that don’t have a physical person to love…AHHHHH but, we do, it is OURSELF. APPRECIATE yourself, NURTURE yourself, HYDRATE yourself so that you may grow into the complete person you are meant to be. NEVER let anyone take you for granted or convince you that you can do no better than them. God bless you all. Happy Valentines Day my Loves!❤️ #honestyIN2016-Eributterfly

First steroid IV treatment

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. 

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Today is the day

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.