Faces of lupus

  
Really no words. Bottom left is me at this moment in my PJs. Lupus sucks. Steroids really suck.

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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.

How things change

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.