A Battle Against Me, Myself, and I

My nephrologist has not been happy with the progress, or lack of, in my protein levels found in my urine, so she has recommended increasing one of my strongest steroids, Prednisone to help kick start my new kidney medication. Prednisone is my least favourite of all my medications; it is the one that I experience the most side effects when on a high dose. We increased my dosage from 5mg/per day to 30 mg/per day, which I knew I would be experiencing a long list of side effects. These side effects include an increase in appetite, mood swings, fatigue, puffy face, acne, abdominal pain, and the list goes on.

I have been having a really difficult time coping with these side effects. I have put on some weight, especially in my face. I’ve got acne and feel like I’m sixteen again going through puberty. I feel moody and emotional all the time. I just don’t feel like myself. It makes me sad when I look in the mirror and am not happy with what and who I see. I don’t feel 100% there. It’s a constant battle with my meds, I take them to help my body, but then I don’t feel good mentally. I feel off. I lose my motivation, my energy, my drive to do things. I’m just ready to be back on my lower dose, and not experiencing such a mental struggle every day.

My nephrologist reassured me that in a few weeks we would start tapering my prednisone dose. That day could not come any sooner. As my prednisone dose gets lowered, the prevalence of the side effects will begin to fade as well, which is promising.

I just found out earlier this week that I have high cholesterol. This is something I honestly never thought I would ever have to worry about. High cholesterol does not run in my family and I eat pretty healthy day to day, especially considering I was vegan for almost 9 months- I was honestly stunned when my doctor told me. My nephrologist thought it would be good to do a cholesterol and blood sugar test now that my prednisone dose was very high, I had never done one before. She was expecting normal results because I am young and healthy. When she called with the results, she explained that it most likely was due to my kidney disease as that can affect cholesterol levels. She said that if I were a patient with no previous medical conditions, she wouldn’t be as hasty to start me on medications. But because I have lupus, the inflammation from lupus can perpetuate high cholesterol levels and can put patients at a much higher risk for atherosclerosis, which can lead to heart attacks and strokes. Also, the fact that I have never done a cholesterol test before was very concerning as we could not know for certain how long I have had high cholesterol for. I see my GP next week to discuss the plan of attack, I am hoping I can convince him to let me try some natural cholesterol lowering medications for a few months while following my progress, before prescribing me medication.

I am trying to stay positive and patient during this time. I know it’s just another bump along the way, another test. I just need to find that inner strength to persevere through. I know I am my toughest critique, people say they don’t notice the weight gain or my acne, but I do. It’s just hard staying motivated when I know I am not my best version of me right now.

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3 thoughts on “A Battle Against Me, Myself, and I

  1. Hey there friend,
    Sorry it’s been awhile since I’ve made it over to your awesome and amazing blog. As you know I’m trying to get my official diagnosis, still. I am being treated with Paquenil. I do think it is helping quite a bit. I totally understand what you say about Prednisone. I hate it, too. I doubt anyone likes that life saving poison. It’s a good drug because it is a “cure all” for just about anything. The side effects are horrific, I will not lie, but you are ONE OF THE MOST BEAUTIFUL SOULS I KNOW! I don’t like to hear you say those negative, and untrue things about yourself. I’m sorry that you now have high cholesterol, as well. I’ve struggled with that on and off for the past 10 years or so. I currently do not have it, but that can change at any moment. It’s most definitely not caused by my diet!!!!! It is very difficult to stay motivated when we are going through so much crap all the time. I’m struggling, but trying to not lose control, like I usually do. I’ve actually been making my daily goals, as instructed by one of my therapist’s, and achieving them for the past few days, MIRACULOUS! I don’t know what I’ll be doing tomorrow. Will I meet my goals, again? One day at a time. Today, I’m managing and I’m happy with my progress for today. I can’t waste today’s energy on worry about what tomorrow may or may not bring. Who said I will even be here tomorrow? Just a reality that we all have to face. I’m trying to make the best of each and every day that my eyes open. I know, I’m usually all over the place with this kind of thing, but I’m trying, and trying is good. I hope you don’t lose hope or stop being motivated. You are beautiful and very inspiring to me, and I’m sure you aren’t only inspiring me. I’ve learned a lot about Lupus and just being human, from you. Hang in there, girlfriend! You are one of the toughest cookies I’ve ever had the pleasure of getting to know. You got this! I’m here any time you want to talk, well as long as I’m here. LOL I’m trying to get it together and get back to being here daily, again. I hope to hear from you soon. xxx 🙂 YOU ROCK!

    Liked by 1 person

    1. The waiting for the official diagnosis is one of the most tiring processes, I’m sorry it has taken so long. Plaquenil is definitely one of my favourite drugs, if I had to choose haha, pretty safe and doesn’t have too many terrible side effects. Prednisone on the other hand is an absolute nightmare. Hopefully my kidney function starts heading in the right direction and then I’ll be able to start tapering on my prednisone. That would make me really happy, to feel like myself again.

      That is amazing Tammy!! Daily goals is key, small steps and just focusing on each day as it comes. Of course, tomorrow is never guaranteed so living up each day is the best way. I am really happy to hear you have been achieving your daily goals, I bet it feels amazing 🙂 I feel the same way about you too, we are two women with different paths that are able to inspire and support one another-that is incredible 🙂 I hope you have a wonderful day xo

      Liked by 1 person

      1. So sorry, I’ve been away for awhile, again. I’ve had a lot going on in my world. Both my daughter’s graduated within 5 days of each other, that took a toll on my health, but when your kids graduate, that’s something you just cannot miss. You have to be there, no matter what. That about did me in. I then had a wedding to attend and I wasn’t about to miss one of my best friends, son getting married. I went, had a lot fun, and I now pay the price for a few hours of fun with a lot of great people. I’m not doing so well. I know, up, down, up, down………………I’ve been knocked down, again. I don’t have any desire to get back up and just let everyone around me stomp on my soul because what I am able to do is just never enough. I’m not enough. To hell with em, I’ll stay right here in bed, drapes closed, blocking any daylight, door locked, music cranked. Must always have my music. I wrote a new post yesterday. It pretty much describes my feelings the best I know how to write about it.
        I agree about the Prednisone. Been on it many times, myself. It is awful. POISON. It kind of boggles my mind to think that such poison is a life saver in most cases. It’s a cure all for a lot of things. Sorry, you have to keep getting back on it. How’s your kidney function doing now? Has it helped, you think?
        So, as far as any daily goals, that has been put on hold, at least until tomorrow when I see one of my therapists and she makes me get back to it. Sigh……………………………..It did feel amazing for the very short time I was able to achieve my daily goals. xxxxx hang in there. hope to talk more, soon. 🙂

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