So today saw me going to my rheumatologist for the first time this year. It was an emergency appointment because I had been flaring for most of December. I wished it was just a ‘let’s touch base to do a check up and a look at the meds you’re on’ kind of appointment. After the rheumatologist I had an appointment with my physiotherapist which I was really looking forward to. A busy medical day for me.
As I stepped into my rheumatologist’s office something just came over me and I felt overwhelmed. I felt the prickling feeling in my eyes. I felt tears coming on. I’m not a crier. It takes alot but my chest felt heavy and I started literally choking back the tears as I sat down. There were other patients there and these ladies were talking about how awful it was to live with unrelenting pain. I choked up even more.
I thought to myself “Hell no Tracey. You are not going to cry. We are not going to be doing this here and now. Pull yourself together”. I then joined in, on the conversation. The more we spoke, the more the feeling of wanting to cry subsided but I still had the heaviness. Probably because of the topic of unrelenting, misunderstood, invisible pain.
Finally it was my turn to go in. Thank God help was finally here. We have a great relationship with my rheumatologist. We are the epitome of an old married couple in these consultations. My hubs made some remark about the decor and I corrected him. My rheumatologist said to him “that’s why I leave the decorating to my wife”. I looked at him and said “Exactly! Tell him!”. I turned to hubs and said “And THAT is how you stay alive”. My rheumatologist burst out laughing. He has that “I can’t even” laugh. He is such a quiet, mild mannered man that the crazy stuff that comes out of my mouth gets him everytime!
I explained what the holidays were like for me. How I missed out/wasn’t fully present for the festivities. The fatigue, the pain and the feeling of being unwell. My frustration and depression. So like I thought this was going to require IV treatment. Starting tomorrow. Massive doses of really strong steroids into my veins. Bring it on! I want to feel better dammit! Bonus is I don’t have to stay in hospital I can just go to the hospital for the infusions. As I said before, he is afraid of putting me in hospital for treatment and me ending up with a super bug. So this is a win win situation! I’ve never been this excited at the prospect of an IV! The only problem is the difficulty in finding veins.
We had a look at my meds as we would do in the new year. Unfortunately based on my current status quos I had about 4/5new meds added to the list. (Will have to check the script to confirm) We also upped the dosage on some of the other meds. We will revisit this after I’ve taken them for a while. Some of the meds are meant to work for fatigue as well. I bloody hope so. My tired is tired! I’m feeling hopeful. Let’s get this going! So I’m going in tomorrow for the first I.V infusion. I also have to do a full blood work up (a whole lot of blood tests). Let’s see if my veins are in the giving mood this year because last year they were selfish as all hell. Like getting water from a rock. Considering they need about 6 vials… not fun. No bueno!
I had physiotherapy after. Holy hell. I’m just glad my face could not be seen because I was on a massage table! The faces I was pulling! My neck muscles were a complete mess. They normally are but because of the holidays and not having regular physio they’re kind of bad. When she started pushing on those knots it took every thing in me to not use colourful language! I just kept contorting my face in the massage table hole all the while reminding myself that I would fell better after.
Well I’m back from physiotherapy. I’m using my microwave heat bag on the knotted areas. If you suffer with muscular pain, it will really benefit you to get one. I even travel with it. I will not part from my heat bag easily. I use it on my neck, back, period pains stomach cramps etc.
And so it starts … officially. I’m not complaining. I’ve been wanting treatment for my lupus flare and I’m getting it. I’m looking forward to feeling better. I hope the new meds do great things. I am going to do my darndest to stay positive but also not beat myself up on the days where I’m not a happy clappy cheerleader. A man in the doctors rooms asked me “Is lupus something you have for life?” Yes, I responded. It is. The only thing you can do is try and manage it as best you can. Thank you to those who have been worried about me. I love you for that. You can rest a bit easier. Treatment starts tomorrow and hopefully within a week I will be full steam ahead!
Tomorrow I have what I’d like to think is an important, informative post for those of us who have or have loved ones with a chronic illness. A topic often mentioned but not often written about. I think you will find it informative and give you pause to think about certain things in your life. So please pop back in tomorrow for that!
Have an awesome day!
ONE LOVE ✌