Flares 

Sometimes I wonder if flares start because your body just doesn’t like changes in routines! I did a few things today, not more than I would have at my regular job….but as of on cue I started flaring. The good news is my Enbrel is on board as is MTX. The downside is despite this combo it appears my SED rate is NOT dropping :-(. Since October when I started MTX and Enbrel I had expected my SED rate to drop….but it has only increased. I have a feeling come my next appt my rheumy and I might be discussing a new treatment routine. 

I have also realized that while I hate vitamin shots I am horrible at remembering the sublingual VitaminB! I need to take it twice a day to help battle the CFS…my other alternative is Aderal, which I hope to not need. 

Part of my routine has been to develop routines for myself. A better bed time schedule, a schedule for when I’m up doing things and ways to elimate some of the unnecessary stress. These changes also include my more positive thinking, a gratitude journal and a 6 item must get done list. It will take time to learn to manage the fantastic five but I am confident I can do so.

I am doing well in my MK business and looking forward to entering leadership. I didn’t realize how much I enjoyed being mentored and mentoring others. I’m learning so much about myself and I think what makes me the happiest is that I am able to reach out (such as CRPS awareness this month) and touch lives. While in my doctorate program I had started searching for a way to reach out and bless others….Im excited through my business I am learning ways to do that. It is certainly a growing process but one Im willing to learn to do. 

Tonight my goal is centered around lessening my flare! Hopefully the weather will improve tomorrow and I will wake up feeling better! 

#pushingthroughtheflare #fightingforanotherday

18 thoughts on “Flares 

  1. It takes a while to get SED rates down. Until then you just have to keep pushing through. Sometimes this is a gentle push, and sometimes you simply have to give it all you’ve got for the next step, the next hour, the next minute. It isn’t easy. I am glad, and relieved, to know you are pushing through. Remembering everything you need to do is hard. I have a medication reminder on my cell phone which has helped me. Maybe this is also an option for you. The app was free on my Android phone. Good luck.

      1. No problem. The reminder helps me a lot. The app I have lets me set an alarm reminder. It is supposed to sound like a bottle of pills shaking, but sounds more like a rattlesnake buzzing its rattlers! It scared me and my husband the first few times it went off! 🙂

  2. I sure hope you feel “better” real soon. You are very courageous in dealing with this and seem to have a pretty positive attitude. You inspire me. I think I’m getting closer to finally getting my official Lupus diagnosis. I’m already being treated with Plaquenil. Hope you have a good day. 🙂

    1. Yay!!! Plaquenil was also my first medicine! I sure hope the official dx comes soon I know it can be a long long fight to get it. Thank you soooo much for commenting. I love hearing from people who found my random words 🙂

      1. How well did Plaquenil work for you? Are you still on it, or have you moved on to something “better?” I’m so tired of fighting, but I am not going to just give up on getting the “official” diagnosis because it can make a huge difference in how I’m treated. Maybe to have the correct diagnosis would put me at peace, knowing that I’m being treated for this deadly disease, in the best possible manner. I know all about all the things this disease does to one’s body, as it’s happening to mine. My body is attacking one organ, one body system at a time. To not know is very frightening. Every disease I have lists Lupus as a possible cause. Every single disease. Now, to get just one doctor to put two and two together and give me the official diagnosis so I can get on with the rest of my life, knowing that the answer has been found and with that comes hope. Good luck and take care. 🙂

      2. Hey! I have gone through plaquenil, mtx, arava, imuran, Enbrel and now to mtx/Enbrel. It is a journey…and I totally get the frustration. I was RF negative and fought for two years to get a dr to go beyond the single RF test and run the RA and Lupus panels in which I had the positives. Not that I needed the name (granted made me feel better) but it was needed to get the right treatment because you are so right every single organ…one at a time! I am sooo glad you posted I hope you stay in touch!

  3. Hey! I was in a huge flare when I was in the hospital so I couldn’t get to my rheumatologist’s office for lab work and by the time I got out of the hospital, I was still in a flare, but it was easing a bit. I want to wait and go when I’m in a huge flare. I have flares often because I have so many body systems involved. It seems like they keep getting just a little bit worse with each new flare. Can you tell me anything about Plaquenil? Did it just not work for you, or did it work for awhile and then you had to switch it up with something else? Yes, let’s keep in touch. I need someone that can kind of guide me or tell me when I’m having a certain symptom, what I should do, and if it’s even related to Lupus. You can kind of like be my Lupus teacher if you want. Hope you had a “good ” day today. Take care and I hope to talk again, soon. :)xx Tammy

    1. Ohhh Lupus…it is like the friend that you make and sticks you like glue. Lol! I would love to connect, I’m here and on my Facebook (www.facebook.com/stlralf). Plaquenil I wasn’t on that long….my doctor didn’t know why but I started like a rash? It could have been a super bad lupus flare (and honestly probably was..) but my initial dx was only RA. So with the rash I was switched to Mtx. It wasn’t until about a few months later that my lupus panels were run and all were positive. So hindsight it probably wasn’t the Plaquenil at all. I’ve run into several on it who have done very well! I’m hoping you will go on that list 🙂

      1. I don’t get on FB much anymore since I started my blog. I do need to check it out and let everyone know I’m still alive. My brother passed away on Sept. 1, 2014. I’ve been pretty depressed and sad. We were the 2 middle kids of 4 and we shared a really special bond. Sigh………..but anyway, yeah let’s keep in touch. Have a good night and I’ll be talking to you, again, soon I hope. 🙂

      2. Awwww I totally understand Facebook….personally for my own page I don’t think I ever post. I have an FB for my MK and one for my passion of connecting to others like me and that is about it. My college Days of fb are long gone. I think I deleted my profile some 5-6 years ago and then realized to have a page I needed a profile. Duh me! I am so sorry to hear of your loss…loss is never easy and grief is journey in itself. This month marks my dad anniversary, missing him hasn’t changed but the time, 6 years this month, does help. Although granted those were words I never wanted to hear while my heart was still broken. Hugs! And yay so glad to find a new friend!

      3. When my brother passed away, it was so bittersweet because he is now with his son and dad. The sadness is for me because I just miss all of them so much. Okay, new friend, my name is Tammy and if we’re gonna be friends, it would be nice to have a first name for you. I’m very happy to have found another friend, myself. We can’t ever have enough friends. We need all the support we can get. I actually met one of my best friends right here on WP. We skype all the time, only I haven’t skyped with anyone for about a week. Anyway, we’re planning her trip. She’s coming to visit and stay here with me at my house for a few weeks. I really cannot wait. Skyping is just like sitting across the table from one another. I know her. I can’t wait to give her a great big bear hug. I’ll talk to you tomorrow or whenever, as I have only had a total of 5 hours of sleep in the past almost 72 hours. I must give sleep a try even though my mind says no. My body is tired and I’m getting rather delirious. So glad that our paths have crossed. Good night and take care.xx 🙂

      4. Awww so bittersweet! You are strong I can sense that! My name is Joanna some call me Jo others JJ. I am soooooo happy to have a new friend. I love to Skype 🙂 I’m a huge be on the phone use technology kind of person 🙂 how are you doing today?

  4. Hi Joanna,
    I hope you had a good day today. It’s never ending for me. I’m now back in the hospital on the cardiac care unit because around 4:00 a.m. this morning, I started having chest pains on the left side and then after awhile it started radiating down my left arm and my arm and had feel weird. I can describe it, but it’s not normal.. They’ve been doing a bunch of tests today and tomorrow I’m having a stress test. Hopefully, everything will turn out okay and I will get out of here in a day or two. I hope tomorrow. I would love to skype with you. When I get home or in a few days, if you would send me a message to my email with your skype address or whatever you call it, that way I won’t forget. I’ve got a lot on my plate right now and I’m kind of scatter brained at the moment. I must attempt to sleep because I’m still going on that 5 hours of sleep since I don’t know when, but I had to get on my laptop to send one of my therapist’s her nightly email and saw that you had replied. Just wanted you to know that I’m in the hospital and not ignoring you. Take care, my new friend, Joanna! I’m looking forward to skyping with you. I think my email address is on my gravatar. If you can’t find it there, just let me know and I’ll get it to you. Goodnight! Sweet Dreams 🙂

    1. Hey!!! I am sooo sad to hear you are in the hospital! Sounds like you had a day! Hugs! I’m looking for your email now 🙂 i hope by the time you see this comment you are feeling much much better!

  5. I haven’t commented before, but I agree about the Flares and changes in routines. I know that even just going to do errands can wipe me out for the rest of the day. Going to a small party, I suffer for days after. Even fun things cause stress on the nervous system. (Like many people, I have a combination of conditions including fibromyalgia, arthritis, PTSD, and asthma.)

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