It is challenging as a chronic illness blogger to find that ideal balance. To be transparent with out being TMI. To share honestly without coming off as complaining or looking for sympathy. To share not only about the battle with Lupus but the journey of life. To offer support without being overly optimistic or coming off as being nosy. I know other spoonie bloggers must encounter some of these challenges.
Lately, I have posted a lot about Prednisone. This was not something I planed. I have posted about it because I know a lot of people are forced into the wind whorl of Prednisone confusion. I feel like I never fully adjust to Prednisone. Once I am close enough to adjusting the doctor says Lets Tapper.
Tapering is great. Really. I fully understand why coming off prednisone is positive. I understand the side effects. On the other hand I do not want to experience intense pain that cannot be put into words. Pain so deep and intense that I cannot breath properly, cannot lay down, and can barely sit. When that pain invaded I wanted to cry or scream but I could barely get enough air into my lungs to speak. I don’t want to become so weak that I cannot get out of bed. So weak I can barely walk. So dizzy I using the stairs alone or showering is a hazard. I have been sick for so long. Borderline critically ill three times in two years. I cannot bare the thought of going backwards with my health anymore.
Personally tapering to fast, even on high doses of Prednisone is not a good idea. I had expected to taper when I saw my doctor. I had my entire schedule figured out from the dosage to what to eat on which days. My plan was flawless, leaving plenty of time to adjust before school began. I had anticipated 10 mg taper. Well that was not on my Rheumy agenda. 20 mg taper. 6 weeks. It didn’t seem to bad at first. Then reality slapped me in the face there is not enough time. This taper is going to fast.
With determination I pushed as hard as possible to get on the lowest dose possible. I am still paying for it. I made it to 35 mg. I am hoping and praying that my body can regulate its self somewhat and quit throwing a tantrum over the next few weeks. Tapering more now would only do harm.
I am blessed that my doctor increased my methotrexate, sadly the increase was only by 2.5 mg. Methotrexate has made a positive impact on my health. I have seen good days because of it. It seems to take a while to kick in then wears off too quickly.
I have encountered a sticky mix of side effects and/or addition symptoms. I am either a hungry hungry hippo or have no appetite at all. The struggle with food still remains. Thus so does the struggle with weight and water retention. I have begun losing my hair again. With the combination of medication, not having Benlysta, and my Lupus it was expected, I just didn’t know when it would start.
Without a doubt my pain has increased. I am thankful that it is bearable, it is not as bad as when I was in the hospital. My joints, back, chest, and stomach are acting up the most currently. The liver pain visits briefly. I also have difficulty breathing at times, not like asthma though. I think it is either POTS related or liver related. My sleeping schedule is like the merry mixer ride. Then there’s the lovely fatigue we all have. Most times it seems impossible to treat.
With the shift of medications I have had to once again break up with my to do list. Like most people with a chronic illness I hate resting and feel guilty for it, but I know it is something I need to do. I need to do what my body needs me to do in order to feel a little better and to prepare for next semester. It is all part of the fight to stay out of the hospital.
Today was a mild (I use the word mild lightly) flare day. I woke up with no appetite at all. No big deal; I just grabbed an ensure. I went up the road this morning to have blood work done. My veins had a nice vacation from needles. I did not expect to be stuck with the needle half a dozen times (or more, I lost count). The same lady does my blood work monthly. She is sweet and familiar with my case sorta. Neither of us could figure out why my veins would not give blood. I know my body has trouble with blood flow but this was a first for me. Yes I have been stuck more then a dozen times in one sitting, but that usually isn’t completely my body’s fault. Those times have been linked to people who weren’t good at their job.
My abdomen was throwing a fit. Lots of pain, nausea, and dizziness… typical spoonie day. In addition my anxiety decided to drop by for a visit. Though I didn’t feel excellent I am blessed that I was strong enough, just barely, to attend a ladies dinner at my church. Sometimes getting out of the house and being around people is lovely. It can be a distraction. Hopefully tomorrow will be a better day.