Friday, March 31, 2017

Cohen's Christmas Present

My health update: I feel like something is still active with the mini-fevers and sweatiness and aching glands both neck and under my arm and increased levels of aching, and leg squeezing pain that had me seeking an increase in the oxycodone combo I take. A recent blood test revealed mild neutrophilia with an elevated WCC but it is what I feel like that counts to me and ever since before Christmas I have been struggling to find comfort.  I have taken a couple of weeks of daily 5mg prednisone which has indeed helped in terms of energy, some pain and clear-headedness but I am not allowed to stay on it so I will drop back to every second day now.  My mood is never great on prednisone at the start anyway so I won't miss the depression that came on with the steroids.

March has been much kinder to my stomach but I eat what I feel like now which means I am a lot less strict about doing what's best for my blood sugar and the daily beef mince burger phase is over and I don't need or want cream in my coffee like I did. I eat small but that's not new and I avoid bready things but mainly because I would prefer something less nutrient dead which doesn't tend to trigger indigestion or reflux.  I've been using up the sorghum flour (mixed with tapioca flour) and I made a fruit loaf and corn fritters so that must mean I am feeling better.  Me? Baking?

I can't begin to describe how horrible it has all been up till now despite not having any mobility problems.  It is difficult to feel human when I am like that and I have hated waking up to too much pain.  I am taking the Targin more frequently - 4 times a day (less if I sleep through) which has helped a lot by avoiding the spikes and putting me on a more even keel but Dr G insists that it lasts 12 hours.  He is so wrong.  At least Dr. J believed me.  My total daily intake of Targin is now 30mg.

Dr G also wanted to check on blood markers for vasculitis so I had a heap of blood tests and apart from what I have already mentioned I still have an equivocal MPO-ANCA (anti-neutrophil somethings antibodies)  as I did 12 months ago but the other ANCA measured was not positive like it was last year so it will be left to ride along with the neutrophilia and a slightly elevated CRP at least until the rheumatologist comments in September.  He's happy I have an appointment and approves of Coastal Joint Care.  He will not let me go over 40mg of Targin a day at any time during the next 12 months and I know already that my pain will not be eliminated by that.  I think the steroids have helped more so than the dose increase I'm already on.  But now I have to go without them too.  I so don't want to go back to feeling like a ball of pain instead of a human being.  In fact it was impossible to "be" in that state.

I'm still running out of breath quickly on exertion but while I still have steroids in me I can walk fast before it catches up.  It has been nice not to be so slooooooooooooow.  I still get heart palpitations and I've been taking Deralin all year.

The stupid eye headache that seems to respond to rhinocort is still there but it is not unbearable like it was and I have the curtains half open on a couple of places but I have had so much face pain, my jaw has been playing up, I have felt it click out of place, just like my neck goes out when I use my arms the wrong way.  All of that is closely linked with a right sided ear-ache and sometimes phantom toothache.  Yep, face pain has been bad and the deep eye pain.

Taking a lung spray containing steroids has really helped with my throat control so that I can sing a bit but that's not what it is for.  The Symbicort seemed to help with the rattles and squeaks and I am not sure yet whether the Pulmicort I switched to will be as effective. Sis says I should wait a month for the Pulmicort to work.

The Summer humidity has made comfort hard to find and it has continued into March.  I am so sensitive to temperature changes as well so it is always a battle finding the right setting on the air conditioner but it is usually set on dry/dehumidify rather than cool.  I can't reduce the temperature below 26 degrees without noticing extra pain and now that March is reducing the night time temperatures I am already into wheat bags on the cold pain spots while the humidity is causing me to sweat from my face, the back of my head, my back, behind my knees.  I keep my arms bare but my painful legs and hip/lumbar region respond some to as much warmth and tightness of clothing that I can put up with, which is not much since my skin hurts.  It is getting harder and harder to find comfort and without being comfortable it is hard to remain happy.  But right now after a couple of three weeks of low-dose steroid I am at my best which is not very encouraging because this just isn't good enough. I'm too tired.

1 comment:

zena said...

Life can be real pain for you and it makes me feel sad ☹️
I am glad however, that you are a little better at the moment.
Love you Sis