Chris Tomlin O Come all Ye Faithful

Friday, February 28, 2014

Points of Interest

I will start this blog but do not know if I have time to finish it before the "bus" comes to take me to my rheumatologist appointment in  New York.  If not, I will finish it later.  I am having an attack of psoriasis in my face and on my hairline. Fortunately I do not have the thick white scaly kind or the blood red blotchy kind. Mine is dry bumps that are flaky and a bit itchy. I don't know if this is just the beginning of the plaque psoriasis (the white scaly kind) or if it will just remain the way that it is now.  I live in the hell of constant pain. Yet I  don't think that it is much easier to  live with the constant visible hell of a skin disease.  Sometimes my hell is made worse by the fact that it is invisible.  However if the visibility of it were to look like some people I've seen in the misery of horrific sores and flakiness of their skin, I would vote that it would remain invisible.
If you suffer from  severe psoriasis,my heart goes out to you.  I think that is one disease that  may be worse than  RA.   However I have both. Both the pain and joint deterioration as well as the skin problems.  But I really do not count my mild case as anything near like some of you suffer.

I just ordered a six pack of coal tar soap as well as a bottle of coal tar shampoo.  Why would I want to smell like a newly paved road in the summer sun?   Well because it works.  For me, the soap works almost instantly.  I do need to keep washing my face or body with it  constantly until the flair goes away....but it's a small price to pay.  For me the smell reminds me of living in Hackensack  New Jersey,where they were always paving roads  and the smell of them in the summer was like the fragrance of my youth. lol...romantic, right?

Right now I"m waiting for the bus (as I already mentioned) to take me to my rheumatologist who treats my RA, PsA, and Sj.  It will be good to show him this little flair up on my face....usually they do not get a chance to see it "in action"....

I don't know what to  say as to whether or not my Actemra is working in relieving my joint pain. I think  it has made the mobility in my hands better, although they still hurt. My SI joints have been horrible. At first I thought it was my hips that were hurting....however since both hips have been replaced and are not yet due to be replaced, I think it is caused by my Sacral Illiac joints....And the pain from that is like being kicked hard in the behind with every step that I take. This is bad news because other than steroid/anesthetic injections in  the lower spine, there is nothing they can do about this kind of pain.  They cannot replace those joints. And those injections historically are completely ineffective for me.  This pain is going to make it impossible to go anywhere without my wheelchair.  Yesterday my friend Ralph was going to take me to the grocery store....but first we stopped in Staples.  What I needed was in the back corner of the store.  Halfway there, the pain in my behind was excruciating.  Limping badly, I got my item and then struggled to get to the front of the store.  I told Ralph that the grocery store was out of the question....but here were about 5 items I really needed...So I stayed in the car and Ralph picked up my items.  I could not use the scooter because my shoulder is still in a a sling and I could not steer nor pick up things off the shelves.

From now on I will have to always use the online order/delivery service a local store offers. What a blessing that is turning out to be!  I would be completely stuck without it.  Some months ago I lost my handicapped placard for the car parking.  I have no idea if I left it in someone's car or if it is in some bag or pocketbook I have here.....I've looked in most of them....all of them that I could think of...with not luck. I will have to see about getting a new one.

This has been a very chit chatty post. I just wanted  to update you on how things have been for me physically.  Low back pain, SI pain, monthly IV infusions, psoriasis, shoulder replacement, crippled hands...and over all and in all and through all have been the loving hands of God, meeting my needs, giving me strength for each challenge day after day. Please continue to pray for me....and if you have a need for prayer that I can help you with please either leave a comment or email it to me. cynthialottvogel@gmail.com  I promise to be faithful in praying for you.  I have a long prayer list and I got through it at least once a day.

God bless you all and thanks for reading.



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