Frustrating I get up to do something five steps later I have
forgotten why I was about to do..ugh… We have just gotten my medications to a
point where daily life is more bearable but if one drug is not taken or held up
by insurance it can cause a ripple effect that will through the body into
chaos.
A couple of months ago I ran out of plaquenil and forgot to
refill it, pain ran rampant it, pain widespread, swollen joints, swollen
glands, extreme light sensitivity, inability to sleep, etc. Just last month I ran out of Restasis which
resulted in the same effects as above, but added in eye pain, itching,
headaches from light, etc.
Apparently
if the order is put in by my Oncologist it get approved but if my eye doctor
put it in paperwork has to be filled out.
Seriously it has been already filled out once and it was clearly
documented that I am allergic to over the counter eye drops, and I can only
take preservative free which doesn’t help the eyes I literally would have to
use the drops every hour.
During this time I had multiple eye infections, sever e
light sensitivity, itching scratch corona, etc. I have had plugs put that didn’t help at all
with my eye pain it actually scratched my corona. I have had my tear ducts cauterized 4 times
and guess what if the doctors hadn’t done it themselves and had it not been on
my medical chart they would Swear I never had it done. My eyes show no scarring or evidence it was
ever cauterized, so that option is off the table. The only option to give me some relief for my
eyes is Restasis
After 3 emails using the my chart link, 2 missed calls from my eye doctor (thankful she emailed me back as well) and someone at the insurance company that actually processed paperwork even though it was 450 pm when the paperwork was received. Then I called my Pharmacy and I should have know it was the idiot girl that always screws up my prescriptions that tells me ok I will check again like I said 2 hours ago it has changed check with us tomorrow. Hmmm...yeah so 2 minutes later I refresh the pharmacy website that updates where in the process your drug was and it had gone from insurance hold, to checking for allergies and quickly to preparing. An hour later it was ready and dumb dumb was working at the window and anytime she works it takes for every for each person to get waited on, like 10 to 15 minutes per patient on her bad days which she has a lot of, luckily the Pharmacist had time as the other tech was working the drive thru.
I have found like others I have met that crafting or any
kind of hobby helps to keep the mind off the pain. I recently read an article about one of the
lady’s I meet on facebook who has the same hobby myself (Making Barbie
Dioramas/Miniature Rooms) that working on them helped keep her mind of the pain
caused by Fibromaylaga.. Fibro happens to be one of many disease I
have been fighting since 2008, one of
the major one’s I actually had prior to 2008 Sjogrens.
And sadly it seems my taste buds are going bye bye, food no
longer tastes the same everything is bland.
#sjogren’s sucks. In other news
not really looking forward to my dermatology appointment cause if my Oncologist
was concerned about the spots all over,
I can only imagine what other skin disorders she is going to dx with me
I already have psoriasis, contact dermatitis, and like 3 others. I am allergic to water, anything that has
additives or perfumes, preservatives, plastic, latex, etc.
Right now I am researching to find other ways other than medicine to help alleviate some of effects of Sjogren's, the side effects from the chemo & surgeries and side effects from the medication. I am 99.9% sure one of the issues is mineral deficiency since my vitamin D is always low even with taking Vit D pills, and during chemo, actually really before and after chemo I have craved Potatoes. Logic tells me I may have low potassium and sodium that and my blood work always shows my sodium and the low end or below acceptable levels. To be honest everything ever tested is always at the low end or below and sometimes well bellow.
Up next......Why do I not sweat and issues it causes with my Raynauds.....
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