Extreme Fatigue Enemy of Mine

Extreme Fatigue is back with a vengeance had a good run until I increased my walking, when I haven't figured out how to increase my food intake, a fatal mistake. Restful sleep is all but a memory but I must figure out how to get to sleep today.  I need to decorate the tree and most important be awake, rested and alert for Saturday afternoon when we go to the movies to see Star Wars. I am pretty sure I know what are some of the causes are problem is figuring out a solution.

I am pretty sure my Rheum will be switching me to the injection form of Methotrexate instead of the pills.  We discussed it a previous appointment I choose to increase the pill dosage first, due to the concerns from my Oncologist about further oppression of my immune system will have on my Cancer.

It is frustrating when fixing one issue causes others to be thrown into a downward spiral.  Pain and stiffness in legs and muscles meant I needed to increase activity, so I increase my walking.   Issue with that is my digestive system is jacked up in so many ways that right now I can only hold down organic turkey covered with a spice called Tumeric (it has helped immensely with some of my inflammation) with red onions, mushrooms and cheese which I eat with broken up taco shells.  For some reason only the Walmart brand seems to stay in the stomach.  I have been able other items so I can switch it up some, celery, green onions, corn, rice have made an appearance.  I also put it on top of a baked potato with sour cream topping or ranch on the side.  All depends on the mode of my stomach and taste buds or lack of taste buds.   The amount I eat depends greatly, it isn't very much which also plays a  part in the energy.  And when I run out fuel it can cause nausea which leads to upchucking of what ever is left in the digestive process or stomach acid.

The nausea is also being caused by my inability to properly regulate temperature which is made worse with the fact I have Raynauds.  Overheating also causes nausea which leads me to upchucking if I can't cool off fast enough.  Then there is my eyes extreme sensitivity to light even and if not worse at night if I am walking around with a flashlight.  Not sure why put my eyes and maybe equilibrium is playing apart but it happens in the day time too while my eyes have issues adjusting when I move my head.  It doesn't happen all the time and sometimes it happens at the same time I am having an overheating issue.

Looking at my blood tests I am always on the low end of everything, especially minerals like potassium and sodium.  My iron and vitamin D are low as well while researching the foods I had been eating and craving were the correct ones issue is I am not eating calories due to my stomach issues.  The other issue is financial I can't afford the food I need to be eating which is basically organic and I can't really hunt/fish for what I need.  I can't eat processed food, though I do breakdown once and a while for the first time in 4 months I had a biscuit from Chick Fila.  Normally I get them from a country kitchen that cooks them fresh from local food sources.  When money is tight though I have no choice but to eat processed which is normal only personal frozen pizzas or egg rolls from the Dollar Tree.  One month we ran out of money and for like 4 days that is what are food options, which happened cause I had to pay for insurance and vet for my best bud my kitty cat RileyCoyote.

Restasis, Fibro, Sodium and Potassium...oh my...

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.....

Eye Issues and Scan Anexity

My monthly Eye Appointment approaches and as I suspected the month supply of Predisone I got in December was successful in keep my Eyes in check and knocked most of the inflammation out, for the most part I got away without wearing my sunglasses all the time indoors or outdoor.  And naturally it has been 2 weeks since I took the last of my Predisone and wouldn't you know my eyes are inflamed, my joints are inflamed, my partoid glands swollen and I am pretty sure my left eye has bacterial conjunctivitis for the up-tenth million time.  Both eyes are burning and itching more than ever and the projected weather front isn't going to help.

From what I gathered from the Weather Report a nasty cold front is coming across the United States which means the heat will need to be turned on which is going to make things worse.  Nosebleeds and burning itchy eyes and severe photo-phobia, ugh.

A few appointments ago we decreased  my flexeril and added Neurton in attempt to get the fibromylgia under-control.  It seemed to be working but now I am also 95% sure it isn't and I am hoping increasing it back up will relieve the soreness and pain in my lower back.

Nervousness and Anxiety aka Scan Anxiety are also creeping in as it always does when it gets close to check up time to see if my Autoimmune Disorder is still winning the war with my Cancer.  Every new pain and strange sensation pulls at one's nerves, my fingers are crossed that by increasing my flexeril back up will fix the soreness and  pain issues.  However I am not certain all the soreness and pain can be connected to the decrease in Flexeril since some of the pains I haven't had before and some others I did when my liver was cover with cancer.  I guess I will find out in Feb since I can't refill my Flexeril till the middle of the month and my Oncology appt is at the beginning of February.

Oh well in the mean time I have to buckle down and open my Etsy and Ebay store so we can make money to pay my increasing pharmacy bills, and to pay for gas and food for my doctor trips. Got to love the #cancerlife and #sjogrenslife.