Flare is like a Roadblock that makes Life Unpredictable

It is hard to explain to people why you cannot go with the flow any more or just jump up on a whim to go to a get together.  Honestly it is hard for me to explain why I do what I do but I am doing what is best for my mind body and soul.    Flares can sneak up on you especially when your suppressed immune system is desperately trying to fend off an infection.   For the most part I slept out cold from 2 amish to 11 am, then had to go out and get some food so I can have some energy.  I then did my daily exercise which involves walking around the woods and sometimes cleaning up sections, today it was about an hour, really it was only picking up limbs and cutting some vines.  I should have listened to my body when it said Knock, Knock, You need to Stop.  Nope my dumbass keeps going knowing that I needed to have energy to wash clothes and dishes.  For some reason Freaking Silverware disappears and damn we use spoons way too much, it seems they are always in the sink dirty.

My equilibrium seems to be off it has been for a little over a week, luckily I have wither had my walking stick or have been able to grab myself to prevent me from falling.  I am not sure if is the Sjogren’s attacking my ears or is the eyes or combo of eyes and ears.  Cause sometimes if I move my head to fast my eyes have issued focusing and it causes dizziness and a trip to the porcelain god.  I am hoping that it is just the Sjogren’s, I am emailing my Oncologist, to let her know of the equilibrium issues.  I also had issues holding and trying to use pliers to get a broken light bulb out of a lamp (don’t ask it is the 3^rd time I have down this).

Today as soon as I got back in from my adventure a wavy of drowsiness hit, then a throbbing pain behind my left eye.  Lights on Lights off which one will help relieve whatever black cloud that surrounds me.  Move and the joints feel better, continue to walk and pain radiates from everything.  Even a simple touch or leaning on the arm of the sofa is painful.  Basically any part of the body is sore to the touch; any area that has been operated on has even more pain.  Then there is the temperature controls hot, cold, hot my body has issues regulating and I keep getting a heat rash in the same place my right underarm.   Waves of nausea, struggling to keep the eyes open, closing the eyes for a quick nap, ok more like closing the eye toil the wave of nausea passes.  I can already start to hear some crackling in my lungs, and my sinus are draining down the back of my throat, I am coughing up some of gook that is draining down.  The last time I had this it lead to a bad case of walking pneumonia.

Since I already overdid it I decided to knock out the dishes and laundry, while doing laundry Zeus was stuck outside, I decided to let him in at 9pm even though I still had one more load.  Normally if I am the only one home he is nice instead of being an ass…yeah right.  As usual his highness only came in half way meaning I had to drop a piece of cheese to get him in the rest of the way.  I slowly went to unbuckle the leash and I heard that muttering growl. Luckily  my relaxes was on point at that moment allowing me to step back quickly when his ass jumped up, but I had the bribe of all bribes the golden cheese.  

He was fine after getting his cheese allowing me to finish up my once a month laundry affair.  For those who don’t know my and Zeus have a love hate relationship, I have bestowed the name of Lord Jackass of the dogs upon him.  He loved me once when I first moved back while we were revamping the garage to an apartment I stayed in the main house meaning me and Zeus saw a lot of one another.  Then I moved into the garage and got a Kitten name Riley aka Queen RileyCoyote.  Therefore Lord Jackass no longer likes me unless I am the only one around.

 As I am typing sharp stinging pain is shooting up my fingers, and my body feels like it was in fight with UFC Champ Holly Holm. Bones, muscles and joint are all aching from the arthritis to the Sjogren’s and freaking fibromyalgia.   I can feel the inflammation running rapid, move in a certain way and you will hear a pop.  The pop gives a short release of pressure from of the joints, though it is very short lived as the fluid builds back up.  I seriously need to find a massage therapist that has experience with Cancer and Sjogren’s patients.  

Every person is different in how they handle their cancer and flares from Sjogren’s each symptom has to be treated individual.  I am unique in the fact that not only do I have Sjogren’s and Fibro I also have chronic pain stemming from my fight with Terminal cancer that started in 2008.  I have had 12 surgeries, 31 days of radiation, 2 years of muscle tightness (left side) from the breast implants, 3 major infections, 3 rounds of chemo (a few of those rounds dosage was increased due to my lack of side effects) all this was a 2 year period.  Doctor's will even admit that they don't know what the repercussions wll be Why?  Simple put by what the doctor's said, "You're 29 and not suppose to be Stage IV" then "Their is no Protocol for someone your age with Stage IV so we are going to have to make up the protocol as we go along"   Recently some researches overseas have discover what chemo drugs  cause Chemo Brain and I had one of them.  Extreme Fatigue and along with Chemo is a royal pain in my behind. 

Today my symptoms required a quite stress free zone that is warm and cozy with a bowl of mac and cheese.  Many don’t realize that I enjoy solitude especially when I am not feeling good and that I need to be told in advance of events.   Quiet solitude is what I enjoy though I would like to join family and friends out on the town or outside but majority of the time that isn’t in the cards.  It doesn’t mean I am being anti-social if you want to talk to me IM on facebook or text me, if I am having a bad day it may take a day or two for me to reply but I will.  Me and talking on phones isn’t happening unless I have to talk to my doctor’s.  I despise talking on phones that and my voice box can’t handle talking, my voice will start crackling then I will lose my voice entirely. 

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.....