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.....

Cold Weather and Secondary Raynauds Not Compataible

Cold weather isn’t good for the body definitely going to have to wash my thick fleece blanket. Only problem is part of my body will get to hot which spells trouble for my toes and fingers.   Last night was the first time ever all my toes and fingers were tingling and painful.  It kind of felt like when u cut ur fingertips too far down and the tip becomes painful, yep that is what it felt like by magnified.   One had will have white finger tips the other hand red finger tips   On top of the hands and feet are swollen, just when I was getting everything under control I have an allergic reaction to the contrast, get that under control after 2 days then the temperature drops and the Raynauds (definition below) below) flares up.

I learned the hard way my body is nowhere near what it used to be, simply rearranging furniture, folding clothes, which involved up and down motions and side to side.  Well my eyes, body and stomach didn’t like it, especially since I walked more than normal through the woods.   Headache, heavy sleepy feeling, dizziness and nausea, the nausea seemed to stop when I sat down, headache went away with all the lights off but not the nausea.  Simply cleaning meant a short date with the porcelain god.

It is frustrating a lot of things I want to do that shouldn’t take long but a body that doesn’t work properly, a 30 minute job turns into a week or more job it is beyond frustrating.  And for some reason I haven’t been able to attain my normal sleep though I have had vivid crazy ass dreams that would put Hollywood to shame.   Now only if I could hook the computer up to my brain download the movies and stories I would be a freaking Billionaire.   So much creativity trapped in my head that somehow needs to escape and maybe make me some money to pay off all these freaking medical expenses.  The ugly truth the longer I keep the cancer in a choke hold and pinned to the mat the more expensive it gets cause you now the CEO of the Pharmacy needs even more money. 

Oh well I can only work with what I got, hopefully I can find some cheap rugs for the floor that will hopefully help to keep my feet room.   Hopefully I can find some fuzzy cool slippers and some fuzzy socks this week.   Hopefully the temperature will rise some so I can finish cleaning out the shed/workshop without having to turn on the heater.  Cause I need to get Gayle’s Attic and AcTion FaShion (sixth scale toys) store up and running. 

http://www.niams.nih.gov/Health_Info/Raynauds_Phenomenon/raynauds_ff.asp

What is Raynaud's?

Raynaud’s phenomenon is a disorder that affects blood vessels, mostly in the fingers and toes. It causes the blood vessels to narrow when you are:

• Cold
• Feeling stress.

Primary Raynaud’s phenomenon happens on its own. Secondary Raynaud’s phenomenon happens along with some other health problem. (I have this one)

Who Gets Raynaud’s Phenomenon?

People of all ages can have Raynaud’s phenomenon. Raynaud’s phenomenon may run in families, but more research is needed.

The primary form is the most common. It most often starts between age 15 and 25. It is most common in:

• Women
• People living in cold places.

The secondary form tends to start after age 35 to 40. It is most common in people with connective tissue diseases, such as scleroderma, Sjögren’s syndrome, and lupus. Other possible causes include:

• Carpal tunnel syndrome, which affects nerves in the wrists
• Blood vessel disease
• Some medicines used to treat high blood pressure, migraines, or cancer
• Some over-the-counter cold medicines
• Some narcotics.

People with certain jobs may be more likely to get the secondary form:

• Workers who are around certain chemicals
• People who use tools that vibrate, such as a jackhammer.

What Are the Symptoms of Raynaud’s Phenomenon?

The body saves heat when it is cold by slowing the supply of blood to the skin. It does this by making blood vessels more narrow.

With Raynaud’s phenomenon, the body’s reaction to cold or stress is stronger than normal. It makes blood vessels narrow faster and tighter than normal. When this happens, it is called an “attack.”

During an attack, the fingers and toes can change colors. They may go from white to blue to red. They may also feel cold and numb from lack of blood flow. As the attack ends and blood flow returns, fingers or toes can throb and tingle. After the cold parts of the body warm up, normal blood flow returns in about 15 minutes.

What Is the Difference Between Primary and Secondary Raynaud’s Phenomenon?

Primary Raynaud’s phenomenon is often so mild a person never seeks treatment.

Secondary Raynaud’s phenomenon is more serious and complex. It is caused when diseases reduce blood flow to fingers and toes.

How Does a Doctor Diagnose Raynaud’s Phenomenon?

It is fairly easy to diagnose Raynaud’s phenomenon. But it is harder to find out whether a person has the primary or the secondary form of the disorder.

Doctors will diagnose which form it is using a complete history, an exam, and tests. Tests may include:

• Blood tests
• Looking at fingernail tissue with a microscope.

What Is the Treatment for Raynaud’s Phenomenon?

Treatment aims to:

• Reduce how many attacks you have
• Make attacks less severe
• Prevent tissue damage
• Prevent loss of finger and toe tissue.

Primary Raynaud’s phenomenon does not lead to tissue damage, so nondrug treatment is used first. Treatment with medicine is more common with secondary Raynaud’s.

Severe cases of Raynaud’s can lead to sores or gangrene (tissue death) in the fingers and toes. These cases can be painful and hard to treat. In severe cases that cause skin ulcers and serious tissue damage, surgery may be used.

Nondrug Treatments and Self-Help Measures

To reduce how long and severe attacks are:

• Keep your hands and feet warm and dry.
• Warm your hands and feet with warm water.
• Avoid air conditioning.
• Wear gloves to touch frozen or cold foods.
• Wear many layers of loose clothing and a hat when it’s cold.
• Use chemical warmers, such as small heating pouches that can be placed in pockets, mittens, boots, or shoes.
• Talk to your doctor before exercising outside in cold weather.
• Don’t smoke.
• Avoid medicines that make symptoms worse.
• Control stress.
• Exercise regularly.

See a doctor if:

• You worry about attacks.
• You have questions about self-care.
• Attacks happen on just one side of your body.
• You have sores or ulcers on your fingers or toes.

Treatment With Medications

People with secondary Raynaud’s phenomenon are often treated with:

• Blood pressure medicines
• Medicines that relax blood vessels. One kind can be put on the fingers to heal ulcers.

If blood flow doesn’t return and finger loss is a risk, you will need other medicines.

Pregnant woman should not take these medicines. Sometimes Raynaud’s phenomenon gets better or goes away when a woman is pregnant.

What Research Is Being Conducted to Help People Who Have Raynaud’s Phenomenon?

Current research is being done on:

• New ways to find and treat the problem
• New medicines to improve blood flow
• Supplements and herbal treatments, but these have been found ineffective in most studies
• Causes.

For More Information About Raynaud’s Phenomenon and Other Related Conditions:

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov

Frustration...Can't have one with the other

So many medications that can have adverse effects and a cocktail that hasn't been used before.  After negotiation at the end of last year I was able to get a month Predisone out of the doctor, and Predisone eye drops in an attempt to get the inflammation under control.   It got body wide inflammation under contol, gave me a little more energy but didn't help the light sensitivity in the eyes.  It wasn't till the eye doctor decided to think outside the box and put me on Monocycline, and BAM I could go outside, turn the lights on without pain it also cleared up the eczema and dermatitis.  This allowed me to be able to walk around the woods in the shade since my skin is light sensitivity due to the disease as well as the medication.

But the Monocycline doesn't help with the inflammation, itching, extreme fatigue and the neck glands swelling.  A week ago I started to have another bad flare up, my cat was sticking close by, glands started to swell, intense fatigue, waking up like I went 12 rounds with Mayweather, and itching like I rolled around in the poison Ivy.   Luckily I was able to get in touch with my doctors and get some Predisone, which meant that I can't my Monocycline which means...........ugh my eyes are starting to hurt.

So frustrating cause I Can't have one with the other....Later this month I get to meet with someone that specializes in Fibromyalgia, lets see what there opinion on the situation.  More than likely it will be some other medication, cause every freaking specialist recommends a different med Digestive, Neurology, Rhematualogy, ENT, Dermatology....problem is most of the drugs they suggest can't not be mixed...ugh

It is frustrating since we are having to do a balance act on a high wire with no new over the Grand Canyon.  Sjogren's is a royal pain the rear and is exasperated/complicated by the lasting side effects and changes caused by the Aggressive Treatment from countless surgeries, chemo and radiation.  Don't judge a book comes to mind, the jacket cover may be new (young) but the pages are old and frail.   Chemo ages the body internal and is more than likely what triggered the Sjogren's which is usually diagnosed in woman AFTER menopause.  When you are subjected to Chemo it puts you into menopause that may or may not be permanent.  For my case it wasn't permanent, but the damage had been done my immune system began systematical attacking my body.

Though looking back thru my childhood, school, college, and summer camp there were signs of the Sjogren's, I have surmised I am allergic to city life.  Moving back to Small Town USA to our family land which way back in the day was a farm surrounded by trees fixed my sinus.  I thought it was Pollen but all the sinus draining and pressure disappeared the farther away from the capital I went.  What is even crazier is it instantly returns once I get close to the Triangle, hmmm wonder if the Triangle is like the Bermuda Triangle shit goes hay wire once you get in it...lol...

Still have to figure out to pay for much needed dental work, since I currently don't have dental insurance like it really does any good the bill is going to be astronomical since I have to get a specialist.  Also got to find some discounts for my prescriptions so I can get all of the them instead of picking and choosing especially the items for my skin and eyes which is expensive.

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.

Eye Anatomy and Disorders: An in-depth look at to my latest Dx

Eye Anatomy and Disorders:  An in-depth look at to my latest Dx

Since Carolina seems to like to give degrees out (sorry I had too), I should be a Doctor by now, with free parking and a salary.

As many now I have been battling one thing after another since 12/2007 when I stepped on the UNC Hospital Grounds.  I never really liked science I even figured out how to get out of High School Chemistry and still managed to get accepted to State, UNC-Wilmington, Charlotte and UNC, by taking Marine Biology instead and believe or not it was harder to get into State which was the last school I got into cause dummy me picked the School of Design as my first choice luckily they had started a new program 1^st year college that had space.   Well back to the topic, Medical Terminology and learning the diseases, treatments, and reading medical journals and studies.

Both my cancer Triple Negative Breast Cancer and autoimmune disease Sjogren ’s syndrome are newer discovered disease’s which doctors are still studying and learning.   From what I have learned from fellow patients and recent studies there may be a correlation between Breast Cancer and Autoimmune Disorders.   My case seems to be one that other now has other doctor’s pouring over my file according to my oncologist. 

I have had a few questions about terminology and why cauterization.  So today’s lesson is an overview of eye structure and definition of my dx

First let’s take a look at the Structure of the Eye:

  http://www.patient.co.uk/health/dry-eyes-leaflet

Dx. 1 Posterior blepharitis- this issue involves the Meiomian gland as noted in Figure 2 at the bottom, according to dry-eyes-leaflet, the gland is responsible for making an olly liquid called Lipid which covers the outer layer of the tear film.  This layer of the eye is supposed to reduce evaporation of the watery tears and keep the tear surface smooth.

Sjogren’s is an autoimmune disorder that loves to cause inflammation and destroy glands within the body.  As we learned early in science water plays a vital role within the human body, according to the USCG “Up to 60% of the human adult body is water.”  

http://water.usgs.gov/edu/propertyyou.html

In laymen terms my immune system is attacking (inflaming) the Melomian Gland that is responsible for lubricating my eye

Cells of the conjunctiva at the front of the eye and inner part of the eyelids also make a small amount of mucus-like fluid. This allows the watery tears to spread evenly over the surface of the eye.

The tears then drain down small channels (canaliculi) on the inner side of the eye into a tear sac. From here they flow down a channel called the tear duct (also called the nasolacrimal duct) into the nose.”  http://www.patient.co.uk/health/dry-eyes-leaflet

Part 2: Coming soon: Steps that lead to Cauterization and how it is done preview