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.....

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

16 CT Scans and 2 many Specialist Doctor's

Eight years people Eight years of getting CT scans twice a year, I have watched the contrast go from crappy chalky looking disgusting mixed with cola, to a clear contrast in lemonade or can be mix with whatever you bring.  Huh??  That is what I said apparently I can bring whatever I want to drink to mix with my contrast…ugh News to me but apparently that has been an option for a while.   I think I may be the only Stage IV Breast Cancer patient that started treatment in the old Cancer Hospital that is now a walkway.  My jacked up Immune System and Cancer Requires, like Six Specialist doctor's all with clinic's in different locals around Chapel Hill and really none of them work on the same day. In the end only 1 gets the finally say on all treatments that would be my Oncologist.  

Scans are still NED, I actually read the result this time, and learned that I have:

Lungs:  Tiny subpleural right middle lobe nodule (4:37) is unchanged. No airspace consolidation or pleural effusion.

BONES:

Stable rounded sclerotic focus in the left glenoid, likely bone island, since the earliest available CT of December 2012.

What in the Hell is a bone island?  I guess I will have to do some googling.

More doctor’s appointments in the next two months, the month of December will bring forth the eye doctor.  My eyes are the most troubling and quickly becoming as expensive as the damage done and continued to the teeth.   I have yet to pinpoint what cause the eyes to flare, but it isn’t funny, headache, dizziness and a trip or two to the porcelain god from the nausea.  I have a feeling I have yet another infection or scratches on my cornea, not really looking forward to the trip.  After the other day I am going to have to find some good blackout curtains that match my decor, cause me and the sunrise are not good friend and it likes to disturb me by shining right on my freaking bed.

The month of January will bring forth two more appointments Dermatology and Rheumatology.   

My oncologist is concerned about some the damage my skin is getting from the prednisone and antibiotics I have to take to deal with the swelling and inflammation.  My skin I believe has become over sensitive, I literally got contact dermatitis from the tubing that delivered the contrast thru my port for my CT scan.  My oncologist thinks I may be coming allergic to the contrast as well since my left side was flushed after the scan.  I think some of the issues was the fact the Nurse that accessed my Port didn’t follow proper protocol,  normally after being accessed it is flushed with 2 saline syringes, and then the yellow syringe, and should have been flushed with 2 saline since I was getting blood drawn afterwards.  I told the male nurse when I got to the blood lab, he told me to call the nurse out next time and to tell them to follow protocol.  

Oh well, then I will be off to Rheumatology.   I am making a whole list for this appointment and hopefully I will remember to bring said list with me.  I definitely having serious issues with my feet crappy Raynaud’s and arthritis from Hades.   

Apparently from notes from my first bone scan I have degenerative arthritis in my left knee and both feet.  The cold weather is not helping the situation, the more I try to walk the more the foot acts up.  Funny thing is the pain and stiffness was originally when I would get up in the middle of the night.  Both feet are about the same but the right is little worse OK may be a lot since it hurts when you flex aka walking heal to toe.  I am pretty sure its is the arthritis and considering I had 2 surgeries on my right foot as a child may be why that foot is worse.   I have found that my flat sole wool lined boots are the most comfortable for the foot while also keeping them cozy and warm.  I need to get some fuzzy cool slippers for the house along with some fuzzy socks.

Oh and sleep where art thou?  Hopefully I will get my sleep back right now it is only a couple of hours which isn’t good.  Lack of sleep means a painfully day or days on the horizon.  Need my sleep so I can have some energy to finish organizing the workshop so I can open an ebay and etsy hop to make some extra cash.  

Exceed available Energy, Pain and Scan Anxiety weighing heavily

I definitely exceeded my available energy today, and now I am paying for it, hopefully the pain will stop when I attempt to sleep. I was cleaning up my Hobby/Play room so I can start creating and also opening my Online Toy/Comic etc shop, cause we be broke. I also moved my living space around so I can build a playground with a jungle gym so she will stay off the Barbie Malibu Mansion. She loves laying on the top trying to catch her tail thru the openings on the roof. She also uses as an obstacle course she will go to the top of the stairs and sprints very loudly down the stairs then slides as she makes the turn on the linoleum floor then leaps about 5 ft to the table holding the house races up and either slides down to the book case or stays on the pea for a while trying to get to the light fixture, swat a fly, or play on the peak of the house like it's a jungle gym.

I also created a hole for her to access the space underneath the staircase as her private space which is away from Loki (our male panther looking black cat who followed me home a couple months ago. He stays upstairs with Carrie, he is an indoor/outdoor cat, he stays out in the day and comes in around 9 pm for the night time. Riley doesn't care for him though he is beyond friendly and keeps trying to make friends and play. All Riley wants to do is the make sure he knows she is the Queen and Everything belongs to her. She knows when it is time for him to come in and stands on the staircase or near the staircase where Loki is sure to see him and she hisses at him. Though today she was too enthralled with her latest hiding space underneath the staircase that she forgot about Loki. Now she has 3 places to hide her high perch above the closet, her bunker underneath the staircase and her cushion shelf in the bathroom that has a view of the backyard and the tree the birds love to hang out on.

I also had to rearrange the furniture so I can put the ottoman bench back in front of the sofa so I can keep my feet propped up. I know from my bone scan that I have Osteoarthritis or the Degenerative Osteoarthritis I can't remember which one they said, it was in both feet, my left knee, my lower spine and my neck.  My next appointment is fast approaching just 7 days, where I will get blood taken, my port flushed and the dreaded scan. Which naturally means scan anxiety is in full force. The dreaded scan that will determine whether of not my parole from chemo is up or will I continue to dance with NED (no evidence of disease, basically the cancer is too small to pick up with scans). I am not really looking forward to it especially with new pains that have started to flare up. The pains are either the caner or Sjogren' either way the are a royal pain in the ass. 

As I am typing this I am trying to ignore the pain in my left knee and feet my medicine dulls the pain to make it bearable but doesn't get rid of it. Each day that passes means more medical bills as I am an "outliner" a "2%er" basically defying the odds by living past the "33 months" which is projected life expectancy of Stage IV patient. Here is a link to an article that gives insight to life as a Stage 4 patient http://www.medscape.com/viewarticle/854295?src=stfb.  

"Patients living longer with metastatic cancer are "pushing the boundaries" of what science and clinicians can explain in terms of survival, said Karen Gelmon, MD, a medical oncologist at the University of British Columbia, in Vancouver, Canada.

Long-term survivors feel like a "new species," for which healthcare providers ― especially oncologists ― were not necessarily prepared, Dr Gelmon told Medscape Medical News"

Thankful for me the Doctor in charge of the Resident Oncologist decided to keep me as her patient 6 months into my treatment as my Resident Onc had finished his rotation and was going to a clinic in the mountains.  Her specialty happened to be Multidisciplinary, at that time we had no clue the wild ride we were going to face.  Instead of brushing me off she listened to the pains and issues I described and figured out it was an Autoimmune issue, and being at a teaching hospital meant I could receive treatment at the same hospital.   A few test later and I was dx with an Autoimmune disorder called Sjogren's.  I had escaped chemo with little to no side effects to speak of except a sinus infection, well the Sjogren's made sure I felt basically all the side effects that the chemo's I was on had. 

The costs of treatment is beyond crazy even with insurance their still is the copay, I remember the first bill I got and the statement I got from the insurance showing who much the paid.  $15,000+ for ea chemo my part was like $2500 I happened to have 24 do the math, that was just the first chemo the other one being an older drug was like $500.  Then including the 7+ surgeries both cancer and sjogren's related, test after test, $70 copays, insurance is good but the cost is so outrageous and the longer I live the bigger my bills get.  Even tests and scans are an arm and leg, and I have had 1 PET Scan, 1 Bone Scan, 15+ CT Scans of chest/Abdomen, 30 Chest xrays, MRI of Brain, 4 cauterization of tear ducts, Sleep Study, exploratory GI surgery, Ultra Sound of Abdomen, Liver Biopsy while simultaneous getting a port installed on a hard table not in a normal surgery room with no laughing gas, Bilateral Mastectomy, Port removal of breast implant and taking extra skin off, 4 surgeries on my but to try and figure out what is causing and trying to correct Anal Fissure, Infection that hospitalized me, Walking Pneumonia, 30 days of radiation and the list can go on all this was a 2 year period.  

I have less intrusive tests since trying to get a handle on my Sjogren's due to my cancer my treatment has to be adjusted the normal protocol doesn't apply to me.. Life has become living 3 months at a time waiting for a bomb to go off, knowing that at some point the cancer is going to take you out the only question is when. 

#IamSusan

Groovy Trip down Memory Lane

I am pretty sure I overdid it this weekend, life has become a very delicate operation always trying to find the middle ground.  On Saturday I had to run to the drug store for medications, then watched my Uncle pull down trees with a excavator and seeing a huge snake drop a good distance as my Uncle pulled the stump out of the ground and up in the air. It was impressive Uncle Downy could easily take out 100 trees in a day not bad considering he is like 73 still working over 40's a week, and still finds time to shrimp and fish.  My other uncle (65) was cutting the tree's up, loading logs on his trailer moving them to his little lumber yard, then jumping on his tractor and pulling the log to the lumber yard.  my other uncle

Today spent more time outside climbing over logs and walking in the woods several times each time showing Skylar were the buried artifacts are in the woods.  I had used her metal detector during the week when she was at school and had marked some spots.   I showed her the military gas can I found, and a piece that at first glance looks like a portable toilet lid but then I was like its metal?  As I am cleaning the dirt off with my bare hands a thought came across hmmmmmm this might not be mud,  I could be wiping 19th century crap off with my hands and possible digging a latrine.  We dug out another hole by a large pine and found an old spool of wire. At the bone fire tonight with my cousins, aunt and sister I brought up our discover which lead inevitable to a trip down memory lane.  

From the 3 par put put course behind the now gone but forever loved tree house in the 1980's then it went to a little further back to late 1950 and 1960's.   My Aunt tells us how when they were little the military did exercises on the family land, we had heard in passing about it but had long forgotten.  She talked about the helicopters, the fact that they had left MRE's that her brothers discovered in the woods.  Then It hit me that is probably where the gas can came from and that spool of wire, makes me wounder what else we will find.   My aunt went on to tell us how they use to water the helicopters land, which made us remember as children how low the helicopters flew, being able to actually see the Marines in the copter.

She then talked about how the big planes would fly buy dumping chemicals to combat fire ants.   And how the Military planes would drop candy from the plane and they would come down via little parachutes.  I was thinking how cool that would be, but I highly doubt we ever see that again.  It kills me the stories of our parents childhood, I am hoping to document all them as I work on the family tree which is complicated due to small population up until the Military came to town.  Even our childhood is far better and more interesting than most kids these days who have no idea what an imagination is or how to play outside or create games with little or no equipment.  I remember not too long ago explaining to my double first cousins daughters how life was before the cell phone, computer and internet my Aunt was laughing they were all quiet there jaws dragging the floor, OMG wait how did u know when and where to meet ur friends...lol

In other news my cellphone crapped out a while ago so I have to wait till I get my check to get a cheap phone.  I still need to make an eye appointment and dermatology both are victims of my overactive immune system which has seemed to hit all systems.  I am pretty sure it is starting an all out attack on circulation which isn't good since my paternal family line has a history of veins turning into ulcers.  My next scan is in November and scan anxiety is already creeping into the mind.  It doesn't help that every since I missed that week of low dose Chemo pills my entire system has been out of sync.  The pain seems to be getting worse meaning less time to do things and more pain to clench your teeth thru.  North Carolina legislation and needs to get off their ass and approve medical marijuana like other states have been doing especially since it has already been proven by the federal gov't itself that it can relieve chronic pain and cure some cancer's.  I would prefer a drug that is cheaper and I can grow myself, so far I qualify for Medical Marijuana in all states that have passed it.

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.

Apoclypse ready? Maybe a trip to the Amazon or Congo

I decided to google my latest prescription provided to me by my lovely eye doctor, the drug is Minocyline and the list of things it has treated gave me a little chuckle.   Here is the list from Wikipedia:

A list of indications for which minocycline has been used include;

·         Amoebic dysentery

·         Anthrax

·         Bubonic plague

·         Cholera

·         Ehrlichiosis

·         Gonorrhea (when penicillin cannot be given)

·         Gougerot-Carteaud syndrome (confluent and reticulated papillomatosis)

·         Hidradenitis suppurativa

·         HIV—for use as an adjuvant to HAART^[15]

·         Periodontal disease

·         Perioral dermatitis^[16]

·         Respiratory infections such as pneumonia

·         Rocky Mountain spotted fever

·         Rosacea

·         Syphilis (when penicillin cannot be given)

·         Urinary tract infections, rectal infections, and infections of the cervix caused by certain microbes

http://en.wikipedia.org/wiki/Minocycline#Anti-inflammatory_and_neuroprotective

By looking at the list I believe I am prepared for the apocalypse, I am already taking the drug used to treat Malaria so I am good to roam around tropical jungles in the Congo or the Amazon.  Now I am taking another drug that will ensure in the event of Plague or Anthrax attack I will be one of survivors.

Apparently now I just need to build me a bunker, bury some gold, stock pile some guns, bows, bullets and ammo and get some crates of water and MRE's.  LOLl

Eye Doctor Visit results in more Prescriptions like I didn't have enough already

Yet even more prescriptions added and it would be more expensive crap, my bank account wasn't happy when the cost of this trip to Walgreen's flashed $109.05 which I did not budget for and I have to fill my Nexium next week which is $60 more bucks, (unless I can find a coupon I actually qualify for.)

On the bright side my eye doctor finally got my insurance company to approve Restasis which is freaking $60 buck a roos, hopefully it will help with my severe dry eyes. I am crossing the fingers in hopes that this helps since the only other thing that helps is Prednisone, but my Rheumatolist will not allow me to take Prednisone long term.  Why? apparently the side effects, which by the way I am not normal and my body reacts for the most part opposite of normal so what ever is listed, the opposite applies to me, and to top if off my entire family (both sides mind you) have taken this drug for extended time like freaking decades.

Like usual I figure out a trend with my drugs, and I then test my theory, I noticed that every time I was on Prednisone ALL my inflammation disappears when I take it, to prove, I managed to convince him to give me a month's worth and this past December was the first time in over 2 years that I felt normal and could go outside with no sun glasses on.

The funniest thing of all I normally get a week or 2 worth when my partoid glands flare.  Guess what started to flare this week, lol, my left partoid gland is freaking swelling up big time.  My Oncologhist and my freaking eye doctor both understand and agreed when I explained why I should be allowed to have Prednisone long-term, but I have to convince my Rheumatologist.

Back to my eye appointment,  I learned that the glands on the bottom of my eyes the ones that have been inflamed is due to my one of many skin issues lovely Rosacea, which I totally forgot I had along with the Eczema/Contact Dermatitis (mostly hands and knees) and Psoriasis (Scalp and Elbows). .  Ugh, so I now have to take an antibiotic called Minocycline that has a side effect of Photosenstivity, hmmm yeah I already have that in spades at least it only cost $5.  Problem is the pharmacy only had like 5 pills so I will have to go back hopefully soon to get the rest of that prescription along with my Evoac Prescription.  Over the counter wise I had to pick up Thera Tears SteriLid eyelid cleanser, according to my instructions on the printout from my Doctor I have to use this 4 times a week.  Not sure how long this one small bottle is going to last hopefully a month since it is $15 buck a roos.

As I figured the trip to Chapel Hill drained the body allot the crappy weather didn't help either to top it off it looks like a very bad flare is taking hold of my body.  When we got back from the Hill the girls and Tonya stopped in to visit, and then Skylar wanted to watch Ghostbusters 2, since we had watched the first one over the weekend.  By the time the  movie ended it was Skylar bed time, Carrie actually had already passed out and not too long later I hit the sack.  Yeah I woke up the next morning long enough to watch some Dog the Bounty Hunter, eat some food take my medicine which was late, meaning my body wasn't very happy and was hurting.

Once the meds took effect I went back to bed, I was briefly awoken as kitty was pawing me to see if it was safe to snuggle since it was cold, once she determined I was too tired to toss and turn she snuggled between my calves.  So we Sleep from 11pm to 9am then 11am to 5pm.   If the body is still aching and the gland swollen on Sunday I will have to email the doctor for some Prednisone, and email both my rheumatologist and oncologist about the pain and soreness.

My next appointment will be my oncologist in Feb and then Rheumatology in March.  I also still need to make appointment with my ENT, Dermatologist, GI Doctor and GYN.  I am not looking forward to the Dermatologist cause I need to get my prescriptions which will not make my bank account happy,    And lets not forget the dentist but I have to get some insurance for that first another expensive appointment that I can't afford anytime soon which doesn't bod well for my teeth that haven't been capped and are crumbling as I type.  Already had to that have crumbled away and another that is in the very back that is half way gone.  All because I have no saliva and a mouth that is drier than the Sahara Desert.

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.