Light Sensitivity Sucks

You have no idea how frustrating that something like steeping outside to empty scraps cans initiation a flare of my autoimmune.  The flare is like being on top of a mountain making a snowball and rolling it down, and by the time he reaches the base the tennis ball is a wrecking ball.  Really any change can cause a cascading effect that disrupts daily function and can become very painful.

As of late as seen by previous post my eyes are the latest organ/body part that is taking a beating from the daily attacks.  As this year has progressed the issues with my eyes especially sensitivity to light, the dryness of the eyes itself causes light sensitivity for my eyes, while the drugs I also take can cause light sensitivity. 

As long as I stay in the pitch black with shades on and do nothing I can decrease chances of having a flare.  But really who wants to be stuck in a dark room like your Count Dracula waiting for the sun to go down.   So what is so bad about light?

Light indoor and outdoor triggers inflammation that starts in my eye and ripples down to other areas.   The inflammation of the eye feels the eyes like are pulsating, and if sun glasses aren’t put on immediately it can cause an epic flare that ripples through the body.   From the eyes the inflammation rolls down to  my parotid gland making me look like I am a cousin to Alvin and the Chipmunks.  The inflammation causes the saliva to back up cause it can’t get out  which can swell and even get hard as saliva fills up the space causing intense pulsating pain.  If that was enough the swelling wraps around the Eustachian tube straggling it causing another pain which is sharp pain, then the pressure moves on to the sinus cavity under your eye, while the glands along your jaw line also swell.

This is what happens if I leave the lights onto long and the culprit for the pain the LIGHT BULB.  Yes I said the light bulb because Europe and now the USA banned the traditional light bulb for bulbs that save energy.  I am all for saving money and energy the problem is the NEW light bulbs are BAD BAD VERY BAD for many with autoimmune disorders.  The bulbs I need are NOT carried in stores, luckily as with in law there is a loop hole and a company can make the old school indacscent light bulb with a name change.  So now I have to buy a box of light bulbs off line.

Thank-full the new My UNC Health link allows me to access my doctor's quickly, had to call in a prescription for steroids to try and get the inflammation under control.  I also got to figure out how in the crap I am going to afford the new eye get I will need for my eyes, since I have to have Preservative free the cost is freaking TRIPLE.  Literally my pharmacy bill will likely tip to $1000 a month if I want to be able to function and actual be able to do things with serious consequences.   Currently trying to figure out which brand to use how much it cost, and if I kind find coupons to reduce the cost. 

Painful Eyes

The lights off blinds pulled shut, the laptop on very low light, and a pair of shades on top of the head ready at a moments noticed.  A simple look out the window can cause instant pain, even walking around a store with just my shades cause pain meaning I have to put my shades shades on or what Tonya calls them Grandma Glasses.   Even with the blinds closed light still filters thru especially when the sun rises which is PAINFULLY in the morning, I rolled over this morning opened my eyes and immediately had to grab my shades and some pain meds.   I thought the pain from my torn ACL was bad but light sensitivity is far worse.

Right now it is 2 prednisone eye drops a day and Ak-poly-bac gel once a day and pain medicine.   I go back in the middle of the month to see if my latest inflammation and infection has cleared up. 

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

Another pill really? Now on board Gabapentin

If I am not mistaken this was one of the drugs mentioned by the neurologist when my sleep study was done but the Gastro doctors wanted another drug.  My Rheumatologist actually wanted to put me on Lyrica but my insurance company said no it had to be Gabapentin.   I had to get money from my sister to get this latest medication, over the last 3 months my Pharmacy bill has exploded due to my immune system savage attack on my eyes.  The month of September is not going to be a good month, I want to attend the Metastic Breast Cancer Convention being held at chapel hill on Sept. 19-21st but not sure if that will be possible since I will have a pre-op appt on Sept 17th and day surgery Sept 30th which means money spent traveling to and from the coast. http://mbcn.org/

Back to the new drug, this drug is being used to address soft tissue pain as my Rheumatologist put it, basically when I wake up 90% of the time it feels like I have been pelted with paint balls or worked out for 12 hours.  I also periodically thru the day have the feeling of muscle soreness after doing simple tasks as washing dishes and even when in rest mode.   I am already taken Flexeril for the fibromaylagia whose side effect is dry mouth (which is already really bad before the meds), we had already tried switching to Cymbalta and that was a complete failure.  It didn't take long for me and my Oncologist to figure out exactly how much pain the flexeril was blocking.  So the plan is now to take the Flexeril at night only instead 3x a day and take the new drug Gabapentin 2x a day.

On top of all that the nerve test I had a couple of months ago confirmed what Dr. R thought was causing all the issues with my hands severe carpal tunnel in both hands.  This isn't the first time I heard the word Carpal Tunnel that is how I got off the register at Walmart and on the floor.  I was scanning a bucket of kitty on register 1 (before the remodel when McDonald's was still in Walmart)  when not only me but the girls at the Service desk heard the pop, me almost drop the F-bomb as the kitty litter lands harmlessly on the counter.  Even the CSM heard and I was sent to the back handed worker comp papers and was off to Urgent Care.  Funny thing fast forward  20 years and the spot where the tendon popped is a ganglion that apparently has been there a significant time to the point where my body re-routed nerves and veins around it.  So I wonder if Walmart can pick up what my insurance didn't cover for the nerve test since after all it is the Cash Register and the Kitty litter fault....lol..................I have 2 options shots that want last long or surgery, I took option 3 neither...and those wrist guards they say use are freaking useless and actually causes me more pain.

I am working on 2 more in-dept post the first  I will be focusing on the anatomy of the eyes and explaining treatments in depth there has been some confusing and many questions such as why cauterize tear ducts?  Also taking an in-depth look at Gabapentin.

Eyes are Underattack

Recap What is Sjogrens?

Sjogren's syndrome is a disease that causes dryness in your mouth and eyes. It can also lead to dryness in other places that need moisture, such as your nose, throat and skin. Most people who get Sjogren's syndrome are older than 40. Nine of 10 are women. Sjogren's syndrome is sometimes linked to rheumatic problems such asrheumatoid arthritis.

Sjogren's syndrome is an autoimmune disease. If you have an autoimmune disease, your immune system, which is supposed to fight disease, mistakenly attacks parts of your own body. In Sjogren's syndrome, your immune system attacks the glands that make tears and saliva. It may also affect your joints, lungs, kidneys, blood vessels, digestive organs and nerves. The main symptoms are:

• Dry eyes
• Dry mouth

Treatment focuses on relieving symptoms.

NIH: National Institute of Arthritis and Musculoskeletal and Skin Diseases

http://www.nlm.nih.gov/medlineplus/sjogrenssyndrome.html

The cause of Sjögren's syndrome is not known, but it is considered an autoimmune disorder.

Normally, the immune system acts to protect the body from external threats like germs. When a person has an autoimmune disease, the immune system attacks the body instead.

If you have Sjögren's syndrome, this attack typically starts with your moisture-producing glands, which are called the exocrine glands. You need healthy exocrine glands to produce saliva and tears. These glands also produce moisture needed in the vaginal area, and in the gastrointestinal tract (stomach and intestine) and respiratory tract (airway and lungs). If your exocrine glands fail to create enough moisture, you may experience a number of uncomfortable symptoms.

People with this disease have abnormal proteins in their blood suggesting that their immune system, which normally functions to protect the body against cancers and invading infections, is reacting against their own tissue. The decreased production of tears and saliva seen in Sjögren's syndrome occurs when the glands that produce these fluids are damaged by inflammation. Research suggests that genetic factors and possibly viral infections (as yet unidentified) may predispose people to developing this condition.

Researchers think Sjögren's syndrome is caused by a combination of genetic and environmental factors. Several different genes appear to be involved, but scientists are not certain exactly which ones are linked to the disease since different genes seem to play a role in different people. For example, there is one gene that predisposes Caucasians to the disease. Other genes are linked to Sjögren's in people of Japanese, Chinese and African American descent. However simply having one of these genes will not cause a person to develop the disease. Some sort of trigger must activate the immune system.

http://www.irishhealth.com/article.html?con=623

Now to the latest attack if destrouing my teeth, having glands forever swollen that at times can throb for hours and no amount of pain medication stops it, my only recourse is first massaging it out and if that doesn't work a prescription of Predisone.   My sinus continue to drain 24-7 something that began in 2008 when I started Chemo and hasn't ended, it drains down my throat  phlegm constantly changing color clear, white, yellow, green then start all over again..  It flows down creating other issues coughing as the phlegm gets stuck in my dry throat, or makes it down to my stomach upsetting it and if it is in the morning I will end up throwing it up causes it sends me into a coughing fit that results in anything in the stomach coming up and if there isn't anything than hello stomach acid.   For the most part I am use to the sinus infections and increase sleep when I realize an infection is trying to start, I have to keep a close eye cause Brochitis and Walking Pneumia are two of my new best friends,  looking back thru my medical journal we have determined I have had Sjogren's since I was 6 months old.   I was plagued with ear infections since I was born and constantly have swollen Eustachian tubes that effected my hearing during my early years that resulted in intense Speech Therapy in Elementary school that was suppose to continue till  I graduated but the fact I was shipped off to Tabernacle an almost hour bus trip to school that didn't have the money for a Speech therapist and at that time the plant my dad had worked at for 15 years had closed meaning no money for a private tutor.   I would learn in my last year in college that I qualified and could have gotten assistance in college, after a professor asked if English was my 2nd language, I said no and said I had been in speech therapy, apparently I never learned certain syllables due to decrease in hearing at certain levels.   As the years have passed my immune system has chipped away at my hearing if English isn't your first language, best text me, and if your from India like most computer help lines don't even bother calling.

I have to wait till next month to make an appointment to get my ear's checked at the ENT since my Eustachian tubes are swollen shut and sinus are draining, then off to Dermatology to figure out what is causing red spots with intense itching when I go outside and sweat just a little.  Staying inside and limiting water and anything else that is a chemical or has perfume off my skin, so much better no more red, cracked, painful hands.   It sucks though since I love the outdoors and the beach but at this point is my enemy.

Now to the latest victim of Sjogren's my Eye's, there is no way to describe the pain caused when one's eye is dry, and having to wear glasses when ever you are up and especially when going outside.  My oncologist jaw dropped when I read off the list of shit that has happened since she saw me in April.

 Dry Eye Syndrome (DES)

Still waiting for the Surgical Girl to call about setting up my appointment to get all 4 tear ducts cauterized, yes this can be done in office with numbing agents and needles.  Let's just say my experience with this didn't go over well many of you may have read my posts on facebook about those adventures. .

I am looking over my paperwork the new system UNC has implemented to see what exactly is going on with my eyes, the constant which is the Primary symptom of Dry Eye that is listed all reports then starting in April in order:

Visit 1
Dry mouth and eyes
Dry eye Syndrome
Disorder of Eye Region
Posterior bepharitis
Plugs removed, scratch on cornea found, in office cauterization of top tear ducts,  Numbing worked good, didn't feel the needles but sure felt the burning of the dang torch.  Felt like I was in a horror movie a orange ember coming towards my eye and burning skin smell...ugh...

Visit 2
Dry mouth and eyes
Dry Eye Syndrome
Eye Disorder
Sty, Internal
Tear ducts reopened, cauterization of bottom tear ducts in office.  This time around they left the numbing gauze in too long which irritated and dried my already dry eyes out, and the needles nothing like feeling the pinch of a needle in your EYE..............Will not be awake ever again for this procedure, although I didn't feel the burn this time if that is any compensation.

Visit 3
Disorder of cornea of eye-Primary
Dry eye syndrome
Inflammation of the cornea and conjunctiva of eye
Discovered Tear Ducts have reopened AGAIN

The nurses were a little taken back at how laid back I was considering how bad my eyes are, and the level of pain they cause.  My reply there isn't anything I can do about it, and when you have been dealing with the "bad news" that you hear rolling out of the doctors mouth since 2008, you come to a point of saying whatever.

For the most part I am stuck inside tell the sunsets or the clouds and rain take over which sucks.  My eyes are constantly gritty, burning, throbbing, light sensitive which is exasperated due to 2 drugs whose side effects are wait...........may cause Light Sensitivity...Really?

I guess my anthem or entrance music should be "I wear my sunglasses at night..so I..."

And the crappy dx continue

Not a good sign when the eye doctor states I haven't seen this in an eye for a LONNNNNNNNNNNNNNNNNNNG time.  Really only I would get something that shocks a doctor who has been in the business longer than I have been alive.  On top of that I have already had both my top and bottom tear ducts cauterized and apparently they have reopened.   To make it worse I have the smallest tear ducts they have ever seen.   Many may remember my description of needles and the smell of skin burning in a previous post they wanted to do it in the office again, me HELLLLLLLLLLLLLLLLLLLLL NOOOOOOOO, so that means I have to be put to sleep and get in done in the OR.  So now I am waiting for the surgery coordinator to call and schedule some surgery that is probably gone to be expensive as hell.

I didn't catch all the terms the eye doctor was throwing out but apparently my eyes are REALLY Bad to the point the doctor was apologizing.  Basically my eyes are seriously  inflamed he rattled off 3 distinct areas of 2 in my left eye and one in my right eye. So I get to add more than likely very expensive steroid eye drops to go along with the already expensive night gel.  So not looking forward to going to the pharmacy where there is already a $40 lotion for my hands waiting with my new eye medicine.

One of the new words in my vocabulary is "Superior limbic keratoconjunctivitis is characterized as an inflammation of the superior bulbar conjunctiva with predominant involvement of the superior limbus, an adjacent epithelial keratitis, and a papillary hypertrophy of the upper tarsal conjunctiva."     

This is making me really nervous since I am having issues with my ears as of late, and the fact I have always had issues with my Eustachian tubes being swelling, which more than likely means my ears are under attack as well, so that will be another fun appointment.  Unlike my eyes my ears I believe have been under attack since I was 6 months old, since only steroid shots worked when my Eustachian tubes swelled.  

Tomorrow I will need to reschedule my Rheumatology Appt., make an Appt with the ENT to check the Ears, Oncologist to scan my ass to check on my cancer, the Dermatologist to figure out the freaking red spots on my skin, and no telling who else oh yeah the Dentist which may be a long time off since Dental insurance is crap and you have to pay upfront so that appointment will be a lonngggggggg way off.   When I say expensive we are still paying off $12,000 from the Chemo and Sjogren's.

Light Frustration

Apparently I had the overhead lights on to long and the blinds open waiting for the mail man who never showed meant a very painful eye.   My left eye seems to be worse than my right I guess that has to do with the glands on that side being more swollen.  My ENT believes that the radiation I received to fight my cancer further damaged the glands. 

The pain is excruciating a pulsing behind the eye, the cheek red and inflamed, tenderness to touch the check bone and gland, the veins on my temple pulsating kinda like the incredible hulk veins as he is about to turn...lol.  It took about an hour after I cut the over head light off and closed the blinds for the pain to subside, but I still have slight bulging behind the eye but the intense pain has subsided.  I only have to lamps on which have incandescent bulbs, which tragically are being phased out due to the government.  I am all for energy conservation but not at the risk to my health, the new energy light bulbs are not good for Sjogren's Patients.  Florescent lights are bad for the eyes and some of these new lights are bad for your health, LED lights can cause damage to one's eye,   On top of that Compact fluorescent light bulbs, or CFLs, emit high levels of ultraviolet (UV) radiation. 

Outdoors and Beach are my favorite past-times but now I have to watch and limit my exposure to the sun.  I remember as a child spending all day at the beach mom making us get up at the crack of dawn and we were at the beach by 8 or 9 am and stayed till 2 to 3 pm.  On the way home a stop at Hardees for some chicken, a shower once we get home and nine times out of ten a nap was called for.   Those were the days when there was no car seats and mom drove around with 6 to 12 kids piled into the station wagon, age determining seating which meant my ass was always in the trunk. 

Hopefully with long sleeve my floppy hat and some wrap around sunglasses I will be able to go at least a couple of times.  My hope is I will be able to spend most of my time in the water body boarding of just swimming.   Still waiting for the possibility of a skate rink reopening with new ownership but not holding breath.  Trying to see if I can find a rink closer than the one's in Wilmington. .What I need is to win some money in a lottery purchase some land and build in an indoor/outdoor skate rink, arcade, lazer tag, play ground and put put.  Why?  Cause kids have absolutetly nothing to do and don't say City and County Recreation.  I was an intern for the city and if I had a kid he/she would never be in any after school or summer program it was basically a place for the kids to run wild doing what ever, when ever, where ever.  I guess i had high expectations being trained counselor for the YMCA and Camp Seafarer.

Are city yes it is a city has a mean age of 26 meaning lots of kids from 0 to 18 that need guidance and a place to hang to meet new friends.  I did a cost analyst on my Skate Rink/Play Place and one would have no problem making ends meets and provided the city a service.  It would be year around with camps for kids on traditional calendars, those on tracks, and after school day care.  Enough on that long lost will never happen plan.

I go back to UNC eye clinic on Monday not really looking forward too it, since it hurt like crazy last time.  But I want to find a semi solution for this eye flare that seems to get worse as the days past.   Not being able to read or write on my computer for more than 5 minutes is frustration and blurry vision is aggravating   There was a time I could read a 900 page book in a day sadly that is nolonger the case.  Even typing this is a task in its self, no tears means my vision is blurry, even though I have 20/20 vision I need a magnifying glass to read it.  I also need light but since I can't have overhead I have to use a flashlight. 

The extreme fatigue seems to be slowly creeping back with last month being busy with doctor appointments and a funeral.  Sadly my cousin who was dx with Triple Negative Breast Cancer almost a year after me lost her battle rather suddenly.  Talked to her a week prior about her latest treatment, thought about her the Sunday before her desk, was going to call her on Monday but that dread brain fog I forgot then on Tuesday she was free from Pain.  

Cancer has taking way too many in my family my Aunt Annette in 1996, my mom in 2006 and now my cousin Brenda 2014.  We also lost our young cousin to ALS she atleast got to meet her goal of reaching high school, and 16.