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. 

Long day at Hospital Neurology Department

Had no idea it was going to take as long as it did, my appointment was at 1230 for a Electromyogram (EMG) and Nerve Conduction Study  but I didn't get called back till  1pm.  I new something was up when he took the results and stepped back saying the big Dog wanted more, shortly after another Doctor comes and I quickly learn he is the Ultra Sound dude and then a 3rd doctor comes in she was in charge of noting all the findings on some sheet of paper and this being a teaching hospital the Ultra Sound dude was pointing out things and asking her questions as they noted all the issues seen.   Apparently I have a cyst dude was like did you know........um no sorry doc but my X-ray vision is on the fritz.  The took pictures of the cyst measuring getting a profile view and then mentioned some other test to the girl doctor that I am guessing I will be getting later.

I haven't officially be giving a diagnosis yet, still have to wait for the rest of my medical team to review all the tests and imaging.  But from what I gathered Carpal Tendon Syndrome in both hands which wasn't a shock since I was dx at 16 with Carpal tendon due to an injury on the Clock with Wal-Mart (Workers Comp) that is how I made my escape to the sales floor.  There is muscle damage to what extent I don't now on the left arm since he  made a comment it had the worse readings from the nerve test. Some sensory loss, peripheral damage (which I had already guessed) from the chemo.  My legs apparently didn't show any damage to muscle since they didn't due a nerve to muscle test on them.  Every-time I thought I was done the Big Dog wanted even more test on my hand, apparently they were checking my clutching reflex kept buzzing in my palm, and apparently my nerves were not cooperating.  He made a comment that all my doctor's say your unique, apparently it is very hard to let alone find but to shock my nerves...lol

When they finally said I could get dress and go you didn't have to tell me twice in record speed I was dressed and out the door at 5pm.  Great 5 o'clock traffic in the Triangle took an hour from the hospital to 40, with a quick stop to a soda and chips since the radio done told me traffic was at a stand still from exit 274 to 276 and I would be entering freeway at exit 273.   Apparently during this time I missed to calls from UNC, apparently I did get out of the in time...lol... They didn't leave a message so I am not sure which department it was and they didn't leave a message so not sure what to think, but in the past isn't always Rosy when they don't leave a message.

My Rheumatologist told me if I hadn't heard from him with 2 weeks from the time I had the study to give him a call so it could be a while.  This cyst I feel may be a big pain in the ass since a Cyst in my butt muscle has sent me to the ER 3 times, where I was admitted and rolled straight into surgery and filled with antibiotics.   And Basically with that one due to its location there isn't any way to fix it, besides draining it, and antibiotics.

These trips to Raleigh/Chapel Hill has been very unkind to my sinus so it looks like next month I will need to visit an ENT when I have money so I can get antibiotics.  I also got to make an appointment with dermatology to check my skin and issues I have been having and see if there is any other lotions that will help.  Then a call to Walgreen's to see how much money I need from my lotion which I can almost guarantee $100 or more with insurance and coupon so that one will have to wait till payday too.  I should have enough to pick up my Chemo pills.   Ugh still have a lot of medical and disability paperwork to fill out, the problem is remembering to do it and energy and concentration required to finish said paperwork.

Fatigue wise I thought it was pretty much under-control....loll my ass I have basically sleep  the last week away getting up to eat, drink, pee, watch a little TV/Computer and back to sleep.  The multiple appointments last week played a little into it but it was already building.  My body basically fells worse than it has ever all the muscles feel strained and beaten ache like I just ran the Boston Marathon, my joints inflamed and throbbing, veins bulging on my left temple, sharp pain behind the left eye, pain behind the ear, sinus draining down back of  my throat, strange numb feeling in cheek sinus cavity, along with the nose that loves to bleed, whole body weakness, muscles feeling like the are burning just like the eyes.  And if that wasn't enough the hoarseness and burning sensation of the throat (different burning than that felt my acid reflux which I take nexium for)  All these things means no sleep for me, even if I manage to turn off or tone down my imagination and brain laying in bed, even relaxing the body the aching, burning and pain leads to some rest but no sleep past REM.  I have realized that no matter what time I  have an appointment the next day I can never seem to sleep.

I will definitely have to start a calendar and have family/friends go with me to , I would write more but my eyes have said no as they are starting to blur, white screens and light not good for em.

Good Article About Sjogren's

http://www.nytimes.com/2011/09/02/sports/tennis/for-those-with-sjogrens-syndrome-there-are-no-easy-answers.html?_r=0

A few excerpts from article:

"It often starts out as an uncomfortable feeling in the eyes and mouth. Patients say their eyes are dry and red, even though they are using eye drops. Often too, they say, their mouths are dry. Food is becoming tasteless. Some get swollen glands in their necks, making it look like they have mumps."

"It turns out those are the hallmark clinical signs of Sjogren’s syndrome, a mysterious disease caused by an overproduction of B lymphocytes, the cells of the immune system that make antibodies. The deluge of B cells clogs glands. Some people have trouble perspiring because their sweat glands are obstructed. Or they have trouble digesting food. Women may have pain during intercourse because their vaginas become dry."

"When Venus Williams said the disease made her feel tired, she was right. Patients with Sjogren’s, like those with the related diseases rheumatoid arthritis and lupus, are unusually tired, and there is no way to alleviate this sensation. Investigators have studied lupus patients, asking how much oxygen they consume when they exercise, and found that they use much more than healthy people, although no one knows why that is so."

Forever Flaring

It is quite frustrating getting a good groove on, sleeping on a schedule for most part keeping flares/pains/aggravations under control and then BAM….Something derails the train.  

For a while I was sleeping to till 7am to 5pm then it move back a little then I had to adjust my sleeping time in order to attend family events.   That is when the train ran off the tracks, periodically I had gotten the groggy throat sjogren’s attacking my throat and voice box, but not to this level.  I ended up sleeping for 48 hours waking up for short time to eat and drink and then back to sleep trying to get back on a schedule. 

Throughout this time I was also have issues with my eyes, burning, blurry vision, that has prevented from doing some of my favorite pastimes, writing and reading.  Finally got back to see the eye doctor I saw first and he wasn’t too happy about the job one of the residents did with my eye plugs. 

In 2012 I had the plugs put in and the resident had problems placing the plug in my left eye and ended up cutting the plug down some.  As I told the Eye Doc this he had a skeptical look on his face until he looked in my eyes, low and behold the right plug was missing in action and the left was half way in and half way out, and it had been cut down in an attempt to fit.  What are eye plugs???

Main article: Punctal plug

Punctal plugs are inserted into the puncta to block tear drainage.^[7] For people who have not found dry eye relief with drugs, punctal plugs may help.^[7] They are reserved for people with moderate or severe dry eye when other medical treatment has not been adequate.^[7]

The girls also did a test called :  Schirmer's test measures the production of tears: a strip of filter paper is held inside the lower eyelid for five minutes, and its wetness is then measured with a ruler. Producing less than five millilitres of liquid is usually indicative of Sjögren's syndrome. This measurement analysis vary among patients depending on other eye related conditions and medications that they are on when the test is taken.^[19]  And guess the result for Heidi that will be I had absolutely NO TEARS, bone dry baby.

So what to do well apparently a q-tip and a hot rod…………and a process called Cauterization.  So what is this you speak of well a little goggle search and on wiki:  “If punctal plugs are effective, thermal^[8] or electric^[1] cauterization of puncti can be performed. In thermal cauterization, a local anesthetic is used, and then a hot wire is applied.^[8] This shrinks the drainage area tissues and causes scarring, which closes the tear duct.^[8]”    So lidocaine, needles then a burning sensation, didn’t feel the needle in the eye but damn sure felt the burning.

This process helped for a few days but as I figured it is simple impossible to keep my eyes from being dry, 4 to 6 preservative free drips a day in my eyes and use a thicker gel for night time gives little relief.  Thank-fully my next appointment is set for May where they will either put plugs or cauterize my upper tear ducts. 

Like my eyes being dry so is my mouth which leads to thrush, sores, burning tongue and trying to find toothpaste that doesn't cause pain has become a task.  Frustrating when u literally do a fidgeting dance trying to brush your teeth as your mouth is burning, using a paper towel to try and dab your tongue in hopes of stemming the pain/irritation.  Then spend the next 2 hours waiting for the swelling and burning of your mouth to stop.

Next up is to test my nerves to see what damage may have been done from chemo, and if the Sjogren’s is now affecting the nervous system.   Hopefully this will provide some information and explain some of the pain, numbness and other issues that has been plaguing me on and off since my adventure began in 2008.

Hydro Network: My hobby escape from Medical Land

http://heidyplayscalediorama.blogspot.com/2014/04/picture-day.html

Long Overdue Update

It is funny looking back as a kid and teen rejecting your parent’s style, I remember when my mom redid the bedroom finally having time during her battle with cancer.   I was like whatever floats your boat not my style, know the one thing I did like is the upholstery she picked out for two antique chairs she picked up at a consignment shop for my 1^st unfurnished apartment.  The print is red with golden dragon fly’s little did I know a decade later I would be using that as a palate in redoing the Garage.  Now all of the items except the vanity that is in Rene living is coming back to be used.  Items back then when shook our heads out and now the furniture is going to be back on display.  Even that ugly round jewelry thing is even staying though it shall be redone. 

Speaking of flashbacks, I remember KB my coworker finding me my first sofa,  you can find all kinds of stuff at the end of the semester, those out staters leave everything on the corner, KB and I believe Eric helped load it and up and take it to my living room.  It was the ugliest plaid sofa ever, a quick trip to Walmart for a cover and some cleaner.  Had the sofa for a year till Mom showed up and bought me a sofa, then took me to the flea market for a frame and mattress (yeah and when I read an article about bed begs, I bought me a new set like 5 years later…lol) I was sleeping on a mattress I believe was borrowed from my another Aunt and Uncle Chellie and Hubert if I am not mistaken.  My recliner came from my Aunt had it through all five years of college, 3 apartments till it finally died got about 8 years that was just me, it was about 15 when I got…lol….  Dad bought me a new one around 2007 for Christmas, it too is on its last leg, but will have to last longer, have to get Carrie to perform surgery on her. 

I did buy a unfinished table for dinning but who uses a dining room it is now my work station or will be when I get in my Workshop down here.  My first dinning set that mom bought went to Dad and the Garage it didn’t last long, Noland is getting good use out of my washer and dryer that um…yeah Mom bought.  I hear what did you buy…ummm The George Forman, the wok, and all my electronics, and a car.

Back to fixing up the studio with no stairs I was happy to discover the upholstery mom used on my chair that I picked out is still available (pic on left).  I want to sew it on the front of my Black out curtains, which will be surrounding my bed so I can block out light.  I may have to take my cousin Bobbi offer in helping with any sewing needed.  My plan is to see if Ervin and Hubert can help us building I guess you can call it a free standing canopy.  I want to keep the antique bed my mom bought but due to my light sensitive and my design them I need a canopy, my plan is to have it go to the ceiling with crown molding. The canopy I have in mind is like the pic on the right except the banister and frame would be attached to the front and side wall instead of the bed.   And yes an aspect of my design is part Harry Potter Victorian Era, a little Steam Punk, Witchcraft kinda feel.  This pillow mom bought me actually has my color scheme which also happens to include colors of Gryffindor…

Why this obsession with Harry Potter?  Witches and shape-shifter human to wolf, has always been my favorite genre by far, I grew up watching Charmed, I dream of genie, and Bewitched.  That and I believe it was after the 6^th film of Harry Potter the Half Blooded Prince, that I got dx with Stage IV.  My goal was to read all the books and see all the movies before I died, after the last movie my goal was to go Universal, did that, now it is to go back when the open the other side Diagon Alley and London, and also go to England to the Harry Potter Sets.

 On the health front still crappy damn if I do and damn if I don’t, do nothing swelling less pain, do something pain, and even more pain and more swelling….lol……..They have increased the Methoxtrate which appears not to be doing very much except making my injuries take longer to heal.  Heat means my joints are less likely to hurt but the eyes will as the dryness and burning sensation take full stage and the dry mouth which means way too many bathroom breaks at night.  No or little heat means pain from hell and my joints literally not figuratively freeze but hey my eyes want be dry.  I have got to email the doctor’s about the heat rash since I am on the Methoxtrate currently have zinc oxide covering it but it doesn’t fell normal feels like a very bad sun burn.

On the bright side it is a lot easier being one level being able to open the door and take a walk in the woods under the shade.  Although I now have to wear my shades even more including indoors, and having to use a flashlight to light the book page so I can read it, is a pain.   I have to email the cancer hospital to get me into to see the eye doctor; I call no appts available my buddy from the Cancer Center Calls and Bam an appointment whenever I want……

In summary my sjogren’s is going wild, arthritis running wild, swelling, retaining water, burning eyes, and swollen glands, and pains I am not quite sure what is causing it.   The experts say exercise will help the pain, yeah well my joints apparently have a different manual, my Raynauds is also getting worse, trying to keep that under-control means the eyes take hit…ughhhhh.  I also got to fill out SSDI papers and figure how much money I don't have...lol............