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............

Dreaded Winter Season

Winter means the heater is kicked into high gear which in turn will drastically increase flares from the dreaded Sjogren's.  Had a rude awaken this morning nose stopped up, joints flaming, mouth & throat bone dry, and thick mucus running down the back of my throat.

Hoping that the impending move back to the coast will help to relieve some of the flaring, since I seem to have less flares in the less congested coast.  Yes military traffic is bad but you guys haven't lived in Raleigh over 10 years it is far worse up here.

Still have a lot to still do up in Raleigh, paperwork, doctor appointments and more decisions that will effect the rest of my life.  We defiantly have to get out of this apartment no overtime means that my income is significantly less as is like almost $10,000 different and will be a lot less once I either run out of sick/vacation or cash that out and start receiving 50% of my pay on short term.   I have already been emailed paperwork for Long Term Disability, ugh decisions, decisions.   Less pay sadly doesn't mean less bills, I have dreaded logging in to UNC Healthlink to see the bill from the trip to the ER this month, I have a feeling I may break the $10,000 mark with the hospital.  Going to have to negotiate a much lower payment no way in hell I can pay $230 a month, I should qualify for assistance once I start only getting 50% of my paycheck....ugh

Seem to have less flares as long as I sleep during the day and up at night but there isn't much to do, hoping I can adjust my scheduling this December, hoping to spend the majority of that time on the coast.  At least I know more than likely Tonya and Randy will be up in the wee hours of the morning.   Tomorrow we have to go talk to the ding dongs at the apartment office about putting in our moving out notice because she apparently put in the computer our lease ends in March, I don't think so more like Jan.  Hopefully we will also get to go to the movies.