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.

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.