Iritis.org

Hi, Yall!

Saw the eye guy today. I am UVEITIS FREE!!!!!! Thank you, Humira!!

The light sensitivity, appearance of spots and floaters is due to severely dry eyes. My corneas are actually cracked. I received my first ever set of tear duct plugs today. I go back in three weeks for evaluation of that, and to schedule YAG treatment to blast open that subcapsular cataract I have in both eyes. Will they do both eyes at the same visit, or will they make me do one at a time??

My vision fields shrank significantly. But they won't get smaller. My vision is crappy, but my refusing to give up completely and fighting til I got the Humira saved what I had left. I should be pretty good. I meet my new Vocational Rehab counselor and my Blind Skills Trainer on the 7th. So I think Everything should be pretty good for awhile.

Keep Your Head Up,

Mary

Mary,
can you get your PCP to do an ACE test to see if Sarcoidosis might be related to all of this stuff and repeat tests for Systemic lupus Erythematosus? many of your related stuff can be attributed to SLE and Sarcoidosis (sarcoidosis occurs in about 16% of Pars planitis patients). hearing loss can occur with both. kidneys can be impacted, vascular disease can be present to include neovascularization of the retina. CME is common in them and so is Optic neuritis.
getting the cornea healed will improve vision. the YAG laser surgery will really help too. I had both eyes done and the improvement was immediate: one eye at a time however as it is still trauma to the eye which can result in renewed inflammation. a drop of durezol could be instilled prior to treatment to help limit this consequence as it is now used with Cataract surgery pre and post OP.
I have never heard of floaters being related to dry eyes however as the inflammation of the Lacrimal gland related to dry eyes isn't connnected to inflammation inside the eye resulting in floaters.
how did your optic nerve look? if you don't have inflammation, do you have elevated IOP to explain the fields loss?
was OCT scan or fluorescein angiography ordered to look for retinal inflammation and CME to explain this?

wish you the very best,
Mike

Mike-

Optic nerves looked good, there were some ERM's, tho very small. IOP was good. The floaters were old inflammatory cells, and there was an illusion of floaters and a small spot due the dry eye. Yeah, I know, leave it to me to be the weird one...

All new tests will be scheduled at the next visit. For now, I am concentrating on healing my corneas. Three weeks should help. Next time I see the doc, I will decide whether I want more permanent plugs in my tear ducts. I was dx'ed a couple years ago with Sjogren's, but they were not sure if it was primary or secondary. I was also told I have inflammatory arthritis of the spine. I looked that up, and it is AS. They are still using clinical symptoms and visual markers to determine my issues, as nothing shows up in my blood. Still. After six stinking years. I am beginning to believe I may never have an answer to what the root cause is. I DO know that I like Humira.

Last summer, I had an intense flare. My lymph nodes swelled to the point that my voice box was bruised! Boy, I was miserable. Tests were run, only a High White cell count was found. No viruses. That's when I finally got the Humira. After a short course of Prednisone pills. Shortly after that, I had a bad eye flare, and the spot appeared. As far as I can figure, probably the prednisone course raised my IOP temporarily. And I did not get Humira till August of 09, so I am figuring that's what took two degrees off my field. Went from 10 degrees visual field to 8 degrees.

the collagen punctal plugs only last a couple of days, then they 'melt'. I have punctal plugs implanted in my lower punta. they can also be implanted in the upper puncta if needed.
I use Refresh liquidgel eyedrops at night (my worst part of the day) to prevent my eyelids from sticking to my eyes. we don't blink in our sleep so what little tear film is available isn't spread across the eye to prevent them from sticking.
I can't tolerate preservatives in eyedrops anymore after 40 years of almost constant use so I buy the Refrsh plus eyedrops in single use vials for daytime use. this is critical to do in order for the cornea to heal to prevent infection.
the only way to determine if it is Sjogren's syndrome is to do the SSA (Ro 52) blood test and if positive, to do a lip biopsy.
if you have the genetics for Ankylosing spondylitis, that often causes keratoconjunctivitis SICCA (still dry eyes and dry mouth) but without SSA positivity. Restasis can help as a topical eyedrop to stop lacrimal gland inflammation but it burns like hell until the surface of the eye heals (restasis does this too) and can take up to six months to be fully effective. I think it can be purchased as a generic now. in the future the voclosporine based eyedrops will be available. Luveniq is in final approval before the FDA to treat uveitis with this molecule (very effective for intermediate and posterior uveitis) and may be approved late this year or early next year.
are you HLA B27 positive? how about IL23RN, ERAP1, IL1R2, and ANTXR2 as possible genes related to AS, Crohn's, psoriasis, breast cancer, Possibly. MS, SLE and Behcet's disease?
lupus (SLE) can share markers with sjogren's syndrome and has SSB and smith antibody (clotting factor). Cogans syndrome which has SEVERE deafness can be related to HLA B27 and can cause sclerouveitis.

wish you the best,
Mike

Mike-
I am HLA-B27 Neg. No other genetic testing has been done that I can remember. ALl I know for sure is what they told me in Dr.offices over the last six years. I am a little fuzzy on some details right now. I don't know if you ever smoked, but the Nicorette commercial is right- Quitting SUCKS!! My brains are fried today....

Mary

I still smoke my hospitalization back in december brought on the cravings again and I started up trying to cope with 'issues' in my life. I'm not happy with myself for doing it, and I wish you the best in getting over the cravings. the first week is the most difficult in my experience. keeping stress levels is so important if you can during your hard work getting over the cravings. if you can keep some carrot sticks and celery sticks around that you can 'pacify' yourself with, they help allot. keeping sugar cravings under control if possible helps too.

dealing with depression and anxiety and their underlying cause may make it possible to stop smoking again soon.
counseling is helping and the meds take the edge off but I don't want to use them forever. we finally got to some of my 'deamons' from the past in discussion today so if I work on getting them resolved, life will be much better. PTSD is a possible cause of my issues and I cannot discuss what they are because all are related to my time in the military and are still classified top secret. I can't even discuss everything fully with my VA doctor because the topics will always be classified and I could end up in Jail if I did discuss them. I can't even 'talk around' things.

Wish you the best,
Mike

Mike-

Many Vets have the same issues with not being able to talk about certain things they did when they served. AJ has the same issue. PTSD is a real bear. It is very hard when a person has to follow an order to do something they ordinarily would never do. Then to not be able to speak of such things and not be able to get the images out of your head makes a lot of your life very difficult, because no matter what happened, your life's experiences from that one pivotal point on are colored by that experience. Sometimes, it isn't a very nice color. You and others like you did your job. No more, no less. It was a job. It was not a pleasant experience, and you deserved much better treatment upon your return than you received. Unfortunately, not much was understood about PTSD at the time you were discharged or came home from the war, so nothing was done to help. All vets returning from war should have counseling for this. There was a time when these things were not spoken of. I believe that is what made the men of the WWII era so hard on our parents and us. Their lives were colored by these experiences, and thus they colored ours very similarly sometimes.

Traumatic life experiences of many kinds can bring on PTSD in many people. It is a painful issue to deal with. I am proud of you for dealing with it the best you can. I know it isn't easy, especially when you have to talk about your feelings to someone who has never had the same experience (s) in life. When I went for counseling years ago, I had to ask for a male, and please let him be a vet. The first couselor they stuck me with just sat there looking at me as if I were retarded as I answered her questions. She was younger than me, and had the air of a young woman who had never had to struggle for anything in her life. I couldn't deal with her. I was finally able to get a counselor I could relate to- to this day, I don't think I'd be here now without that guy. It was difficult to talk about some of my issues with a man at first, but I soon got over it. He was easier to talk to than that lady, and he understood where I was coming from.


I have begun day two of my life as a non-smoker. I am using Chantix, and it helps quite a bit. Once in a while I have to remind myself that I don't smoke anymore, but it's nowhere near the misery of going cold turkey. When I try to quit cold turkey, I get sick almost like a herion addict does when they need a fix. I won't need the drug forever, and it is non-nicotine, and does not cause seizures like Wellbutrin (Zyban) I love the stuff so far.


Keep your head up, Mikey.

(((((HUGS)))))

Mary

Good luck with the smoking cessasiion stuff and the the chantix worked for me in the past too taking the 'edge' off the cravings.

Jan went to Florida until Monday so I have to find something to do. will call my son to see if I can take them out to dinner on Easter and perhaps hide some chocolate eggs around the house (too wet right now to do a real easter egg hunt).
we are back into winter weather mode here in the Pacific Northwest probably until mid next week.

Take care,
Mike

Mikey,

That sucks! Too bad you can't spend Easter on the East Coast here- we are in the 80's! Will be all week. I certainly hope you can find a way to spend the holiday in a pleasant way, with friends or family. We will be thinking about you here, Mikey.


((((((((((((((((((HUGE HUGS)))))))))))))))

Mary

Mary,
I took my son and his kids for dinner tonight but we had to call it short because the little grand daughter started crying during dinner and seemed to be coming down with another ear infection, temperature present so we took her home and put her to bed. the mom and grandkids had been in San Diego to visit her sister and newborn 5th child and just returned Friday night. when I got to their house today, she wouldn't let her dad get dressed for dinner and she kept climbing down and then snuggling with me. back and forth. she was also playing with her brother so we just felt she missed her dad.
tomorrow I'll get take out for them if the grand daughter isn't well. Mommy has to work again tomorrow so daddy will be very tired and will need some help with the kids.

Hope your Easter is filled with lots of good food and family.

((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))
mike

Hi, Mike-

My Easter was good, managing to cook Easter Dinner with lots of help from AJ. Monday, I went to court over the beat down I got in September from my grown stepdaughter. Judge refused to look at all the evidence, disallowed my hearing issues, my lawyer did not do her job. We were both found guilty, forced to share court costs, pay a 50 dollar fine, got 90 days in jail suspended, and two years unsupervised probation. Appealing would mean driving to another county, as that county and mine share officials, or at least office drones. I'd get to appeal the decision, but would not necessarily get a new lawyer. I have a 50/50 chance of winning. Odds not good enough for me. After all the testimony given was in MY FAVOR- she even admitted to being the agressor, tho she lied her floozy tail off about a lot of what happened, I still have to pay 251 dollars by july. And I don't know what unsupervised probation will do for my chances of getting a job- DBVI assigned me a new Vocational Rehab counselor, who wants to help me find regular work, so I can write on the side, til my writing takes off. I did receive some more skills training, was told to use my white cane in the house to keep from knocking myself out or breaking anymore toes. Mobility trainerr will come out soon to help, also. Had a complete nuclear meltdown on Monday because the judge is a total moron, not to mention a big jerk.

On the upside, I cooked supper yesterday and today, without injury to anyone, and ate without looking like someone set off a toddler bomb at my place. Rehab teacher marked my appliances for me, thereby shaving much time off my laundry and cooking. ALso was taught how to clean and be sure I got it clean, and how NOT to knock over glasses at the table. Very cool.


So, except for worrying about what unsupervised probation will do for my chances of getting a job, I'm pretty OK.

Perhaps your granddaughter would benefit from tubes in her ears and allergy testing. Placing tubes, and then identifying Chris's allergies helped alot with that. Had someone tested me for allergies before I was 7, I might be able to hear now. Instead, they kept treating me for a cold.

So, kiss her for me, and tell her we all hope she gets better real soon.

((((HUGS))))

MAry

Mary,
what an eventful week! sorry you lost the case though and have the hassle of probation etc to have to deal with and then the court costs and attorney bills on your low income.................
some times it is easier to suck it up so to speak than to have to deal with the court system. way too much stress for what little gain for the individual. only the attorneys make out with their high fees etc.

my grandaughter is doing much better. but not completely well yet. I saw her yesterday afternoon and all she wanted to do was snuggle with her mommy as she had just gotten up from a nap.

the voc rehab sounds like things are finally moving forward for you with much needed information and training to deal with everyday life issues. Eating is a major problem for individuals with no vision or limited vision. I remember helping my dad.
FYI, My vision is ok and I still knock glasses over from time to time as my arms will 'jerk' when reaching. my legs will jerk too and kick over coffee tables etc. pretty embarassing.

wish you the best,
Mike

Mike-

My hands will twitch from time to time, thereby causing me to knock stuff over. My legs will, too, tho not near as often now that my seizures are under control. It IS embarrassing. I once jerked and threw a shoe across the room just as the nurse walked in. Poor girl came thisclose to getting knocked out. I wear sneakers to the doc's offices now. The worst is my sleep movement disorder. When I dream, whatever I am doing I will 'act out'. Poor Aj gets the brunt of that. I feel bad- sometimes I'm fighting, and he gets hurt! It $uck$!

YOu are right- in this case, it is worth 251 dollars to be rid of the negativity forever. It's OK. There is a lesson here, tho I haven't found it yet. ALso, I know from experience that the Universe will take care of it for me. No need for vengeance, no need to stew in the gutter with the trash. What the judge did, what the lawyers did, what she did, will all come back to them. One way or another, they will have to answer for what they did or did not do. I won't even have to be involved. And I won't be.

((((HUGS!)))))

Mary