[Kaeljia]

in reply to: Orbital Decompression DONE! #1071436

I had the surgery on both eyes back in January. The DR told me I could go back to work in 6 weeks and not to lift anything heavier than 10lbs. Okay. I was good too.. My operation took 3 hours, and I had to keep ice chilled pads on them for two days. I could not eat, I had to use a straw to drink, my mouth upper jaw was pretty much imobolized due to the freezing more like a paralysis. I still have partial paralysis on my upper outter lips. My teeth still feel weird and I still get the cold lines of freezing and hot feeling as well when I eat hot or cold food or drink. I had crusty eyes I was constantly and still have to keep clean. THese little pads under the eyes the size of a kidney bean but flatter got injured due to my rubbing my eyes when they go so itchy I couldnt stand it anymore. Eye drops, gel drops, nothing was helping. I had to keep warm and cold compresses on my eyes. I still am not driving cause my eyes are not focusing fast enough. So I guess I would have to say we are all different. I can tell you this, there seemed to be a huge feeling of freedom a release of pressure not only off my eyes, but my sinus’ my forhead and cheeks. Becareful when you wash your face, I still cannot feel my upper cheeks under neath my eyes well. I could literally pluck those fine hairs from my upper lip without tearing. So that can tell you how I lacked feeling. Becareful of biting your inner lips, they will feel swollen for a long time, mine still do, its only been recently that I’ve stopped chewing them when I eat food.
Otherwise you’ve got more information than I did. You may look bad, but may also notice a big difference in where your eyes sit in your face. I have finally noticed a big difference in the eye lids themselves. The bottom lids were tightened and the fat removed during the first operation, so my second one is only the uppre lids that need to be done now. That may be the reason for that little flap that keeps creeping up whenever my eyes are really bothering me. THE BEST THING FOR YOU AND YOUR EYES IS REST< I cannot stress this enough.. when you are tired your eyes will get worse. Try not to get angry as well cause this causes the fractures under your eyes to pinch, this is how I hurt those little pads the first time. Laughing, smiling, talking all will be different. I had aslight lisp before but its so definate now that its like listening to that women on that tv show CUPID. LOL. I kind of like it..but you can so hear the difference.
My eye did not get black and blue. I have pics I can show you of two days after the operation. Let me kknow I can show before and after.. I can show before TED, and during, then after..I guess I should do an update of what they look like today.
I hope this helps.
K

[Kaeljia]

in reply to: BLOODWORK when to do it. IMPORTANT #1071346

I found that since I know which arm is easier to give blood, I insist they use the same spot. I also use a hot pack on the spot prior to blood work. For operations its different since they use a different vein. BLood works comes from an entirely different area.
I agree with the excercise, just walking is good excercise what ever you can to get the blood flowing. Do not over exert yourself it could cause problems as well.

[Kaeljia]

in reply to: a word of caution before taking over the counter meds. #1071469

ooh that reminds me of the time I used a supposed natural lip balm. I immediatly had an allergic reaction my throat started to close up on me..I"d never experienced it before. The pharmacist I went to looked at me strange when I told him what had just happened.. I was lucky enough to be driving right by his store. He looked at the lip balm and was startled, he said it should have a warning on it..seems some of the ingrediants can cause similar effects when mixed as a cold medicine can. And if you read most medicines also say do not take if you have thyroid disease’ HMM maybe they should label food too… So yes becareful what you use, eat, drink, take. Oh I also without thought.. cause well sometimes its so hard to drink whats good for you. I had a Rockstar, I don’t drink much, if ever.. and I hardly drink coffee, and tea… I love hotchocolate and I love mochas. All of which are not good if you have GD. So I had a rockstar and an hour later the waitress drops another one down on my table.. what the heck.. I look around and some guys is raising his glass. Man you’d think the waitress would know not to serve two of those…. you would think I would’t drink it…. I guess because of having a thyroid condition it rocked my world harder than if I hadn’t..my crash came 42.5 hours after drinking those drinks. I was up the entire 42.5 hours straight.. my body was all doing the herkcy jercky and my heart was racing a mile aminute.
You must be so aware of everything you consume that it can be tiring. so be careful what you do take. Read all labels. Even food and lip balm. Oh and mascara can really irratate your eyes , well eye makeup in general can.

[Kaeljia]

in reply to: Stronger Immune System with RAI?? #1071520

HI all,
I can honestly say that since RAI, I haven’t felt sick…. hmm made me rethink that. I had a cold and have had normal stomach illlness’ oh forget it. It is different for everyone. Because we have GD Thyroid Disease we can’t take many products that any normal person would take. Cold meds, allergy meds, and some pain relief meds. I’ve seem to have a constant sniffle, because of the tearing eyes..so I"m never sure unless I’m sneezing if its allergens, or a cold, since I still get the heat thing once in awhile., I have to determine my temperature by my lips. IF they get dried and cracked I know I’ve had a fever. You know there should be a user manual given to each of us by the time we are in highschool I figure. LOL all this googling is giving me typers cramps. LOL
I know I didnt’ help, I’m sorry. Take it one day at a time…and feel free to come over to my back yard to rant, scream, start a bonfire and burn things in effigy.. it feels great to break something or burn something.
K ” title=”Wink” />

[Kaeljia]

in reply to: Orbital Decompression DONE! #1071431

RhondaG4 wrote:Hi,
Got a couple of questions for you. When did your TED start and how? I just had RAI done and my eyes are red and irrateded in the mornings…no swelling yet. I had an eye specialist look at my eyes as soon as I got my GD Dx, but have also been on steroids for my headaches..post stroke 2 years ago. I was just wondering if anyone knows if there is a temporary thing maybe going on post RAI or if this is something I should jump on right away, and even if I do is there anything they can do to minimize it? Also, the steroids they have me on are a gluco kind….should I ask them to switch me to prednisone? Anyone know? Thanks Rhonda

Rhonda,
you should be seeing an eye DR every 6 months, a specialist. NOt just an normal eye DR, I went to one because my specialist was out of town, and he told me I had no signs of Occular GD, or whatever its called. I was shocked he had the audacity to even suggest it to me.. meanwhile I"m sitting there with my eyes bugging out of my head like kermit, with my brows pushed up in that shocked expression. Oh really? HMMMM try again.
I was immediatly sent to another Dr, an Oculoplastics, Lacrimal and orbit surgeon. Now I direct all my questions to him.
K

ps, my operation was called a Bilateral orbital 3 wall decompression. gads what a mouth full… when the Anaesthesiaoligist came I had referred to him as my esthetician… lol the nurses were laughing.. oh they also placed an x inbetween my brows.. I asked if thats where they’re suppose to stop LOL.

[Kaeljia]

in reply to: Hi, am new here introducing myself #1071422

” title=”Very Happy” /> Hi Rhonda, thank you for such a warm welcome.
I can honestly say every procedure I went through; I took as a step in the right direction. When I had RAI I had no idea what to expect. This young nurse walks in with an apron. I tell her "oh you don’t need that, over few years back I had a hysterectomy." She giggles and says its okay, and hands it to me. I wait again a young male nurse walks in and tells me he’s here to do something else… its a small room what more can there be?
A few minutes of him adjusting dials and knobs he tests my thyroid with a meter, the thing beeps and bongs… JK and in walks the girl again. THe male nurse dons an apron himself. She is carrying just like homersimpson, a steel container about 3" high and 1.5" in diameter. oh she is carrying it with tongs and away from her body like it could jump up and bite her.
I look at her, she then pulls another vial that is made of steel but looks like a medicine bottle out of the larger heavier bottle.
I look at her with a strange mixture of what the heck is going on here..and whats next?
She then slips the smaller long bottle out and I assume she is going to pass the pill to me…. She says sorry you can’t touch it. OH Right Its radiated..duh what was I thinking… She then puts it into a smaller steel little version of a pill dispenser… and hands that to me, the young male nurse hands me a dixie cup of water.. It looks like a normal vitamin sized pill.
Go figure this has enough radiation in it to kill my thyroid?

SO I take the pill… no biggie… now I have to remember all the rules to taking RAI…. clean the toilet after yourself, disenfect the sink… I just didn’t even bother to cook for two to three weeks… figured it was safer that way… Never mind I kept my toothbrush in a seperate ziplock baggie and when the radiation was finished I destroyed it. I also made sure I didn’t let anyone else use my bathtowels or cloths. I washed all my own laundry..if I could I would have slept in a different bed… I did not kiss or hug or put my face/head near anyone for over a month just to be safe.. My son was jonesin for a mommy kiss goodnight.
So anyways I digress.. soo easy to do. After the pill they check the radiation level with which my body is absorbing it..depending on how bad the thyroid is, determines how much the body will absorb. My T4 was at 34 that day, so I figured it would be not bad… my thyroid absorbed 98.5% of all the radiation. The rest just passes in your urine.
Hence cleaning the toilet after yourself. It didn’t glow either so I guess I absorbed most of it. Although I was told if I used a blacklight on myself I’d see some glowing in the neck area.

So that is my experience with RAI, I had no side effects, I did’t feel different… I was put on Sythroid within a few days of being Radiated, and it was a mild dose and then uped after a month or so. I am still at that level now, I did feel days where I considered it crashing but I never experienced that total crash hit the bottom of the barrel. The synthroid helped with that.
I did feel sluggish and moody, but thats the norm. My eyes were a different story… the entire time I was diagnosed with Graves Disease they had showed no more than my usual slight bulge. Almost two weeks after getting RAI, I noticed an increase of tension in my eyes, and it was down hill from there.. My eyes were being pushed up into my brows and misshaped like an egg… hence my orbital decompression on both.

I guess taking everything as another step to getting back to a normal me, was how I delt with each circumstance, the meds, the RAI the operation. It was the only way I could deal with it sainly, I think it helped my family more than myself cause I tried hard to not complain. Thats hard. But it would never get me anywhere so why bother.

All I can suggest is that it will be different, better ? remains to be seen, different ? Yes.
For almost a year I hated looking at myself in the mirror I did not recognise me, my eyes were so misshapen I hated it, no makeup which wasn’t bad I can do that… but the mad mad look that always looked like a crazy women looking back at me, I have no idea how people could look at me and not think I was going stark raving mad in looks atleast cause thats what it looked like. I wanted to take a picture of how I looked before GD to my Dr so he could make me look like that again….. but the photo was rather large…lol and well I figured he didn’t need the pressure.
Oh well,
Have a great day , take it onestep at atime… and I hope I can help someone the same way I hope someone can help me.
I’m here if you need to talk.
K thats what I looked like all last year, a constant state of angry shock. LOL

[Kaeljia]

in reply to: Will it end? #1071593

Hi Emily, hmmm end.. it’ll just be different something you’ll have to get use to.
I know when I was first diagnosed with GD, and given Methimazol felt like myself within six months I ran I did everything, and before that I had trouble walking up three steps or carrying anything. I had no energy, I hurt all over, and yet I looked like there was nothing wrong with me.
It wasn’t all glory, I still felt like crap 85% of the time. Then it went into remission, can that happen. My Dr said I was not the norm with GD I didn’t lose weight, but my weight was stable but I was overweight. Then I almost broke up with my bf, and within a month I lost all excess weight and was down to my normal weight again… the stress triggered weight loss. Wish it had stayed off cause within six months it was all back on again.
WIthin a year GD was in hypermode once again…
After three years I was radiated, I had had enough. I am on 75mc synthroid now… My DR told me the radiation killed my thyroid,he couldn’t feel it, but I still felt hyperthyroid symptoms. I even had slight but not bad shaking. I knew cause my voice was different, I felt tired after talking only for a few minutes like I was out of breath. My T level was in six weeks up from 13 to 20 now I understand it will fluctuate, but thats getting up there. I also know now that it takes the medicine a while to normalize your system..but still I don’t feel normal.This time being HYPO I"ve gained more weight, my eyes are were diagnosed with GD a week after I had taken the radiated iodine, it was like a bell went off in my body and my eyes were saying what about us… we get left out? not on your life lets get the party started… Even now I still get the feeling of overheating, that going to combust in my sleep.. I am also prone to insomnia; waking up at the precise time of 330am almost every morning. Like clockwork, now I’m wondering if its caused my inner clock some twisted sense of time. I will layawake there for hours… so tired I cry, but unable to sleep. How the heck am I suppose to work when all I want to do is sleep till ten am after that? Grouchy, miserable, crying emotional, angry, un predictable, irrational… anyone have any more that I’ve forgotten…see forgetfullness.. can’t remember words…. call things the wrong thing..or is that something else?
Normal is not what I’ll ever be again… I don’t think. So I have to learn how to work around what I am. Make the most of it….
I dont like it one bit. Conquer it? I would love to.
I know this didn’t help, but maybe it helps knowing others out there are also feeling the same way.
K

[Kaeljia]

in reply to: EYE ISSUE, OSTEOPENIA, FALLING HAIR and DIET QUERIES #1071418

If I knew then what I know now… I too stayed off of seafood, salt, iodized salt especially, I use to use sea salt exclusivley. All processed foods, alcohol and caffienated products. Sheesh what does that leave, a miserable person.
I don’t mind most of it, I hated giving up chocolate so I would eat only a taste. especially dark chocolate. I am my own worst enemy when it comes to keeping my diet clean. What I have done is make sure my meds are the same time everyday…no matter what. no deviation and do not DONOT forget. I forgot once and got pregnant LOL.
I can say I never paid attention to whether or not it affected my eyes..never dawned on me till you suggested it. I knew years ago I hated what alcohol did to my eyes, it was like I was allergic to it, so never really took up drinking. I don’t smoke either… My Dr asked me if I smoked when I saw him before my Orb.Decomp. I have noticed not drinking enough fluids though makes me one sore unhappy camper, my head hurts, along with my eyes, my hair.. oh lets not mention hair loss… I always always had long long hair down past my bum, and never never lost as much hair then as I have in the last few years Since being Diagnosed with GD. Even after being radiated, my hairloss is excessive, I can pull rats out of the drain.But I am not bald. Dry scalp dry skin, itchy skin… The eyes, thats another story,I had perfecat vision, I was seeing an eye specialist for two years before GD took over my eyes, and I passed all the test, peripheral vision was great. Now ….well thats another story. I don’t have an answer for the eyes either I await all responses you’ll get with bated breath.
K

[Kaeljia]

in reply to: genetic? Could i be… #1071426

There was one on both sides of my family trees ~ one with Graves’, one with rheumatoid arthritis.

I’m interested in this..simply beacause at the age of 13 I was diagnosed with Rheumatiod Arthritis, and a few years later a DR told my Mom I never ever had it. I was in the hospital for a month with swollen joints raging feavers and then freezing cold.. I use to get this internal heat that made me feel as if I would combust. Now I know thats part of Graves Disease. I had been feeling that way all through my teens. Have I passed this on to my kids, my daughter has a high motabolism, and is very skinny, she is in the 33%tile for her age group in weight and 90% for height. My son is heavy and in the 100%tile for his age group on weight and height. I have had my daughter tested for thyroid disease, and none were found. I know that one test does not mean it does not exist. It took them almost 6 months to diagnose me before they caught it. I don’t mean to take away from Ski’s story, but do feel they may both be in relation to each other.

[Author]

Posts