View Full Version : Rob..
05-09-2008, 09:58 AM
Hot radiologist, treatment....Dad, family...how is everything...Do tell.
I prayed for you. I asked for love and health for you.
Oluwa! I can't tell you how good it is to hear from you, and everyone else! I missed you guys in a big way. I mentioned on another post that there are other Lupus sites I visited while WHL was down. They feel cold and impersonal to me. Nice places with lots of info, but no real "connection " if you know what I mean. I read about your brother visiting. Sounds like you guys had fun. It also seems that IT has given you a small break. It's good to hear happiness in your voice. As for me, well, I don't know any more. I'm feeling terrible. I finished the IV steriod with the oral steroid follow up, and it doesn't seem to have done anything. So, I'll probably have to have the larger dose longer duration steroid. Not looking forward to that. I managed to lose all the weight from the steroids I was on back when I first got the SLE diagnosis, and I've been in the normal height/weight range for awhile now. It was a bear to get the weight off though. But, it's better than the alternative. My parents went out to Nevada for the yearly "Border Rats" get together. It's an association for retired federal law enforcement. Dad got to see some old friends and they had a great time. The hot radiologist is still there, and still has a boyfriend. Grrr. That's OK, I'm not up for any wine women or song right now anyway. I get down alot. I have a really tough time sleeping. My Dr gave me a small prescription of sedative to help me sleep. It does it's job, but I'm very cautious with that sort of med. I have my TMJ problem again, and it's making life a little more miserable. To top it all off, I had a molar break off completely. Ever since the SLE dx, my teeth have become brittle. I brush/floss religiously 3 times a day, but I still have the problem. I've just been frustrated lately. I have plans for things to do this summer, I hope I can be well enough to get out and do some of them. How are things with you? Tolerable I hope. It's great to be back on here, I was missing everyone.
05-09-2008, 10:49 AM
I am so happy to see you. Broken molar and all. Hugs..
TMJ, lack of sleep...down...come let me give you a tight, tight hug...
I pray the larger dose will be the treatment for you and your mid-tire stays in the trunk.
Is your mouth dry? Sjogren's maybe? Artifical Saliva spray? There is such of a thing as too clean of a mouth. Too strong of mouth wash can be the culprit, too clean too..we do need a bit of bacteria in the gub.
Maybe just floss after each meal and brush two times a day. My husband has braces and he was cleaning way to much. Using toothpaste at the rate a kid would use ketcup. And he, well, had ca-ca breath, from being too clean. Stopped the strong mouthwash and now no more ca-ca. he had tro confirm it with the dentist before taking my advice though...after his tightening he said..ah, you were right...
Cavity prevention..maybe the dentist can put a layer of liquid enamel over them. I use it at my gum line...and rinse with fluoride. Also it maybe a good idea to fill in the crevaces with a resin in your molars that don't have a filling to prevent surface cavaties...
I have been having good nights sleep. Who knew progesterone, Prometrium could do that. Out before Jay Leno starts. Sleepless nights magnify the down feelings...and sometimes the medicine they use to treat it with...what one you dosing with?
Here is my email...deleted... In the event we go poof again, or even if it doesn't. You can write me anytime, Rob. We are in the same time warp. EST.
Hugs...be well I will ask of Him.
My sleep meds are the generic valium. They do an ok job. Mouthwash, I don't know the brand name of it, but I'm using fairly mild stuff. Regular mouthwash is like a mouth full of fire. The Dr. hasn't discussed Sjogrens with me, but it a possibility. Your hubby has braces, I feel for him. I had the whole 9 yards top, bottom and headgear. 4 years of pain, but I'm glad I had it done. I was shocked when I saw an entire tooth, one of the big ones in the back, fall out onto my dinner plate. I'm just glad I didn't bite down on it and break another tooth in the process. I've had plenty of cracks/chips but never an entire tooth intact. I was eating dinner over at my sisters house and she heard the crack noise in the kitchen. She thought it came from her husband who just had knee surgery and won't stay off his feet/crutches. Gotta have a whole new tooth implanted. I think I'm going to have sedation done so they can fix all the other things at once. It hurt like heck when it came out, but the pain has pretty much gone away. Not much fun.
Oh yeah, here's my E-mail.
05-09-2008, 12:24 PM
Ouch...maybe a bridge will work instead of an implant...
I grew up in the country, well water, not fluorinated...so my teeth are full of fillings or caps. The fillings give since some of them are from when I was 12 and then so does a chunk of my tooth, one of the peaks..
I get my bucks cleaned next week. Planning to have a few caps replace, crowned Queen for the Day... and maybe a new one installed on one that looks like the filing is going to give.
I know a few others here mention teeth breaking, maybe do a search, maybe they found the cause..
I have Sjogren's, but no new cavities or abnormalities. A squirt of lube at night before sleep and when I gab on the phone...and sip water often.
My husband is doing well with his braces. First two weeks, I cooked soft food, chopped in smaller then bite size... now he eats almost anything. No head gear though..top are plastic and metal, bottoms all metal. He has had them for oh, about 7 months, only 17 more to go...
Do you have dry eyes? Red eyes? Feel gritty..that is a symptom of Sjogren's too...
Valium, maybe keeping you down in spirits during the day. I maybe mistaken but I think Valium stays a bit long in the liver after dosing, keeping the effects of it in the body longer...
I will add ya to my list, thank you Rob.
05-09-2008, 06:41 PM
I am sorry to hear you are not doing well on the treatment. Is there another alternative?
I had to chime in because my enamel started coming off, etc. Primary ran an Anti-SSA and Anti-SSB blood labs and BINGO, Sjogrens. I now see the dentist every 4 months which they put some type of coating on my teeth.
I was told to brush with, ironically, Tom's of Maine Natural Whole Care anticavity and tartar control gel with flouide toothpaste after breakfast and lunch and rinse with ACT or Biotene. Before bed, I was prescirbed SF 5000 PLUS .1% sodium fluoride and to not drink any water as it prevents teeth from cracking and saves the enamel. I was told by the dentist that with Sjogren's the teeth will break more easily.
I am praying for you and hoping you get better very soon.
05-09-2008, 07:01 PM
Awww, Rob, I'm sorry the treatment didn't do the trick. I know you were hoping no more high-dose steroids. But, the puffer-fish cheeks are a small price to pay for some relief, right?
About the teeth...YIKES...and OUCH! I have Sjogren's, and I also think you might want to ask about that as a possible culprit. Regular toothpaste can be a real problem if you have dry mouth. Biotene, Oasis...there are others. Sjogren's Foundation website has lots of good info...might be some answers there.
05-10-2008, 01:40 AM
Are you taking calcium suppliments? If not you probably should be. Some of the meds we take suck the calium out of our bones and teeth. Check with your doc next time you're talking to him.
Jody, you need your pic back! Just add it back on to your profile and HUGSSSSS good to see you again. Missed you all so much.
I started reading up on Sjogrens last night. I do have terrible dry/gritty eyes, every day without fail. I grew up in the country too Oluwa, and grew up with well water. Biotene, that's the name of the mouthwash I use. I have an appt with an oral surgeon in two weeks to talk about options for fixing the molar, and various chips and cracks. SITC, as far as calcium goes, that's one thing I'm not lacking. I have unusually dense bones, and I have been drinking a gallon of skim milk every couple of days since I was a kid. When I was in the Army, I was always about 15 pounds over the weight limit for my height/age, but measurment size and body fat index was always right where it should be. Had a bone scan done after a bout with shin splints, and voila, found out I have unusually dense bone structure. Some people would say the really dense part is above my shoulders! I see my regular Dr. next week, and we'll be talking about Sjogrens. It's been frustrating lately. I've been getting out alot more these days, and meeting people. This has led to some really interesting opportunities if I choose to take them. Unfortunately, I know that some of these opportunities are beyond my abilities from a health standpoint. I need to figure out what I can, and cannot do. Back when I was healthy, I would dive into things head first with no hesitation. Now, you all know that we have to be realistic, and know our limits. Anyway, when I hit the shortcut on my desktop yesterday and got WHL instead of the error message, it gave me a much needed morale boost. To come here this morning, and see all of you here, is another huge morale boost as well. I never considered the internet a place where I would meet real friends, and people who I would care about. I found myself thinking about all of you while the site was down, wondering how you all were doing, hoping IT wasn't getting the best of you. This website is much more than just words on a screen. It's so good to be back, and visit with you guys. Thanks for all the advice as well, Tom's of Maine, Sjogrens, I'll be looking into all of it.
05-10-2008, 06:27 AM
Hang in there Rob....you are a fighter, and this thing's got NOTHIN' on you! As for the teeth, consider this your chance, courtesy of IT, to receive a "Brand new, sparklingly beautiful, pearly white tooth. Come on down!"
Do I understand your pain? Truly, I do. I've had no enamel on my teeth since I was about 5 years old...cavities, cracks, tetracycline damage, you name it. Finally, at the ripe old age of 40, I had to have most of them replaced. Looked like a vampire before they were capped or crowned. But now...."Glow in the dark white" and proud of it.
Ok, I took that too far. Anyway, try not to get depressed about this latest expression of IT...you have a beautiful new tooth coming your way. Which reminds me...now the tooth fairy owes you BIG time. (You are never too old for that, you know....)
Best wishes, Jana
05-10-2008, 08:04 AM
Only problem with the tooth fair at our age, is she's got a sick sense of humor. She leaves dentures under our pillow's instead of money hahahaha.
Course Rob, you know you got us courious now about those "opportunities". I'm not afraid to admint I'm nosey...so spill it!
05-10-2008, 10:33 AM
Rob, I am on the exact regimine as Faith. The Tom's I use is the mango flavored, and it helps so much with that feeling of ickiness in your mouth. It is not a cheap toothpaste, but occasionally the drug store will have a sale on it, and we stock up then.
Gosh, I am so glad to read all of your posts. I feel as if I have been lost at sea for a while.... I am back in home port, and I love hearing what all of you are doing.
I am joining in the hug...
05-10-2008, 11:33 AM
It is nice being home again. Really sunk it in how much this board and all the wonderful people on it mean to me. :)
05-11-2008, 10:19 PM
Good to have you back. How are you doing? I read your post about Tom's of Maine. Is it great or what? I totally love it and I have noticed a difference.
05-12-2008, 02:58 PM
Hi, SITC - glad to see you all again, too. I may not say something all the time, but I really look forward to reading what you all say. It is just a special part of my day! Even when the postings are not upbeat, they help me not to feel so alone (although I can nearly always get a good laugh from SITC, Oluwa, and/or Rob. And this time, add Teron to that list. Love the cats!!!)
Hey, Faith. Looooove the Tom's. I recommended it to a friend who had to have radiation to her face (eye tumors), and she had that horrible, gummy, icky taste in her mouth all the time. She really thinks it makes a difference for her, too. Plus, it was mild enough not to bother the raw, burned areas in her mouth (I figured it would, since it doesn't bother my deep, deep mouth sores too much).
You doing okay?
05-12-2008, 09:16 PM
hi rob, sorry you are having a rough go of it. Sometimes this thing can get to ya cant it? I wonder if i am the only one who ever dreams that i am healthy again.
I have in the past used the Toms toothpaste. I really liked it.
I have really missed coming to WHL also. I am fairly new and have trouble with typing...my hands just dont work all that well at times but I like to believe that I am making some friends here.
I had something really profound or maybe it was witty to say but I seem to have forgotten. really tired all of a sudden...i think im gonna go to bed.
I get those fleeting thoughts all the time. One second I have a really good thought, idea, or pertinent thing to say. And then poof, It's gone. The connection between my brain and my fingers is not what it used to be either, so believe me, I understand what you mean. Your words and meaning come across just fine to me though! This thing certainly can get to you. Some days I feel on top of the lupus, and other days it's on top of me, holding me down and kicking my butt. Hang in there Kasey, we all have good days ahead of us still. Survive the bad days, and savor every moment of the good ones.
Pretti in Pink
05-13-2008, 04:51 PM
You are a fighter and will get thru this just as the many of hurdles that you have overcome. I'm glad the forum is back up as well and I too wondered about everyone and was fearful that we had lost touch forever. It does lend a wealth of support, great friends, and much needed laughs.
Tooth problems- I have noticed that my teeth are very sensitive to hot and cold things, like to the point that if the wind blows it will make my teeth hurt. I can't even suck my teeth or blow out of my mouth too hard because it is a numming pain. I attribute it to all of the steroids I have been on. I am also pass due on my yearly check up but when I go I will see what he has to offer.
Thanks pretty in pink. Somedays I fight, and some days I surrender.
05-19-2008, 07:20 PM
This may sound like I am out in the corn. But I try to stay in my pain when I can't get rid of it without swallowing a handful of opiates.
I close my eyes and focus on the spot, like my back, feel all the pain and it seems to fade it out for that moment. Like it gets cold...Visualizing each vertebra, each muscle, each patch of flesh. Like how you visualize when receiving a massage...deep, deep, into the tissue...breathing deep and slowly.
Okay, I'm a weird one...