I want to give you my support also, I have not experienced the exact same issues you are, but I have been through the never ending, sinking, frustrating , scary, times, relating to what seems a long laundry list of never ending health issues. You are very brave the way you handle yourself, not giving up and trying to do all you can to get much needed relief.
I could not imagine the eye problems. I have read others listing the problems that come with dry eyes and I can say it sounds really bad. I am sorry you are in such a flair.
I believe there will be relief coming your way...don't give up hope...don't give up doing all you are doing...don't give up posting...people are here to help you through this. I wish I had some perfect answer for you. Just want to let you know I read your postings and I hear you and feel compassion for you.
Take Care,
Lisa
Aslo wanted to ask...have you ever tried Baclofen for spacticity? It is an old drug, very effective. I go on it when I have a ms flair.
edited:SP
#1inflamedOnline2010-02-04 19:25:31I have been on that drug. Right now I take Amrix and Nerurontin. The Amrix is supposedly a new med. It has a crazy copay. Mine was . It seems this is cheap compared to what other people pay. It does seem to help a bit. It's hard to tell what med is really making the difference. Rebecca, I am sooo sorry to hear your horrible situation is still going on. At your age, you should be doing actively fun things with your family and friends. It's not fair!
I've had bad TMJ dislocations 3 times but at least my eyes could tear and believe me they did. I don't have RA there, who knows why it's happened... well actually, the last time was due to that devise a dentist put in my mouth to hold it open since I can't. My small mouth just couldn't take it. That time lasted 10days then poof, I woke up one day and it had slipped back into place so I called and cancelled all the treatments I was about to start. I can only imagine if that kind of pain was ongoing like you are suffering. My prayers are with you.
I totally agree that you are a perfect example of one type of RA patient to come here... you need to have a safe place to vent, where you can be willingly really listened to. Another type, of course, is someone who is new to RA, scared, and eager to understand it all. We are here because we want to be supportive and be supported.... that's what you're doing and you don't need to feel bad about that.... you've got enough to feel bad about.
Personally, I've had to let go about feeling bad that I can't come here and participate as much as I did last year. I have so much going on that with only limited and unpredictable hours of doing anything each day, something had to give so I've decreased my computer time. I confess I'm on 3 forums, this one, one for IBS(badly disabling me 2-4days/wk on top of RA), one for quilting. I seem to be checking in with all 3 in waves of several days, then off for weeks. I must say, having those off-weeks has provided time to slowly pack up and downsize possessions before bankruptcy gets to some point where bank kicks us out. I only have 2-3hrs of functioning and maybe another one after my long rest period each day. I vary each activity to avoid sitting etc too long, whether it got done or not. This weekend I must accomplish banking & bills besides dressing, eating, petcare, very basic cleaning. So, I'll check back here this eve, then my weeks-off will begin again... although I do "cheat" with a quick reading-only, no log in, about every 7-10days.
Anyway.... please don't feel bad about telling us everything!
CathyMarie
Well, here's hoping to get some sort of answers tomorrow. I have my consult at MCV(Medical College of Va) tomorrow. It's about a 3hr. drive, so that won't be fun. I am not quite sure what I want to hear...just that something has got to change.
[QUOTE=leila]Whew. I broke a sweat just reading that! Hang in there rebecca, I'm praying for you daily. [/QUOTE]
Man...so did I!
Hope it becomes increasingly easier on you. Will watch for the updates.
Best Wishes,
Lisa
I have been on neurotin also...it was for nerve pain. I personally did not like it. It made me feel like I had pressure in my head. Good luck on your consult Rebecca.
[QUOTE=rocckyd]I have been on that drug. Right now I take Amrix and Nerurontin. The Amrix is supposedly a new med. It has a crazy copay. Mine was . It seems this is cheap compared to what other people pay. It does seem to help a bit. It's hard to tell what med is really making the difference. [/QUOTE]
Amrix is nothing more than an extended-release version of Flexeril (generic = cyclobenzaprine). Retail price for a month of Amrix is around 0; retail price of equivalent amount of generic cyclobenzaprine = . If you can remember to take pills two or three times per day, you might want to talk to your doc about switching to plain old generic cyclobenzaprine.
I asked about taking the Flexeril more often, but I was told that it wouldn't be the same. I switched back to the Soma this month.
I was very surprised at the copay. My insurance is actually pretty good.
OK...off to bed...hitting the road tomorrow! Road Trip!
[QUOTE=rocckyd]I asked about taking the Flexeril more often, but I was told that it wouldn't be the same. I switched back to the Soma this month.
I hope you find some answers tomorrow. Prayers for some changes for the better.Just wanted to send big hugs your way Rebecca
I'll be keeping you in my thoughts, Rebecca..I hope this is a good appointment and you get some good responses.......and relief!!
So…long appointment! First off, I really like the surgeon. I was uncomfortable switching from Dr. K. You know how it is when you get a relationship with a dr. who you trust. So, I am glad that I at least like the guy.
This will be a long process, to say the least. I had no idea…
Dr. feels that I need that bilateral joint replacement. Basically, I can stay as I am now and do nothing, or do the surgery. Not much else to be done. But, it gets complicated. It is a two part surgery. The joints are custom made. In order for this to be done, you have surgery first where they remove part of the jaw on each side. Various measurements are then collected. The removed part is then replaced with silicone to provide support. The next day, they take 3D scans to complete the measurements. These measurements are then sent off and it takes about 8 weeks to have the joints made. Now…here is the fun part. During these 8 weeks I am to be on a full liquid diet…great! When the artificial joints are set, back to the hospital I will go…once that surgery is completed, it’s 8-12 weeks rehab.
If it can get timed out right…I can have the first surgery done during spring break. Then, the second surgery would be done the first week out of school. That would get me back to work for the start of the school year.
It’s just a lot to think about….So…I’m going to bed!
Wow! I can't blame you for going to bed. I feel like going to bed and I don't even have to go through it!
I wish you all the best and prayers going up to help you come to a decision.
Sounds like a long day! Rest well. I hope that all works out for you what ever you decide. Scheduallying the time sounds like a dreadful amount of thinking. I often think that the most stressful part of surgery is the amount of down time needed for recovery.
Your title for this thread pretty well sums it all up. I ditto that. Argh! I can not imagine your frustrations.
Well on going prayers for you my dear. Wishing you happy ever afters.
That is a lot to think about! I am glad you like the surgeon, that goes a long way toward your decision, I'm sure. You have been through so much, that I hate to think about you going through any thing more. If it helps, use us as your sounding board and what ever you decide, we will be here for your support.
The Dr. was very clear that everybody needed to be on board. So, he said he would talk to the rheumy, pain dr. PT, and Dr. K today and tomorrow. It's just such a bigger surgery than I had expected.
Plus... I had to laugh. He was explaining two different types of implants and showing me the one he wants to use. He said "I've done 17 of these, and only 3 of these"...huh...17??? He said that's quite a bit in the implant world.
The other issue that needs to be understood is that the surgery is purely for function. He said that the pain may or may not go away. So, now I have pain and no function-not good. Here's hoping for less pain and function.
Rebecca,
This is big. I will pray for wisdom for you.
I'll be keeping you in my thoughts and prayers. Talked to Dr. Z today (Richmond dr.). He actually called me on his cell and we talked for about 30min. I asked him about going back to work after stage 1 of the surgery. He said about half his patients do, and half don't. Hmmm...he has done 17 of these type of replacements-so 8 1/2 either way huh
Wow. Rebecca, just wow. I hope this surgery does help, but I feel for you having to plan all your procedures around vacations! There has got to be something the school can do to help you. I admire your strength through all this and I hope this surgery both improves function and eases your pain. You definitely deserve the relief!! Continued prayers.So..went by our central office yesterday to talk about time off and options...really depressing conversation.
The county does not offer any sort of short term disability---none. Seriously???? I am allowed 12 weeks of FMLA a year. I've already used 4 weeks. After the 12 weeks, I have to pay the premiums of health/dental insurance. Can't really afford that... I did ask what would happen if I ended up having to take disability. I've been teaching for 11yrs so I can pull from the Virginia Retirement System. The lady in charge is going to pull some numbers and email me on Monday with $$$ amounts. This is not something I want to do. But, the RA is in an awful awful flare. Forget the jaw...everything else feels awful as well. I was worked in on Friday to see the PA at my pain dr. She was surprised at the amount of inflammation and she can't do injections so they worked me in Monday afternoon to see the dr. Jaw...well, it feels awful but no surprise there. The surgeon scheduler chick is supposed to call on Monday with the date of stage 1. According to the dr. 1/2 his patients are able to go back to work till stage 2. It's not fun, but might be able to be done. Obviously, I need to try to get back to work. I can't afford the go past the 12 weeks off in a year.
Question, if it get disability from the retirement system, is this in addition to what you draw from Social Security?
Rebecca, I really don't know so I won't comment on your question. I am not surprised that you are in a flare with all you are stressed about. I am so sorry you have to worry about all this on top of what you are already worrying about. You are in my thoughts constantly, you and Nate. Waddie
I do not know what your state laws are. In Illinios if you are a teacher you can only draw on your teachers retirement and I have no idea if that goes for disability also? My aunt is a teacher her husband a chiropractor now retired. he is very ill. So because she is a teacher in Ill she can not get social security or even draw widows pention if her husband should die. She worked three jobs to put him through school does not matter.
I know California has different laws not sure what your state has? It would seem that social security is a fedaral thing but I guess for teachers it is dependent on your state.
Teachers in Illinois don't pay into social security - the teacher retirement system (their pension) takes its place.
They don't pay in at all? I am assuming I do-it looks like it on my paycheck.
Sorry if I am sounding stupid about all this...
If I look at my stub I see...SFICA FEDWH MIFCA STATE
Of course these are in addition to medical/dental and union dues.... I assumed SFICA was social security of some sort.....
That is true but from what I understand other jobs that teachers have had that they did pay social security on does not count because they are teachers. Some people work more than one job.
[QUOTE=milly]That is true but from what I understand other jobs that teachers have had that they did pay social security on does not count because they are teachers. Some people work more than one job.[/QUOTE]
I know things get hairy when you start adding in more than one career - leave it to Springfield to find a way to screw things up.
I guess if you pay in then you are entitiled to the social security disability. That must be how it works.[QUOTE=rocckyd]So..went by our central office yesterday to talk about time off and options...really depressing conversation.
The county does not offer any sort of short term disability---none. Seriously???? I am allowed 12 weeks of FMLA a year. I've already used 4 weeks. After the 12 weeks, I have to pay the premiums of health/dental insurance. Can't really afford that... I did ask what would happen if I ended up having to take disability. I've been teaching for 11yrs so I can pull from the Virginia Retirement System. The lady in charge is going to pull some numbers and email me on Monday with $$$ amounts. This is not something I want to do. But, the RA is in an awful awful flare. Forget the jaw...everything else feels awful as well. I was worked in on Friday to see the PA at my pain dr. She was surprised at the amount of inflammation and she can't do injections so they worked me in Monday afternoon to see the dr. Jaw...well, it feels awful but no surprise there. The surgeon scheduler chick is supposed to call on Monday with the date of stage 1. According to the dr. 1/2 his patients are able to go back to work till stage 2. It's not fun, but might be able to be done. Obviously, I need to try to get back to work. I can't afford the go past the 12 weeks off in a year.
Question, if it get disability from the retirement system, is this in addition to what you draw from Social Security?
[/QUOTE]
Wishing you the best Rebecca, you are in a tough situation. I hope that you at least get the inflammation under control soon. I do not know what the laws are. My daughter is a teacher but she is a "new teacher" I asked her when she receives Tenure and she looked at me with a wrinkled nose...Take care,
Lisa
I remember waiting for tenure... This year, all teachers without tenure are being pink slipped. Scary times....
Thanks guys for your support. I never ever thought that I would be 33 and even looking into all this. Hopefully the HR lady will email me tomorrow with more info. I felt really stupid sitting in her office with all my questions. I with there was a required class in college where you have to learn about health insurance, taxes, Retirement plans, Social Security, and so on....
[QUOTE=rocckyd]I remember waiting for tenure... This year, all teachers without tenure are being pink slipped. Scary times....
Date for "stage 1" is set for March 30th. Wow...that seems soon.... I am very glad that the surgeon was able to rearrange his schedule to fit me in. Spring Break starts on Good Friday. I will need to take off the 29th for the drive and the pre-surg appt. so that will be 4 days off that week. Then I will have the week of Spring Break to recover. The dr. is pretty confident that I will be able to return to work on April 12th. I am pretty good at just pushing through, so if it is just a pain issue I can probably do it. He said that I won't be causing any more damage to the joint if I work, so he is leaving it up to me. I only have 8 more weeks of FMLA available to me, so I'm gonna try! Plus, contracts are due out in May. Gotta be employed if I even need to consider disability in the future. Kinda helps :)
I am so embarassed that this thread has gotten so long! You guys have been such a wealth of support through all this. I know that I probably seem incredibly stubborn at times-especially when it comes to wanting to teach. I posted this on another site, but I think it explains why the whole job/money issue is even compounded by other stuff:
Honestly, things are too hot right now. My ex-husband switched jobs last OCT. Child support is garnished from his paycheck(he's a winner). I have not received any support since Dec. I really wish I could just say forget it-but a teacher's salary isn't great. I have a case with child support enforcement(CSE) so I'll get the income. It's just a matter of them serving the papers to his new employer. Then it takes about a month for the garnishment to be in place. Even though I know where he works, CSE has steps that they need to take. They served the old employer in Jan(duh). After 30days they then served another employer(month of Feb). I am assuming they served the correct one. Privacy laws prohibit them from telling me who they served. Well, as of tommorrow it will have been another 30days. So, I guess I'll be on the phone with them. Not a quick process, but a free one. My lawyer told me that this would be the best way to handle it. I can just go online and view my case, see how high is back pay is, and see when payments are made. Most likely I will receive his income tax return next year to make up the back pay. That is what happened last time this occured. Of course-he has also disappeared leaving me to answer a zillion questions from Nathan. I have never once talked bad about his dad to him, but he is making his own conclusions. I think the only blessing here is that he has never known it any different. He walked out when I was 14 weeks pregnant. I think that has also been good for me regarding the RA. I have always had RA as a single mom. So, it's not like I had to make a major lifestyle change.
So, add no support to the fact that I just took a month off without pay and you can see how things are too great. Luckily, Nathan's activities were paid for in Jan. He isn't really being affected. This is the last week of swimming-YMCA Champs is next weekend. Soccer starts on Wed, and I paid for his week long soccer camp in June.
So...in a nutshell...I am grasping at straws right now to make everything work. Awful flare-I swear, new joints have popped up where I never knew there were joints! Pain management dr. fit me in today and gave me 4 steriod injections in the sternum area. It's all red and inflammed. Other joints look pretty bad too...He was surprised as I had just had my monthly appt. with him 2 weeks ago. Crazy how RA just pounces huh? I see him again on the 11th. Can't do any real med changes until May due to the length of time the Rituxan is in my system. He is really concerned about the fact that my rt. thumb appears to be "turning out" a bit. It is also obviously swollen. As strange as it is, my hands have always been spared. Not normal, but true. It's almost as though a switch was flipped in Dec., and the RA has just been going nonstop.
So...this was a rambling post...
I didn't hear back from central office today. Honestly, with it being my first day back at work, I didn't even remember until this evening. I'll email her tomorrow.
Jas...good idea about the union rep. I actually taught both her daughters so she would be an easy contact.
Again...I have seen people posting about jaw stuff again. If you have any questions, I am happy to answer. We each have our own "special" ra issue and need to learn from each other!
Just hold on rocckyd! Although I haven't been in the same physical state that you are in right now, I know all too well the "winner" dad scenario . . . garnishments and all. Just keep pluggin' honey . . . Nathan deserves it. You are obviously a strong woman and Nathan couldn't have asked for a better mom . . . and, trust me, he will know that in the end. Don't be embarrassed by the length of the thread . . . that just denotes its importance to everybody. You are not the only one who is gaining from the responses here, you know . . . we all are! How easy it would have been for you to just give up . . . too easy . . . but you haven't. You HAVEN'T! Congratulations on your victories so far, and I hope for many more to come.
I still pray for you daily Rebecca. One day you are going to post that things are better, your joints are better, your jaw is better..... and I'm going to be so happy for you that I cry. I'm looking forward to that.
Hang in there girlie
Aww Waddie, that's exactly how I feel! You have such a lovely way with words. Thank you for summing up my feelings about this thread and Miss Rebecca so beautifully. You are a treasure!You guys are great! I feel for everyone on this board. We all have our own circumstances, and none are easy. I know from the support that you guys have shown me how helpful it can be. We can't change anybodys situation, but we can at least empathize(is that how that is spelled?).
So, this morning I rolled my ankle. As soon as I got to school I found my coworker who is also the athletic trainer. He looked at it and said it needed to be xrayed. I told him I needed to stay until 12. After that I coteach so I wouldn't need a sub. He did a great tape job on it. So, yes...I did get it looked at. It looks like I chipped the side. This is the same thing that I did to my left ankle over the summer. The dr. laughed when I came in-said I looked like a football player with the tape job. As soon as it came undone the whole ankle just ballooned. Very Impressive! So, I just an aircast for today and I see the ortho tomorrow. Urgent care dr. is thinking a boot would be better but they don't have those at the urgent care clnic. Not on crutches-really can't handle them well with the rib inflammation. I got a number of cortisone shots through the sternum on Monday cause the whole area was red and inflammed. Crutches just pull to hard on those muscles. So, I limped in, and I limped out. I was supposed to go to Richmond on a field trip tomorrow. Asked the dr. honestly if he thought I could do it and he said no way. 3hrs. on a bus each way and then the Holocaust museum. He didn't think I would make it off the bus-sitting that long without being able to move it around. So, ortho tomorrow it is. Dr. also didn't want to go until Monday without it getting looked at. I asked him why I keep "chipping" the bones and not just a clean break. A break is often better. He said that my joint's are "off" anyway, plus steriod usage makes them weak. The chip often happens when the tendons and ligaments snap like a rubber band against the bone. For most people, the bone is strong enough to withstand it.
So, found out if I end up taking disability, I won't even earn enough to cover my mortgage payment. How do people do it????
This is the jaw diary.....jaw feels like dirt. Looks like I have been slapped on each side due to the redness. Luckily, if I wear my hair down, it isn't too noticable. Set up my presurgical appointment in Richmond for the 24th. They only had a 10:00am so it will be an early start to the day for the road trip. I am on a cancellation for a later appt. but it needs to be a longer block of time than a reg. one, so not too hopeful. He is actually out for a bit at a TMJ conference so he is pretty booked up. Oh well, they were great at fitting me in for the intial appt. I avoided the avg. 3month wait since my reg. surgeon is friends with him. And, he moved things around to get my surgery in over break. I guess that deserves and early morning rise and shine!
I tend to snap at the ligements pretty easy my self. I just do not have any elasticity. I tend to tear ligements have not chipped any bones that I know of.
I hope things work out for you. Continued prayers.
Rebecca, you are one brave and feisty lady, ggod on you for not giving in, you are very inspiring! Best of luck, and you are in my prayers, Janie.Went to the ortho and I am now sporting a bright green cast. Chipped it. Hopefully I'll be in this for only 3 weeks. Dr. said he would like it off before the jaw surgery. One less problem to deal with. He did say that after the cast, I'll have an air cast for a number of weeks.
As I have said before, I think I am lucky in the fact that I've always had RA while working and being a mom. I've never known it any different. I really feel for those that are creating a life and then get hit with RA. I think that must be incredibly hard....
((((((Rebecca)))))))
Rebecca, where are you at so I can send people to protect you from yourself and also take care of you?? Morning all! I am up bright an early to head to my pre-surgical appt. in Richmond. It's a 3 hr dr...rise and shine. Two of my close friends are going with me. We'll hit the mall and hang out for a bit afterwards. Got to make something fun out of all of this.
I am really stressed about this surgery. It is far bigger than any one I have had. The total liquids till June is a scary thought. Then I have stage 2 and it begins all over again. I am hoping the appt. today will alleve some of my concerns...or it will just give me more to worry about.
The countdown till the 30th has begun....
Here's a big hug for you Rebecca I will continue to pray that this surgery gives you some much deserved relief!
ps. Does an all liquid diet happen to include milkshakes? I LOVE milkshakesAnd more of what those who wrote above me......from me, this time.
Again, sorry you're having to endure this Rebecca. But I really do like the detailed walk-through of the course of treatment and the effects. Education is power and you've given us that. Thank you.
Hope all went well with the appt. I am concerned for you and hope for the very best pain free outcome ever!
Had my presurgical consult yesterday. Made a day of it with friends. If I am going to spend 6hrs total in the car for an appt., gotta do something fun. Ate lunch and dinner out and spent the day wandering thru a very large mall. I really miss large malls since moving away from DC....
So...still stressed. It will be a 6hr surgery. That's LONG! Wasn't expecting to hear that. It's all just coming up so fast. My best friend comes into town on Sunday and then we will head to Richmond on Monday. Surgery Tuesday...and then the long long recovery/rehab..and then take 2. Sigh...
You are one tough cookie Rebecca, I know you can handle this. I will be praying with all my might!
Waddie
Prayers and well wishes. I hope you get miraculas outcome from all of this. Prayers for an extra bunch of inner strength to get you through the recovery and waiting stages. Rebecca,
I'm thinking of you and hoping for nothing but the absolute best. You've very brave and I really admire that about you.
Sending hugs.
I am not brave. I am scared to death. A 6 hr. surgery seems so long. Alot can go wrong in 6hrs. What the heck can he do for 6hrs????
Oh...and fluids until June...and then Stage 2...and then 10-12 weeks of rehab again....
I just can't wrap my head around all of this...
Seeing as how I can't sleep, I am using my nervous energy for good. My best friend arrives tomorrow. So, the house will be nice and clean. I figure I can be sore and tired for the next few days....won't be doing much. I met this girl in 5th grade at summer camp. We shared a bunk. Left for the summer and saw each other again in high school. Small world. We then continued our camp story by working at a residential summer camp through college. There are not many people who will come and stay with you a week while you are in a hospital/hotel. She lives about 7hrs away and we try to get together at least 4 times a year. Our boys are 6 weeks apart-couldn't have planned it better :) So, that is one good thing about the situation.
Really...not brave. Freakishly freaked out...
rocckyd2010-03-27 18:42:08It sounds horrible. On the other hand you have been so miserable and I like to think that this can make your life easier in the long run.
I wish so many good things for you. I know you do not feel brave at the moment. Wow I wish I had some words of wisdom and comfort.
So many prayers my friend. I am glad you get to see your friend.
Oh baloney, Rebecca, you ARE brave even though you may not think so. If tyou weren't brave you wouldn't be having the surgery!
Some level of anxiety is probably to be expected. Try not to wrap your head around anything except the next 24 hours. You've got a lot on your plate and one day at a time should be plenty.
As far as what they're going to do for 6 hours.....if you're really curious ask if you could have a video of your surgery. But I can tell you here and now that it will take 6 hours because they're going to be very, very careful. I'm sure you've chosen your surgeon well so it's time to turn over your faith in his/her skills. Let the surgeon do his job. YOUR job is to take a nice nap under anesthesia.
Wow, what a wonderful friend. You're very lucky. She's going to be your advocate while you're in the hospital, so you just sit back and let her do the hard work.
I know how you feel...
Rebecca, I am adding you to my prayers too! I feel very confident that all will go well. It's great that you have your good friend with you. You must be very special to her and, you are very special to all of us. Perhaps your friend could keep us posted?
I know you don't feel strong, but you are! You can do this. Like Waddie said... right foot, left foot, breathe in, breathe out. I will continue to pray for you, especially on Tuesday. Go get 'em girl!
Been thinking about you, Rebecca. Sending prayers and good thoughts your way!Best Wishes and Get Well Soon! Or at least better I'm sorry for your trouble.Rebecca, what an ordeal in so many ways! We should get you on the Oprah show as inspiration for the audience and financial help for you!
I don't know when you'll be up to getting online post-op, but I want you to know ....
my heart, thoughts, prayers and hugs are with you!
CathyMarie
Stage 2 has been changed from June 14th to July 28th. Seriously?!?!? It seems that the joints are ready. The surgeon is not happy, but there is nothing he can do about it. They are being made somewhere out in California-TMJ Concepts. What-is there a backorder on jaw joints? Do all the cool kids want one?
I am not happy to say the least. I was barely holding on as it is....
Oh come on, joints not ready, on back order!!! I don't blame you for being unhappy and it's so frustrating because you have no control over the situation. Is there anything your surgeon can do....request a rush, move to the front of the line, etc. due to the circumstances involved with your medical situation? I'm really sorry to hear this. I'm at a loss for words and all I can do is send you a hug. LindyNope....they are custom made, so not much we can do. It normally takes them at least 6-8 weeks anyway. I'd say that I would grin and bear it...but my cheeks are swollen so I can't. So instead of :) I'll say :I rocckyd2010-05-23 12:27:31DAMN, I guess you haven't lost your sense of humor but I tell you I don't know how you manage. I know that your son is your sanity's mainstay and I understand that. The one good thing about this delay is that it may give your jaw, cheeks time to return to your normal and the surgery may be an easier go. I know that's not much consolation but you have to look for the positives in this and I know that you do that routinely. Maybe, just maybe they'll have the implant ready before July 28th and your surgeon and schedule you sooner. Lindy
Well sometimes things happen for a reason. This may or may not be one of those times? I hope some how it benifits you in long run.
ARGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH !
Saw the surgeon on Thursday. He is very happy with how the jaw looks right now. He is NOT happy about the surgery date. But, there is not much we can do. He did say that he received notification that they are working on the mold for the joints. So, we are sticking with July 28th as the date. He and I both just want this done. He did take the 4 screws out that were in my mouth. There were two up top and two on the botom. They stuck out and pushed into the inner lip. OUCH puts it midly.
Ra wise things are still awful. Saw the RD and he is very concerned about Cushing's syndrome. I have the round face, and haven't had a period since Feb(too much info huh?). I have many other issues that lead to this syndrome. So, we are cutting the pred. Of course, it's a fine line-got to be able to breathe and function. We aren't going below 10mg anytime soon. He is worried that my system won't be able to handle the stress of suregery if we go below. Isn't is always something? He isn't sure what to do RA wise so I go to Duke on the 21st. Maybe they will have some new ideas.
So...not too much more to report. Just chugging along...Hi Roccky, I was hoping you were going to tell us the date was moved up; that's always a possiblity. Several years ago Cushings Disease developed after I tapered off Pred. I was off for about 8-10 days and became extremely ill. Restarted Pred at 5mg lifelong. Hope Duke has some help for you. Hugs, LindyRough day today-the eyes are just awful. The kids keeping asking if I have been crying. I see the optho on Monday to start Lacrisert. Basically they are these little capsules that you insert in your eyes at the start of the day. Hopefully I can wait until then to see him and not earlier. My right eye feels the same as it did when I had Keratits a few weeks ago. I'll call him and hopefully he'll just phone in a perscription. It's exam week-last week of school. I have to be here every day barring death or dismemberment! Plus, I want to be here-it's the last time I'll see these little darlings. Of course, vision is necessary....
Signed my contract for next year. I have too at this point. I talked to the surgeon on Thursday. In a perfect world, he said I could go back to work after Labor day. This would cause me to miss staff week and two student weeks. But, this date is not taking into account the RA complications. I go to Duke two weeks from today. I am praying that they have some other ideas. The situations is way more complicated due to the hiring freezes in effect. I talked to a friend of mine who is in personnel for another school system. She said that they are planning for the freeze to be in effect for at least 3-5 years. I had planned on applying for the disablilty and then subbing in the county to keep my foot in the door. I can earn up to 00 a month and still receive benefits. I was hoping after a year or two, things would be much more under control and I would be able to return to my job. Well, subbing does not count when it comes to the hiring freeze. I would not be available for hire as a full time teacher. This upcoming school year, the only person hired was a new band director. All other positions were filled by shifting around employees. This is how I ended up in 3rd grade.
Sigh yet again.... I do have an appointment set up with my teacher's union rep to make sure that I am following all necessary steps to protect myself. She is very eager to talk to me-maybe she has some insight.
Nathan has his first summer swim meet today. He is super excited. He wore his team shirt to school today-bright neon orange. Looked like a safety cone at the bus stop. He is feeling pretty proud of himself. On Saturday they had morning practice. Afterwards, they let the kids jump off the diving boards. The high dive is restricted to 10yrs and up. Since it was swimteam, they allowed all the kids to jump. I didn't think he would do it, but he flung himself right off it. I know that I would have been scared at 6.
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good luck Nathan!!
Hang in there, Rebecca...
something's got to work!! I will hold off with grand hopes for Duke to come through for you..
I read about the med pill that goes in your eye.. I also read that sometimes you need the drops to help it dissolve..some of us are that depraved of tears..
Good luck.
Rebecca- I'm sorry to see you are still struggling so hard. Keep fighting- you are so strong. When I read about what you are still doing while enduring everything with your health- I am so proud of you. You have a rough job too- teaching kids day in and out has it's rewards but hey- I know what kinds of kids are out there-and they are not all fun. I know my son is a thorn in every teacher's side even though I've tried to bring him up right. Some of them just go thru an annoying punk stage.
Then you go home and have a little boy who needs you. You go girl!!!!
I keep you in my prayers!
Good morning my friends!
Went to Duke yesterday. I always forget how big that place is, and there are cranes everywhere since they are expanding.
I really like my RD there. If I didn't like my one here so much, I would do the 3hr drive gladly to see the Duke dude. Anyway, he kept saying that I don't quite fit the mold for RA/JRA, but he is still confident that that is what we are dealing with. But, he also feels that there may be other autoimmune issues going on. I told him that I don't want disability, and he needed to find a way to prevent it.
Big question is what to do med wise. I was due Rituxan at the beginning of this month but it didn't happen due to the surgery. Plus, we don't think it is working. But, I have had a crazy time these last few weeks-is that because the Rituxan was actually doing something and I am now flaring? ARGH. So, Duke dude threw out a ton of ideas. He did say if I wanted to go back down the ladder, he would reccommend Humira. As far as meds not tried-he thought Immuran. He said that it is also good for lung issues-which I have been having as well. He said Actemra is an option, but Humira has a better track record helping with the hands. Who Knew??? He was most concerned with the eyes. He rattled off a ton of other autoimmune disorders that can mess with the eyes as well. But, it could also be the JRA. He really wants me to see the eye specialist down there. It seems one of the drs has developed a number of techniques that other Opthos are using for autoimmune eye issues. I told him that I don't mind coming back down, but could it happen before the jaw surgery? He said he would try to cash in on a favor and the office should call me by Friday with an appt. If they can't fit me in, no big deal. I'll just go when I get an appt. Life just gets crazy after the jaw surgery with all the PT and followup appts in Richmond(3 hrs the other direction...).
He did say I was really "unique". Well duh-Haven't we always known that? I am sero-negative as far the the RF. The Anti-CCP comes up positive and my sed rate is always elevated. He said that most lung issues are seen in sero positive patients. The jaw destruction at the level that I have is also usually seen in the RF postive patients as well. He did say that there will always be patients that don't fit the descriptions-and those are the people that he sees.
So, a good visit. Just a lot to talk to my Rd here about. I see him the first week of July. The Duke rd didn't schedule a return appt. for himself. He just said to call when we feel that I have hit another wall and they'll fit me in. He did say to stop by on the day that I have the eye appt.
rocckyd2010-06-22 18:16:23WOW, I like the Duke Dude......thinks outside the box and you know there are times when that's appropriate. I like a doctor who thinks that way. You're lucky you found him. Who knows Humira might kick in this time. I'm so sorry about the flare, the last thing you needed to happen but it was expected. Sometimes it's a little easier when we know it's coming. Keep us updated on how you're feeling. A bunch of us think about you and wonder. LindyI like the Duke Dude too! I think that is fascinating - Immuran working better on lung issues and Humira on hands! Who knew, indeed! At my last visit, RD said if I wasn't satisfied with the sulfasalizine, I could try Immuran and now I'm thinking that might be a good idea given my lung issues. Also interesting about the eyes and other autoimmune diseases, did he say which?
I know you have had a rough time of things, but it is wonderful you have found such a great team of doctors! I know this is little compensation given what you are having to go through, but I glad to know you are so well looked after.
Of course you're special! They could've just asked us about that!
Rebecca.. I am so sorry you're having flare issues! and the eyes!! I hope they can do something for you..
I have SS too.. and it's one of the things I fear the most is my sight being affected. DO you not take restasis or anything for the sicca? and can they plug your tear ducts??
I am sorry to hear of your friend's friend and his "accident" These men who put their lives on the line on any given day are not given enough kudos for the jobs they must perform.
Hang in there..
So...got a call while at the beach that joints still are not ready. TMJ Concepts now promises that they will be ready by the 5th. AARRGGHHH!!! First time it was to be June 14th, then July 28th. Needless to say, this puts a kink in the plans. My sister had been planning on spending the week with me. This is not an option any longer due to the fact that it will be staff week for the new school year. Why does this stupid surgery have to be 3hrs away? The surgeon is trying to secure at least a 2day inpatient stay. This will make it easier for someone to drop me off and then return later. If insurance wants to do a day by day situation, it will be harder to work out getting picked up from the hospital. Of course, he still wants me to stay in the area a few more days.
The only people madder than I am are the surgeon and the hospital cordinator. The cordinator has gone so far as to offer me a ride to Richmond. Her sister lives in the same town I do, so she would spend the night and take me that morning. I'm not going to resort to this, but it is so nice of her to offer. Hopefully I can work something out. Can't it ever be easy?
It's been one thing after another.. I hope that means that all aspects of the surgery will be easy! Hang in there.
where are you having the surgery again?
Originally-June 14th
rescheduled-July 28th
yet again-Aug. 5th
This just needs to happen. I was due Rituxan in May. Didn't get it due to the surgery. Also, considering a med change. Doesn't matter-need the surgery first. All these setbacks are starting to hurt-literally. Unfortunately, TMJ Concepts are pretty much it