The week of dr. appts.....
Saw the jaw surgeon on Monday. 6hrs in the car for a 25min appointment. Fabulous...
Anyway, he is pretty happy with the jaw. My opening is at 25mm. To give you an idea of how wide that is, I can fit 7 tongue depressers stacked in my mouth. He was hoping for 30mm. But, he said he wouldn't be too concerned until we reach the 8 week mark. By then, he wants 35mm. I keep forgetting that it won't even have a month until Sept. 5th. So much has happened since then. He is just super concerned about me scarring down. It seems I lay down scar tissue much much faster than the average patient. He things much of it is due to the ra and the whole crazy immune system I asked him, worse case scenario, what would happen if I did scar down. He said that he would go back in and clean it out. But, the fact that the joint is artifical would make it easier. He wouldn't have to clean up the joint. He also said, let's not worry about that until-or if-we get there. If I stay at 25mm, that's fine. That is considered the bare minimum for the surgery to be called successful. But he is convinced that I can open MUCH wider. I don't mind staying at 25mm-He said that he measured me at 13mm prior. So, regardless, I'm already at a better point now. It just can't scar down. I see him again in 2 weeks. In the meantime-continue the agressive PT.
Rheumy today. Kinda a pointless appt. A whole lot of- "I don't know", "I'm not sure". This is in regards to the lungs. I have a repeat CT in October and PFT's when the jaw has healed enough. We did talk about a new biologic, but not at this time. I'm currently down to 30mg of pred. He wants me down to 5mg before we start a new one. It would most likely be Actemra at this point. He just feels that my immune system has taken such a beating since the surgery, pneumonia, and the 60mg of steriods. Add to that the fact that I am planning on teaching 3rd grade in two weeks. Tons of germy kids! So, I'm to drop down 5mg a week until I get to 10mg. Then it will be a slower process. I see him again in November. By then, I should be down to 5mg and have had the CT and PFT's. Lowering the pred will also allow any issues of the lungs to be more apparent on the Ct. But, he did say that if my flare gets worse that I need to call. He told me it's going to be tough, especially if I really feel that I need to return to the classroom. He feels that it's going to be more of a pain management issue for a bit until we get most of the pred out of my system. If breathing becomes an issue-I am to contact them immeadiately. It's a fine line....
I do go to Duke tomorrow to get the opinion of the RD there. Mine here is all for it. We just want to make sure that we aren't missing something. All this is kinda scary and very very overwhelming. So-another 3 hr. road trip. I also see the eye dr. in the evening. When my eyes become inflammed, they water excessively. My left eye looks like I am crying. The waiter at the restaurant I was at yesterday asked if I was crying. Gotta stop....
So, there it is. Tonight is Nathan's first football game. He is very excited. Tomorrow my parents will take him to school to meet his teacher while I'm at Duke. Once again, I know it's not a big deal, but i'm mad to be missing out on something once again. I want to be the one to take him to meet his teacher. Oh well....
Awww Becca,
My steaks are thicker than 25mm. You are such a brave little soldier and I'm so proud of you and your progress. How impatient we are when it comes to healing. Germy kids is right. Keep up the good work. I keep you in my thoughts.
I'm so sorry you're going through all this - big gentle hugsRebecca, I can't believe all that you have to go through, makes me feel like my whining about far less serious effects from the RA is --- well... at a minimum ... relatively short sighted. (Count your blessing Roland!). I admire your courage in dealing with all of this.
So, did the doctor rounds.
Went to Richmond yesterday for a jaw checkup. He's pretty happy with it. Measured 24mm-not the 30mm he wants. But he-very vary painfully-manipulated the jaw and said that I have not yet reached the max. opening. He he still very confident that will get to 30+. Sutures and swelling still look good. Once again, his biggest concern is bony ankylosis. That is when bone grows to bone. That is what happened inbetween the two surgeries. We have to keep the jaw moving until I reach the max. opening. So, no end to pt in the future. He actually said that until we decide on a RA med and get it under control, I'll be in PT. The funky immune system encourages improper healing.
So, that quickly led us into another conversation. I told him about the whole "dueling docs" problem. Dr. P (Local dr.) wants to wait until Nov. to add a new biologic. My appt. is Nov. 23. This is supposed to allow time for me to reduce the pred. That would be a long time to continue PT! Dr. K (Duke Dude) wants to add a biologic now. Then, once the ra is controlled and I reach at least 30mm, we can say goodbye to PT!
I asked Dr Z(jaw dr) what he would do. Which dr. should I choose? He said the problem is that they are both 100% correct. Local dr: immune system is whacked. We need to decrease the pred down to 10mg before adding a biologic. Teaching 3rd grade and he germs will only make things worse. Duke dude: pred is the bigger problem. Adding a biologic now will allow me to get off the pred at a quicker rate. Dr. Z just told me to go with my gut. Actually, he asked if I am allowed to drink on my meds. I said it's ok once and a while. So, he said to go home, have a glass of wine and relax. That's a good prescription!
Also, I got my CT scans results. The good thing about Duke is that you have access online to results. It showed something called "air trapping" Basically, when I breathe out, all the CO2 doesn't leave. So when I inhale, there isn't room in my lungs. This is why I feel so short of breath. This, combined with the PFT that showed a diffusion problem is not good.
So...after lots of back and forth, I've decided to go with Duke. I hate the fact that I will need to drive back and forth(6hrs roundtrip) but they are tops in the country in all my problem areas: Rheumatology, Opthomology, Pulmonology(spelling?). My only problem here is finding a local dr here who can see me when something pops up. My primary care dr. won't touch me unless it is something like strep or an ear infection I see my pain management dr. on Thursday. He has known me for 7yrs. I am hoping that he will agree to be my "go to guy" here.
So-there is the latest. I am going back to work on Monday. I am literally sick to my stomach about this. I feel like total utter dirt right now. There's really no point in whining cause I know we all feel the same way. I just can't believe how quickly this time went by.
Never dull...
Went on thursday to get bloodwork. White count came back high at 23. So, dr. ordered a chest xray which came back "abnormal". This is not my RD, this is my pain management dr who is providing my local care. He made some calls and instead of admitting me, told me that Duke would be expecting me in the morning. So, Friday morning-rise and shine, and I hit the road for the medical metropolis that is Duke Medical Center. And....here I still sit
1-adrenal glands are shot. Predisone causes your glands to quit working when used for extended periods of time. The glands release cortisol which gives your body a boost in stressful situations. Possibly the surgery, healing, and going back to work just caused too much stress on my system.
2-possibly a virus? Dr. did here a rattle in my rt. lung. He is thinking this is RA damage, but it could be a virus of some sort.
There you have it. My veins are awful so they put a pic line in. Fun...
This is soo incredibly old.
Still in the hospital...
Drs still aren't sure about the cause. If it's adrenal, I'll truly be dependent on steriods.
Problem is still the pulse rate. Sitting in bed I'm a normal 90ish. As soon as my feet his the floor it's 150+. I don't even have to take a step. Obviously not normal.
Had a stress test today. That was pretty crazy. I can't do the treadmill so they injected medicine to make my heart race. There was a cardiologist, a tech, and a nurse in the room. When the put the med in and my heart started to race, their eyes all got really big. The dr. looked at me and laughed. It seems they don't get alot of people my age getting this done. They were impressed at how quickly my heartbeat quickened-said it looked really cool on the monitors. Glad to oblige. So-passed that test. The follow-up EKG showed some abnormality. The cardio said that if I was 70 it wouldn't be an issue, but at 34 my ekg should be perfect. Tomorrow I'll be having a tilt test done. The point of this is to see if there is a certain angle or position that is causing this crazy pulse issue. Dr. also added a med that helps control pressures to start tonight and one that is used in place of steriods in adrenal issues.
My fav. dr (pain management) was consulted and will be stopping by in the morning. Love him-it will be nice to see a familiar dr. Honestly, everybody has been incredibly nice. The biggest concern is that I leave here without a definite cause. The hospitalist made it clear that he wants to get to the bottom of this, but I can't live in the hospital forever. Obviously I'm adding a cardiologist to the mix.
My parents dropped Nathan off up here for about an hour. He read me his homework book(if you give a pig a pancake) and we did spelling words. My heart literally aches when he leaves. I've missed about a week so far(this whole mess started last Friday @Duke). My parents have been wonderful driving him to practices and keeping his schedule the same. I just want to squeeze him
So, my system is still completely shot. Nathan will stay with my parents again tomorrow. Sat is my nephew's 8th bday. If I'm feeling pretty good, I'll go and bring Nathan back with me. I miss the little guy. Tues is Duke. The RD and I have been emailing back and forth. He said to gather as much of the discharge summary and results as possible and we'll have a pow wow. He had been leaning toward Enbrel mainly because I was looking for an easy med without taking time off from work. I took it back in'99. He is now thinking that maybe Actemra is the one(flashback:I've been on Enbrel, Humira, Remicade, Orencia, and Rituxan). He had initially said that he had had some patients have some rather serious side effects and would want to hold off. But, if the Ra is in anyway causing these issues, it needs to be addressed. But, if we do this route, he is requring me to have a port. I have been told that I need a port many times, but I've said no. Getting the picc line at the hospital reinforced the fac that I need the port. It's just that a port makes a medical problem so much more real, you know? It's purely psychological. One of the nurses brought one into my room so I could look at it. Blech...
Off to Duke today. Hopefully they will have some answers. Is it sad that I threw some extra clothes in a bag just in case? My track record for leaving appts. and making it home isn't too good.no quitting!!
You are so close to figuring this out.. I know it.
Hang in there.. as I said before..
come here.. vent.. cry.. do whatever you need to keep your sanity and calm.
*hugs*
Home once again....
Hey-I made it to an appointment and home without going inpatient--woot woot!
Long day. We have made a med decision. As you guys know, I've gone up the med ladder. For now, Dr. wants me to go back on Orencia. Number of reasons for this. 1) Other than the jaw joints, it seemed to be working. Now, the jaw isn't an issue. Plus, dr. feels that it is more readily apparent as to whether it is working or not. It doesn't take as long as some of the others. Also, it seems Orencia has some track record with lung issues and eyes. Two of my big problems. If the Orencia doesn't work, dr said we will quickly switch to Actemra. I'm still black and blue from my last admission. I had a ton of sticks while in the ER and ambulance last week prior to admission. Once in, they installed a picc line. Dr refuses to administer the Orencia without a port. I understand the logic-I just don't want one. But, the time has come and a port it will be. Dr. is hoping to get me back down to Duke within the next 2 weeks for the quick outpatient surgery.
We spent a long time talking about the latest admission. Drs are still trying to figure out exactly what is going on. The blood pressue/pulse issues are the biggie. Standing up, my pressure will drop by 20+ and my pulse will go up to 140-150bpm. As you can imagine, this doesn't feel very good. For now I will stay on the Florinef. This in combo with 50mg of steriods will hopefully prevent an acute situation like what happened last week. I see the Cardio again on the 27th. RD would like to have a halter moniter test done. However, he would rather the dr. up here order it for now. Depending on what the cardio thinks, he may order a consult down at Duke, but he wants me to have a local heart dr. as well. If a halter test isn't ordered, he will order one next month. There are a number of tests that can be done to determine if the adrenal glands have, in fact, be shut down due to steriod use. However, many of them aren't accurate while a person is in an adrenal crises. For now, RD wants to wait a few weeks to allow my body time to recover from this latest episode. Then, we will investigate further. For now, the med changes will hopefully keep me out of the hospital(fingers crossed!).
Work...RD does feel that I do need to take a bit of a break. Add his name to the list. However, he does agree with me when I say that I am much much happier when I work. He feels that he has a few patients that physically become more ill when off. I need that interaction. But, full time work just might not be the option. This morning I'm going to go and talk to my principal and then by the school board office. I also emailed are union rep. I just wish the school system would allow me to take a year off and still hold my position. Just makes me soo incredibly mad. On disability, I can earn about 00 a month. Thinking maybe tutoring at Sylvan Learning Centers are a similiar place might be an option. I don't know... It's just so much to think about. Maybe the school system will be able to give am another option.
I feel pretty much beaten down at this point. I just don't understand how I can do everything that is asked of me, yet still be in this situation. It's just not fair. I know that you guys get it...
Wishing you the best.
Take care,
Lynn
So-talked to my principal today. He is very supportive. He said he wished he could give me a big hug and a million dollars. Hmmm...sounds good to me!
I have an appt. tomorrow to go to central office and talk options. Duke called and I go down on the 14th for the port placement. He wasn't kidding when he told me he was going to act fast. He finally got the "yes" out of my mouth and he isn't waiting for me to change my mind. The RD was surprised that pulmonology wasn't consulted last week. While sitting in the waiting room, I read through the discharge summary. The cardiologist was under the impression that I was seeing a pulmonologist as well as the rd on the same day. No clue how that came about. So, rd called and set up an appt. tomorrow morning bright and early with a pulmonologist up here at home.
How do you guys keep on going? I just want to curl up and hide...not for too long..just a bit:)
you are doing great.. just keep hanging on. it's all you CAN do..
This will be resolved..
(there's not anything wrong with wanting to crawl up a little and get a break)
So, I've been pretty busy these past few days.
Got some questions answered at central office. I was under the impression that if I took disability from the county I could no longer work in the schools-at all. But, instructional assistants do not receive benefits, so that would be an option. I can earn up to 00 a month so I could be an IA sub and work a few days a month. That way I can stay in the schools. But-I don't know if I can handle not having my own classroom. Tomorrow I have a meeting with my union rep and the county lawyer to begin the paperwork process. This sucks...
Had an appt. with a new pulmonologist. Really really like him. We just sat and talked for about 30min. He has a list of about 10 things he wants to check off. Basically tests and scans. He really wants to do a stress echo within the next week. He wants to check something on the left side of the heart. He also told me that I have "wacky lungs". Does this count as a diagnosis? He said that he can hear something at one moment, and not the next. Hopefully his thousands of tests will shed some light here. My cardiologist is right across the hall so that makes life easy. He said that the two of them will have a pow wow and then get back to me. I see the cardio again on the 27th. Lung testing should be done by then, then it's time for heart fun!
I'm still on 50mg of pred. I'm to decrease down to 40mg next week. The florinef has helped. This med makes you retain every bit of salt that you eat. This is do help with electolytes and blood pressure. But-salt makes you retain water which=weight gain. 50mg pred=weight gain. So incredibly mad since I was starting to lose a noticeable amount of weight. ARGH! But, I don't feel like I've run a marathon each time I stand up with a pulse of 150+. I just feel like I've run around the block. So, I don't feel good, but I don't feel like I'm about to stroke out. That's a plus!
Tomorrow I see my pain management dr. Not quite sure how that appt will go. I often feel like I'm healthier than I am
Saw the jaw surgeon today. He is very happy with the implant and jaw itself but not about the inflammation. I'm on 50mg of pred-there should be no swelling. He's going to call the rheumy tomorrow. He's hoping that starting a new biologic will cut down on the inflammation. Still-my opening today was 27mm. This is huge compared to what it was pre-surgery.
Not looking forward to tomorrow at all....
I wish you the best at getting a quick resolve. A working solution to a slower rollercoaster ride with less steep hills and fewer of those jerky turns.
Prayers kiddo!
Thanks Milly.
Busy week this week.
See the Cardiologist tomorrow. I don't think it's going to be a good appt. I passed out again last week after standing up too quickly. Had a really hard time today at church. I'm Catholic-alot of up and down during mass. I did get up at one point and walked out. I roamed the halls a bit to calm everything down.
Eye dr on Tues-really having a ton of left eye pain. That usually tends to be scleritis or uveitis.
I then have an apppointment at the school board office to talk about disability. I have a huge binder of info. Tons of appointment notes and discharge reports from the hospital admissions. I have to file first with the VRS-Virginia Retirement Services and then with Social Security. The VRS people think I should get approved the first time around. But, I also hear all the stories of people being denied time and time again. But, I've only worked 10 days this school year. It seems the port placement surgery is also an added bonus. Hmmmmmm
Plus...I have PT 4x as well. Busy Busy....
I think the hardest part of all this is that I feel like I am losing myself. One of the first things that you are asked is -what do you do? I've always been so happy to answer "teacher". Now, there is nothing to say. I'm a 34yr old single mom who can't work, who can't stand up without falling over, and has some stupid foreign object placed in her chest to get medicine...what a catch huh?
Saw the cardiologist yesterday. I really like her. She is this 5ft nothing whirlwind. She wants me to wear a halter monitor for 30 days to track the pulse rate. Can't wait! I'm really frustrated about this whole situation. I had lost over 20lbs this summer. Now with the pred increase and adding the Florinef(which makes you retain salt-on purpose!), it's all coming back. ARGH! Dr. doesn't want to change any meds now. I have a number of pulmonology tests next week. She wants those results first. I just want to get some form of my old body back. The face is slowly returning to the shape from before. Now I need the rest of me to follow! These crazy med changes are not helping. Cardio agrees that this is going to be a long process.
Eye dr. was as expected. Left with antibiotic drops, reg. drops, and ointment. He really wants the optho down at Duke to see them right now since they are flaring, but he doesn't want me to make the drive. So he is sending down a detailed report. I see him again on Thurs. He asked about the port and the latest saga and just gave me a huge hug. He is very religious and has been my eye dr. for years. He just gave me a huge hug. Love him.
Officially filed papers today for disability. Nothing else to really say about that :(
How long have you been taking the Rituxin? It just seems to me that Joonie was havinf simalar problems with a high pulse rate and high blood pressure when she was taking a biologic I can not exactly remember which one?
Just wondering if you had any med changes before or when this all started?
I know they where making you lower your pred at a fast pace so I can see why they thought maybe it was an endocrin issue. Well I am just fishing scince no one can seem to find anything to explain the problem yet.
I hope they find the answer soon. This is all so exhausting just listen to all of the appointments. Speaking of which I need to make some appointments myself. As well as I have to go gets some test done. Arghh! I hope they do not cut a piece of my lip out. RD is freaking out about the swollen glands. Good it is about time someone freaked out. So I get a ct and something else I can not read. LOL
Just with the muscle stuff he is repeating test that have been done several times before. So I do not expect any answers on the muscle issues for awhile. Who knows maybe those test will be different this time. I doubt it.
So I will go see my GP and have him run a few different test also.
I wish you luck on finding a reason for all of this.
Oh Rebecca... I'm so sorry.... Sending a big hug and lots of prayers!Got a call from Duke @8:00am this morning. Insurance came thru with the Orencia approval. The nurse from the infusion clinic said my dr. has been on them for the last 2 weeks-wants me in ASAP. They asked if I could do today but I'm 3hrs away. So, Monday it is. I did Orencia a few years ago. One of the main reasons I quit it was the jaw involvement. That's not a problem now since my jaw xray makes me look like the Terminator! The other reason was the lack of vein access. If the Orencia doesn't seem to be the med for me, we'll move quickly on to Actemra. It seems the rheumy and the jaw surgeon had a long phone conversation earlier in the week. Surgeon is positive that most of the inflammation I have now is due to RA and not surgical healing. I can't say enough how important it is to find drs who will talk to each other.
So, my new port will be put to good use. Next week will be crazy-Infusion on Monday, 30 day halter montior appt on Tuesday. They'll show me how to make it work and it will track my pulse to help us figure this mess out. Wed. I have pulmonary function testing, possibly an exercise echo, and then a follow up with the dr. Thurs is another eye followup. Oh-and physical therapy 3x.
Gotta go-tonight is the high school's homecoming parade. Nathan gets to ride on a float with the Biddy Football Team. He's very excited.-looking forward to it all week.
Great on the Doctor communication. Horray for the Orencia. I hope it works wonders for you. Sometimes they say it is better the second time around with some of these meds. Not sure why but taking a breather and going back on them later is sometimes the needed trick for them to work?
I am glad you are feelling up to the parade. I am sure Nathan will love it.
Good luck with the Orencia.. I hope it works for you and the 27 mm IS huge!!
and I think you would be forgiven if you do not do the UP and down.. I don't do it when I go to church... sometimes, I sit and bow my head for prayer and continue w/ the service.. but do not stand ... and if attending catholic services I do NOT ever kneel.. that can flare me in a second.
Hmmmm....too bad I'm a Hockey fan :)Too bad mindless people have nothing to do but visit forums for the health-challenged (sez me who was born in the bush)
Lorraine
lorrie2010-10-25 00:11:07whew...what a day!
Had an appointment at Duke today. Left here around 8:00-things going well. 3 hrs later I make it to the exit, and BAM-flat tire. Seriously folks...somebody, somewhere is laughing at me. I could actually see Duke--so close, yet soo far away. First thing I did was call the dr. They said as long as I could get there by 4, they would fit me in. This was very nice of them. They had already double booked my orginal appt so I know his schedule as already nuts. Luckily, everything got taken care of pretty quickly. Roadside assistance changed my tire out within 1/2hr. Drove to tire place with the spare. They got everything taken care of within 45min. Then, off to Duke.
Pulse rate still an issue. It was 130 just sitting in the office. This is really really driving me crazy. Before the RD came in, a RD fellow came in first. He was good-asked a million questions. Most centering around the pulse/cardiac stuff. It was actually kind of good to have a fresh set of eyes. He spent about 20min with me and then said he was going to leave and look over my file. About 20 min later my RD and the fellow came back in. They still don't really know what is causing this mess. I am only 1 week into the 30day cardic monitor. Obviously the RD wants those results. We still can't test for adreanal insufficiency due to the amount of steriods that I'm on. I have yet another Echo on Thursday-this time at home. He also wants a CT scan to check the pituitary gland. I have to go back down there Monday for an infusion and they scheduled the CT for when I'm done. He wants me to hold the pred. at 25mg. This I am NOT happy about. The dr. isn't either, but we gotta weigh the options. Definitely have the pred face going on and I'm tired of it. I've been on 15mg of mtx forever. Dr. wants to increase it to 17.5mg. Usually the liver enzymes tend to rise as we increase the Mtx, but dr. says we'll keep a close eye on it. Staying on the pred. and increaseing the Mtx will hopefully carry me over until the Orencia kicks in. I had the first dose last week so we have a while. Dr. said he really thinks after 3 months we should know if it's working. It can take up to 6 months to get a full response but dr. thinks we should know. He wants to move on to Actemra if there isn't much change. The eyes are already flaring with the steroid decrease-come on meds:Kick In! I see the pulmonologist in two weeks-hopefully we'll have some answers by then.
Made it home around 9:00. Long day... Nathan is spending the night at my parents' house. I'm excited since this means I get to sleep in a bit.
PT is calling the surgeon today. The decreasing of the pred is causing the left side to go nuts. The muscles are just twitching and going nuts, even under the eye. All we did at the pt today was to apply heat and she massaged the muscles of the shouldes and neck to try to loosen things up. Literally feel like my head is in a vise-sucks. I'm exhausted-can't sleep. I have a prescription for Valium for when the chest muscles get really bad. I took that last night and didn't really make a difference. I hate how you have to pick the lesser of two evils when it comes to meds. I love what pred does for me painwise and inflammation. Hate the pred face/weight gain and other side effects. Decrease the pred to solve the heart issue, but the inflammation is making my life miserable. OK...pity party done...
Awesome football game last night. Nathan said it was his best bday present ever!We are huge Virginia Tech fans. Last night they played Georgia Tech. Big game-ESPN was there. There were 66,000 people there and we somehow managed to sit behind a friend of his. Crazy! Yeah Hokies-another win!
Sorry to read about all the problems you are currently having. You're sure having a lot of confusing medical problems, but hopefully they will soon be sorted out and you can get some relief. Working with your type issues must be very, very difficult. I totally understand the desire to work - I kept my job and worked as much as possible during breast cancer but it was very, very hard due to fatigue, exhaustion from treatments, and many doctor appointments. I thought I was doing my co-workers a favor by trying to work as much as possible, in hindsight they would have probably been better to temporarily replace me with someone who could work 40 hours every week. Working helped me take my mind off my problems, but it also caused me a lot of stress. Maybe part-time work would be better for you.
Hang in there.
Part time work might be an option, but I would need health insurance.
Went to Duke to get my Orencia infusion. Pulse was high beforehand, but the dr. said Ok. Thank goodness-I did drive down 3hrs! Afterwards, my pulse contintued to be high. Up to 150 while just walking around. So, they admitted me. Fun...
One day later, and I'm still hanging out at Duke. Pulse is not dangerously high any longer, we just can't get it below the 110's. If things stay like they are, I can go home tomorrow. Obviously to many follow ups yet again.
Hospitalist has added a couple of meds-none really for the pulse issue but to help decrease the pred and still function. Pred was bumped back up to 30mg. Not sure how long I'll be stuck there. It seems my Calcium levels are very low-not a shocker after taking pred for close to 7yrs. So he added some sort of calcium med. Also wants me to take Bactrim(antibiotic) every other day. He is worried about my immune system so it's a preventative. He is going to test adrenal levels in the morning, but he doesn't think it will be a really reliable test. I'm still taking too many steriods. But he figured it's worth a shot.
I'll be on the cardiac monitor thru the night. Hopefully things will stay the same, or get better, and I'll be out of here. We still need to figure this mess out. As always, the quicker they can kick me out, the better. Way too many germs.
Becca,
When you say pulse, are you reffering to your heart beat? Seems terribly high. I still think of you often and still believe in a miracle for you and I am expecting it. You are so right about the hospital and germs. Of course tis the season for germs everywhere. Hope you get everything under control and get to go home. There is no place like home (except maybe at Mom's). Best wishes to you Becca. You are such a brave little soldier. You are going through so much.
LEV
Yep-heart beat.
Home sweet home. They discharged me around 11:00.
Still not sure what is going on. The Endocrinology team came in this morning. 5 drs all at once. Felt like a party! They were concerned with how low my adrenal function blood test was. But, the main dr feels that my adreanal system should rebound after being of steriods for a while. But, that's a long time coming. He did say to wear a medic alert bracelet at all times. Plus, if I'm sick(throwing up) for more than a day, I need to see the dr and get steriods thru an IV. I also need to check my blood sugar twice a day. It seems it was a bit erratic at the hospital so they want me to keep track of it. Steriods really mess with those levels.
Hospitalist was happy with those results, but frustrated that there really isn't an answer. He has a number of tests that he wants me to have done, but he wants them done outpatient. Once again-sooner you can get out of the hospital, the better. Monday was a long time ago! I have an appointment with my primary care tomorrow morning-7:30. He would really like some tests done tomorrow and this will allow time to maybe get some done. Really he wants me to have my primary care down there at Duke, but that's not an option. Pulse still running in the 110's. They said, even when asleep, it didn't go below 100. I just want this issue solved!
Who are you seeing at Duke? I have my second appt. there Monday. I have only been able to see a nurse practitioner and am wondering if I need to see an MD.Which dept? In rheumatology it's Dr. Keenan.Ain't it nice to get back home? I just came back from the hospital myself and you don't realize how much you miss stuff. Hang in there rocckyd- I can and do sympathize. =)Hey kids!
So, busy week as usual. Number of appts-some planned, some not so much.
Jaw: Still in the healing process. I know he said to allow a full year to see a real change, but I'm getting really impatient. That would be a year from the final surgery-so next August...really??? This past week I've had a ton of inflammation along the left side and the muscles feel AWFUL! When I'm in pain, I tend to get sick to my stomach. So, since Sunday night, I haven't really kept much down. Went to urgent care yesterday to get a steriod injection since I am totally steriod dependent at this point. Went back to the dr. again this morning for another injection. I have to go back Friday if still not much better and can expect to be admitted for IV steriods and Zofran. I've been able to keep some food down and Gatorade so I'm not dehydrated. But meds seem to be a bit too much for the stomach. My pain dr. upped the Fentanyl patch to 25mg since I can't throw that up. I didn't want him to up it any more than that. He is frustrated with insurance. He and the surgeon want to do Botox injections to release the muscles but insurance won't give approval. He and the surgeon are going to do a peer review with them next week. He's confident that they will approve it. My next appt. is Jan. 5th-hopefully for injections. I asked both the pain dr. and the surgeon if I am at a place they expected me to be right now or should I be better? They both feel that with RA you can't make a game plan. My opening is still wider than it was pre-surgery and certainly better than the 2-4mm(yes mm!) that I was projected to be without surgery. Both the docs feel that the real answer will need to come from the RD and finding the right meds to decrease the crazy inflammation. The jaw surgeon doesn't want me driving all the way there unless really necessary. 3hrs. in a car isn't much fun when you are sick to your stomach. He wants the PT to call him tomorrow and let him know what she sees/thinks. Really, unless there is an infection, there isn't too much he can do at this point. It's not fluid you can drain-it's the tissues themselves that are inflammed. The PT is helpful cause the ultrasound helps to break up the inflammation. If I have to go back to the dr. on Friday due to pain control he also wants a phone call.
Heart: Saw the cardiologist today. Mixed bag of results. I wore the Cardiac monitor for 30 days. It showed the heart rate to vary from 95-150bpm and skipped beats. But, no really irregular rhythms. So, that's good! Dr. feels that I have inflammation and is really annoyed that insurance denied the CT scan that the lung dr. requested. She thinks, at the least, I have subclinical pericarditis. Sub clinical meaning that it is not showing up on the echo. But, with the amount of steriods I'm on, she is not surprised. But the tachycardia and pressure are classic symptoms. She wants to put me on a beta blocker to control the pulse, but not until we figure out why I'm passing out. They lower your pressures, which won't help in this situation. I see the neurologist next week to see if they have an opinion. Cardio expects the neuro to bring in an endocrinologist as well. Mainly because my cortisol levels were so incredibly low when tested. When inpatient they did a blood draw in the morning. It came back 0.4. Yep-zero point four! Critically low. This is why it is so important for me not to miss my steriod dose and to wear a medic alert bracelet. Here are the "normal" results(cause really, whose normal?)
A cortisol test is done to measure the level of the hormone cortisol in the blood.
Normal
Normal results may vary from lab to lab.
Cortisol Adult
Morning 5–23 micrograms per deciliter (mcg/dL) or 138–635 nanomoles per liter (nmol/L)
Afternoon 3–13 mcg/dL or 83–359 nmol/L
I'm not going to lie-feeling pretty awful right now. I keep waiting for that morning when I'll wake up that the day will be better than the day before. Hoping the Orencia will kick in and prove to be the magic drug. I had the two loading doses and one regular dose. I go back on the 23rd and see the RD Jan. 10th. He'll make a decision then if he thinks it's working or we will switch to Actemra. He is hesitating due to the fact that he has had a few paitients have crazy complications with the Actemra. Everything is so out of whack right now-the Actemra could be the magic fix, or it could just shake things up even more. I've been on Orencia before-problem free.
So, there it is in a nutshell. Didn't really want to update since there isn't much good to say.
Please continue to pray for the safe return of Brittany Smith and for the students and staff of Glenvar Middle. I don't know if you have seen this on the news, but she is a 7th grader at school. Her mom was found dead Monday morning and she has not been heard from since. FBI spent the day at school yesterday interviewing kids. When you teach for a number of years, you know that you will lose kids-illnesses, accidents. But not this way. At my old school we had Morgan Harrington. Now this little girl at the new school. Just awful.
Kinda puts my problems in perspective....
Rebecca.. hope you find Orencia doing something soon!!
I had read about this little girl... and her situation..... I hope they find her soon.
the cortisol test.. I think I did that when I was first flaring.. does it involve a urine collection for 24 hours?
Thank you for the update. I hope the Orencia kicks in soon.
I have not been on for awhile because my laptop was on the blink. You are always in my thoughts and prayers.
Just bumping this back to the top - wondering if you are feeling any better yet?
Man-Girl,
I continue to keep you in my thoughts. It may seem like a long time to total recovery but it will soon come to pass and it will then seem to have been "not so bad". Hoping that the Orencia will help to lessen your problems. Keep the faith and continue to be the brave soldier that we know you are.
LEV
Thanks all..
Spent 5+hrs at the drs office yesterday getting fluids and steroids. Once the blood pressure lowered they decided I could go home. I have enough steriods/fluid in me for the weekend. They also gave me compazine(spelling?) to help with the crazy dizzy and upset stomach. It's just all the swelling right along the temple area.
Babs: the test they did was a blood test in the morning. They can't run more complete testing until I'm off the steriods to see if my own glands decide to kick in. Right now I'm in a dangerous situation since I'm entirely dependent on getting cortisol thru medication.
Thank God they found Brittany. Now she can attend her mother's funeral and begin the slow process of returning to a childhood.
I think this soldier is getting tired....
I hope the compazine helps you to get some sleep and gives you a bit of relief.
I am so happy that they found Brittny. I have not read anything on this story does anyone have a link?
Get well soon!
I got a huge packet in the mail from Social Security to fill out over the weekend. I think I did it all correctly. I hate all those questions, and I hate filing for disability. I know this sounds incredibly stupid, but I actually cried this morning when they had the school closings on the screen. I so miss it. I miss the kids and the energy of a middle school. i feel like I have lost a part of myself.
Jaw surgeon, PT, pain managment dr, and RD are all going back and forth this week to come up with an answer regarding the crazy inflammation/pain issue. It's like having the worlds longest migraine, sinus infection, ear ache, oh...and being beaten with a hammer all at the same time. It bites. One quick fix would be to up the pain meds, but I need to be able to function and take care of Nathan. Plus, it's the holidays! I missed Christmas last year due to surgery. The surgery was necessary-I know that. Shrinking down to a 4mm opening was not an option. That's to the point of a feeding tube. But, this is such a long recovery process. Throw in the other RA issues and it is just rotten.
I see the Neurologist tomorrow. Cardio wants to see if that is the reason as to why I'm passing out. I'll let you all know how it goes.
Hope you have a good day...and a warm one if possible. BBBBBRRRRRRR!!!!!!!!!!!!!
Dearest Becca,
I so very wish I could say something to bring you some comfort. You are so brave and courageous and are enduring more than most can not even imagine. I can read how you are trying to be so strong but can feel your deep pain and your thought of never ending trouble. I still expect a miracle and hope for it to be soon. I just feel so sad when I read of your sorrows. I'm not sure I could be so strong.
LEV
Thanks Lev...
I don't think it's so much being strong. It's more like I don't have any choice. Having my son helps. It's hard to give in when you have such a cool lttle guy depending on you!
I see the Neuro today. It's supposed to be a long appointment-not quite sure what he's going to do. I don't expect any real answers today. We'll see...
Well that appt. was a waste of time. The neurologist is convinced that I have some autonomic disorder. BUT...they can't test for that here. At least, according to him. He started spouting off referral areas...UVA, Medical College of VA...and so on. I mentioned that I go down to Duke and he said they can test down there. It seems true autonomic disorders are rather rare and a facility has to have enough patients to justify the equipment. Hmmm... He said he felt really bad pleading ignorance. But, he really wants to solve the problem. Don't we all? He told me to talk to my RD and see who he would reccomend and make the referral. If he doesn't know anybody, he said he would do some research. ARGH.
Used the last of the bread for lunch but there is no way I'm going to the store. Winter Storm Warning=All the Crazies at the supermarket.
First off, let me say a HUGE thank you for all your support and kind words this past year. I don't know how I could have gotten thru 2010 without you guys. I really mean that-thank you!
Pneumonia wise-things are ok. Still painful to take a deep breath, but I don't feel utterly drained like I did back in Aug. when I had to be admitted. Seems like the dr. picked the right antibiotic(which he was a bit concerned about) and we caught it early this time.
PT was concerned with how limited my opening was this morning. She called the surgeon who then called my pain dr. Pain dr. managed to fit me in. I can't thank him enough. They were closed 2 days last week for snow and with Christmas coming-they are already overbooked. First off, insurance is supposed to get back with him anyday regarding the botox injections. . . When he took my glasses off, you could see the indentation left from them along the temple. He was shocked at the ammount of inflammation and then even more surprised when he felt how taunt everything was. He called in the other practicing pain dr. to feel as well. Once again, it's always good to excell at something!
He asked how active and "with it" did I need to be these next few weeks. Then he laughed and said he forgot I had a 7yr old at Christmas time. He said the strentgh of muscle relaxer needed to even begin to loosen up the muscles would leave me in bed and unable to drive. Even then, he doesn't think the muscles will be able to be loosened using pills. Botox is the best hope there. I have been taking percocet 7.5/500mg and fentanyl 25mcg for pain control. Blood pressure was high for me, 157/94, so dr feels that more needs to be done pain management wise. I don't want to up the patch-really would rather decrease it. Instead, we switched the percocet to 15mg oxycodone. Hopefully this, combined with lots of ice and downtime, will keep things under control until the 5th.
Off to Duke tomorrow. That's the last real driving I'll have to do until Richmond on the 3rd. Looking forward to some quiet time...
rocckyd2010-12-21 18:20:27hope you have a safe trip, Rebecca.. and hope that some relief is found.
I have a question about the autonomic disorder...
do you have a peripheral neuropathy?
Not too bad, but yes. Mainly in my feet.... I didn't realize the extent until we started weaning the Neurontin. I had been on 1800mg a day, now down to 1200. I had gotten down to 900mg and the pins/needles feeling drove me crazy. I had been on it for so long, I had forgotten that feeling.Just wondering how you are doing? Wow you all have so much pain and suffering. I feel bad for every single one of you.
On a different note I would like to comment on the lists of meds and treatments you all are receiving. Thank you so much. Now I at least know what meds/treatments I should be on. What I worry about most is, what damage is going to be done to my hip replacement? Not so much the joint but the place where the metal rod goes into my thigh bone. Anyone know of the risks with that when you are not on any treatment? Thank you all again for all the good info.
Sharon
Happy Monday!
Busy last couple of days.
Saw the jaw surgeon last Tuesday. Not the best appointment. After looking at a CT scan, he feels the joint is in the perfect place. So-the question is:Why all the crazy inflammation on the left side? It looks pretty bad, and is very very painful. He is quick to admit that he expected me to be in a much better place at this point. I told him I was seeing my other main drs in the next few days, so he is going to call them this week. He still feels that it's a RA issue. Basically , inflammation in the tissues.
Pain management dr: plan was to get Botox injections to release the muscles on the left side. But, of course, insurance is saying no. Dr. is convinced he can get them to say yes. For now, he did two trigeminal nerve blocks. I go back in two weeks hopefully for Botox.
Saw the Rheumy at Duke today. He in also not happy. He feels that I'm in worse shape now than I was when I first started seeing him. Pulse and blood pressure were high once again. I told him I would rather not do a neuro consult(for possible autonimic issues) until we decrease the prednisone. I still feel that the pred is a main cause. He said that he was going to call the cardio and then get back to me on that issue. Meanwhile, back to trying to decrease the pred. Added plaquenil back to the mix and amitriptyline. My next appt. is in March. By then, I'll have been on the Orencia for 6months. He's obviously hoping to see some improvement by that point. If not, he said we will look at other options.
So 3 pretty negative appointments.
Also, as you guys know, I filed for disability. I had to file with the Virginia Retirement Services(VRS) and Social Security. Well, VRS responded and said no. Big surprise there. Obviously I'll start filing that appeal. Saturday I heard from Social Security and they said yes. This was the first time I applied so I was expecting a denial. Don't know if it's a ccmpliment or not that they denied me the first time round...
Is the nerve block helping any?
Glad you got at least a yes from someone. Probably it should make the appeal process easier with (VRS) scince you got a yes from Social Security. Well we hope so anyway.
I truely hope your Orencia kicks in soon. Like in five minutes would be nice. I know the Plaquinil takes time but hopefully it will help also.
Rebecca, sorry to read that things aren't going as well as hoped. Thank goodness your disability went through. Hopefully now the Va disability will go thru on the appeal. Wishing you better days ahead.Unfortunately, the VRS goes by their own rules. I thought that if SS said yes, then VRS would have to as well. That is not the case. Very few laywers take on a VRS case. They lose money. Remember, the only get paid if you win. But, I belong to the NEA(National Education Association). So, I am entitled to representation from a VEA(Virginia...) lawyer. I have a meeting next week with my union rep. and the lawyer. He is pretty much the only one who will fight the VRS. I have collected more documentation sine I last filed. My jaw surgeon added quite a bit. I have also been hospitalized twice since I last filed.
I started a new med called Atenolol. This is a Beta Blocker. Hopefully it will help with the blood pressure and crazy pulse rates. Pressure was once again 161/89 and pulse in the 140's. Still hoping that it is due to the pred and the adrenal insufficiency. Hopeully as we taper the med, the cardiac issues will resolve themselves. The cardiologist is ok putting of the neuro consult for now. Obviously if I go inpatient again, a neuro will be consulted. Cardio also wanted to add Colchicine to the mix but wants the Rheumy's opinion. It's another immunosuppresent and can really mess with the bone marrow. But, it is also used to treat pericarditis which I have had many times. Cardio feels that if it's not the pred, it would be constant inflammation around the heart. Even though my Echo was good this last time, she feels it can be subclinical. Who knows-right?
So-incredibly happy that SS was approved. That provides some income. Ready to fight the VRS. Sorting out the heart issues. Fighting insurance for the Botox for the jaw...Lots of stuff. I really truely am still morning the loss of teaching. I'm one of those strange people that loved her job. Not fair....
Had an endoscopy done today. Great good fun! Shocker-they found inflammation. Where aren't I inflammed? I see the dr in two weeks to allow time for biopsies to come back. GI also wants to talk to the rheumy.
They tried so hard not to access my port. It was done at an outpaitient center so not as equipped at a bigger center. I told them they could try as many times-I'm used to being a pin cushion. The dr and the nurses tried and tried but then had to use the port in the end.
Dr. said I had the worst veins he had seen in a patient under 80! Good to excell at something. On the positive, the beta blocker seems to be doing its job. Dr came in after the procedure to talk to me and said they took careful note of the pulse/pressures. Even during the procedure when I would be the most stressed, the pulse was never above 120. Yes! Since Aug my resting pulse rate hasn't been below 100.
Tomorrow I meet with the Virginia Education Association lawyer regarding VRS disability. Hopefully this appeal will go through. Lawyer is optomistic since SS came back so quickly. I applied the first week in Nov. and got approved the first week of Jan. 2 months-I don't know if I should take that as a compliment or not? As I've said, the VRS goes by their own guidelines, but I've gathered more paperwork and documentation to add to my huge pile.
Off to Duke on Wed. Good thing I got a new car last year. I'm certainly putting on the miles!
Sending good thoughts your way The lawyer visit went well. He said the VRS in turning down so many people due to the fact they have no money in the budget. Hmmm...they have the money they took out of my paycheck for the last 11yrs :) Anyway, he said that I have a pretty good shot at getting approved. Especially since SS said yes. SS is looking at all and any employment, VRS is just looking at teaching. Obviously, be able to talk for an extend period of time is necessary. So, I signed a ton of medical waivers so he can gather info. I also left my binder there with all my medical info so he can go over it. He said it won't be a quick process, but he thinks he'll get it done.
Yesterday's infusion went well. The nurses were excited due to the fact that my pulse and bp were in the normal range. Three cheers for the beta blocker! I feel like I'm 34 going on 80 with the artificial joints and the heart meds, but it works.
The jaw looks and feels awful. I'm literally sick to my stomach-pretty miserable. I see the pain management dr on Monday. Please oh please let insurance have said yes in regards to the Botox. please please please....
I have an appointment next Thursday with a lymphodema specialist. Usually these are used in cancer treatment when lymph nodes are affected and can't drain fluid properly. The surgeon is hoping that the inflammation is keeping fluid from draining properly and maybe this will help. I'll try anything...
rocckyd2011-01-20 18:20:16Had my first appointment with the lympodema specialist. For the first time, I'm one of the healthiest people in the waiting room. Most people there have some form of cancer.
She was really nice and knowledgable. Once she found out I taught biology, she started getting more technical. I do find all this fascinating. Anyway, she said that she could see the fluid moving around after she loosened everything up. She is only doing one side at a time due to how incredibly sensitive the whole face is.
I'm hoping this works. The swelling is awful. Right now the nerve under my left eye is super irritated. It keeps twitching, like when you drink too much caffiene. Saw the optho yesterday and I have a really bad case of keratitis in the eye. Fabulous.
Going to take my son to Monster Jam tonight. I really really hate Monster Trucks, but he loves them. It's worth it to see the look on his face. rocckyd2011-01-28 13:53:16I hope you took your ear plugs for the noise level in that place!! Been there, done that with my older sons... Not one of my favorite things! Hope it wasn't so bad..but to see your son's excitement.. priceless!!
So many innovative procedures! I hope they work for you..
BEST of luck with the VEA... my fingers are crossed!
Becca
I'm sill believing in some miracles for you in the near future. I keep you in my thoughts.
LEV
Hope you will soon get some relief. Pain from fluid swelling is horrible - went thru some of that when I was going thru my breast cancer treatments years ago. Hang in there - hopefully better days are ahead.((Hugs Roccky)) You know that I'm thinking of you. Monster Jam was crazy. Nathan had an awesome time. He was on the edge of his seat the whole time.
I had to laugh. They were selling cotten candy with a "free" Grave Digger foam hat included. How much was this cotten candy---. Gald it came with a free hat!
Now, on to today:
Ouch Ouch...triple Ouch!
Saw the pain management dr. today for the Botox injections. Thank goodness insurance finally came thru.
Fist off, love this dr. He has helped me out more than anyone. When I've been inpatient he has come to visit me after his clinic hours, even when he hasn't been consulted. I've cried to him more than anyone-even my own family.
So-he did 4 injections on each side. Yes, that would be 8 total-Yikes! He started behind the temple on each side and worked his way down toward my mouth. When he had me clench my jaw, he was shocked at how large the muscles were. This is one of those time when a developed muscle is not a good thing. Basically the are always taunt and in a constant spasm. The purpose of the botox is to weaken the muscles. It's a fine line-too little and it won't make a difference, to much and the muscles will be too weak to chew. He did one side first. I never say anything when I have painful procedures done. When I hurt-I'm very quiet. But, I couldn't help having tears. After round one the dr. stepped out to give me a break. When he came in for round two he said that this was one of the worst parts of his job. His goal is to prevent pain. I've known him for so long he said he felt as bad as he would if he was hurting his own daughter. Such a nice man. Round two was actually worse than the first part cause I knew what to expect. I didn't cry out, but still had tears. I wish I could stop them, but I can't help it.
So, I was told to go home and do nothing for 24hrs. Nice prescription. Basically, he just wants me to relax and allow the Botox to work its way into the muscles to work its magic. I'm not going to lie, this was a pretty awful appointment. I've had cortisone injections thru my ribs and sternum and I thought those were bad. The dr. gave me a huge hug afterwards and then told me he was so proud of how I've handled this whole situation. I thanked him, but really-I don't think I'm handling this well at all. Fist off, it's not like I have a choice. For whatever reason, I've been delt this hand. I feel like I've let people down since I've been on disabilitiy. I'm dreading the day someone asks what I do and I say I'm on disability. Right now, I say I'm on a medical leave. That answer will only work for so long. Right now I'm still on the school systems insurance. They are keeping me on until July. This is incredibly nice of them. Really, once awarded disability, they can drop me. Right now I pay 0 a month for employee +1. After July, I'll have to go on Cobra. That will be 3 dollars a month for the two of us. I won't be able to say I work for the county.
Really, I'm just so mad. I try to stay so upbeat. I joke, I laugh, I try to minimize the situation. But I can't get a break. My husband having an affair-that was rough. Becoming seperated when I was 14 weeks pregnant-not fun. Having Nathan 6 weeks early-scary. Major RA flares the entire pregnancy and afterwards-frustrating. Multiple failed RA meds-sucks. "Ground glass" and nodules on lung CT's-suprising. Percarditis, high blood pressure, and tachycardia, fainting-crazy. 2 stages to replace TMJ(one 6 hour operation, the other 9hrs)-well that bites(ha ha). Crazy veins resulting in the need of a port-a-cath-not expected. Now, I'm like some medical freak. I'm 34 going on 80(fake joints, heart medication).
Awarded social security disability after only 2 months-yay for having so much wrong even the government feels sorry for you.
Sorry for the pathetic post. Thanks for letting me vent. I do see a counselor, but he doesn't really get it like you guys do. I just want the life I had planned. It's not like I want much. I loved teaching middle school. And I was awesome at it. Not bragging, just the truth. I've been nominated for teacher of the year, I was department chair. I had been planning on going back to school to get my Masters. I miss riding horses, riding my bike, working out to the point the my legs would shake and I would be drenched in sweat. Sounds gross, but man did I feel good after the fact. Yes, water aerobics is a possibility, but it is sooo not the same.
Ok, I'm sitting here crying so I had better stop. Thanks again for letting me get this all out. I have great friends who have stood by me during all this mess. But, they don't live in our crazy RA world.
Hi Roccky, I can't imagine what you went through at the pain mngmt dr......I was