Face pain?

[onatreetop]

Just wondering if anyone had sinus, nose and forehead or eyesocket pain before the saddlenose showed up? I got the ct report from Thursday and the sinus' are normal. Did anyone notice? I called Maryland today and left a message to set the appointment. I am scared because of the pain.

[Jack]

Massive sinus pain before being diagnosed with Wegener's, but then susceptible to painful sinus infections for some years after that. Permanent antibiotics put a stop to the trouble.

[Sangye]

I'm glad you've got a call in to Johns Hopkins! (Heads up: The receptionist for the Vasulitis Center--Kim-- can be a little testy. Don't take it personally,she'll warm up to you.)

Meanwhile, gather all your records to submit them. I recommend you get a copy of everything for your own records. Really helps down the road. When you get copies of all radiology (CT, MRI, X-rays) on CD, make sure you also get the radiologist reports for them. They'll have their own radiologists read them, but they like to have the original reports for comparison. Everything you need to submit is on their website, which I'm sure you've already found.

[onatreetop]

The only thing for me to get is the notes from My RA. Got all the labs, rad. testing with reports. I am set. I told my mother I called today to and she seems very happy my husband had no comment. I still dont think he realizes how serious all of this is. All my close friends are worried and watchful. he is just kind of hanging back. stupidity is bliss they say. Going to look around for some old pain meds before I rip my face off. Just got back from trick or treat with the kids. What a warm night! 70 I was dry when we started by the time we were done I looked like I just got out of the shower. I was a sweaty vampire tonight. happy Halloween!!! And welcome November!

I have had my share of sinus infections but this one , even with the bactrum is a whooper!!!! It hurts all the way to the tip of my nose. It isnt just sinus this time.

[Sangye]

Family members are often in shock with a diagnosis like Wegs. And with you still working and taking care of kids, it makes it even easier for your husband to stay in denial. Weggies almost never look as sick as they are. Maybe if he spends a little time on here it'll help him. The group is for Weggies and people who love them, so he should feel comfortable to ask questions or just look around.

[onatreetop]

That would be helpful for sure. But to much work for him I am afraid. He doesn't do the computer thing. Yep thats right and he isnt the mechanical one either. I am all of the above. I will try to print somethings out for him to read. That is about all I can do really. My kids are more intune with me at this point. Oh well, love my hubby but I think we have been doing the split shift thing to long. You could say we are roommates with benefits schedule permiting of coarse. We see each other two or three nights a week.I get the kids out and going then I go to work while he is sleeping and he leaves before we get home. He is fininshed after midnight and sometimes not until 4am. So......................Thats the way things are working for now. Until I shut down anyway.

[jola57]

onatreetop, life is what it is and so your health is on the top op the "to do" pile.
This illness doesn't show up like others, we function, don't look "sick", muscle pain, joint pain, sinus pain, headaches, need I go on - none of these show to our loved ones. My family conveniently "forgets" about my illness so i simply stop doing house chores for a few days as a reminder. With children I know its hard but maybe a bed lye in at least on the weekend. There must be some time when your hubby is able to do the chores and take care of the kids. I have always been a "single parent" with my hubby's odd hours at the hospital so I can sympathise.

[onatreetop]

Thank you and yes I agree it is easy to appear well when you know you are going to finish something. I try to keep my mind set there most of the time.I WILL GET THIS DONE. Later in the evening when one of them reliezes I must be tired if I am laying on the cold kitchen floor to cool down, that I must be tired. I will take care of myself always have. My mother trys still to but with all her issues for her to worry about me seems a lot. I like her am hardheaded and want things done a certian way. I will only ask for help when there are no other options possible. Bad I no to selfcefficiant,etc. I am the rock in the core of our little insane planet that is the gravity and weather predictor for the rest of them. Now I am feeling sorry for myself. It is job security! Thats what is is! Going to have a tough day today. Have to clean the house my mother has rented for the winter.She moves in today. I will miss her hinding in the bedroom away from the noise and action. But knowing she was there to talk to whenever I needed to was nice. PLus I can check on her and make sure she woke up that day. Never know.

[Sangye]

You've got so much on your plate. Many of us seem to have arrived at a Wegs diagnosis being control-freaks, or at least people who didn't want to ask for help. I've had to become very flexible about how things are done. There are some things that are non-negotiable-- involving germs or putting things out of my reach, etc.... Everything else can change.

I'm concerned at how much energy you're expending with cleaning and taking care of everyone and everything. You really do need that energy for healing. Remember, the drugs are taking a silent toll that you won't feel for months. Both Wegs and the drugs can cause extreme fatigue. You want this initial treatment to work-- don't want a flare or to extend high dose pred, etc....

How old are your kids? It seems like they can be doing a lot for themselves. My parents were healthy, but my sister and I cooked dinner starting at age 12, cleaned the whole house every week (started younger), and did our own laundry (even ironing). We also helped mow lawns, etc... They can do these things.

[Jack]

The ironing used to be my job because I was at home, but my 13 year old daughter is now doing it. (she wants paying of course!). In fact, I'm doing very little at the moment and trying hard not to feel guilty about it. It does not come easy.

[Doug]

Yes, not feeling guilty because you have a disease that can kill you, frequently leaves you too weak to do simple things, and has no cure- yet. That sounds like too many of us! What Jack points out is very good to keep in mind. Stress can cause us problems, so pull your stress plug from time to time by treating yourself to a moment to rest (some point before you're found on the floor!) when you feel too tired to move.:) This echos Jolanta"s advice, too, to stage a mini-strike (without the picket signs if you can help it- this is your family afterall!) to remind your familiy that you don't just have a cold, that you don't need their sympathy, you need their understanding if they don't want to kill you. Well "kill you" might be a bit mellowdramatic. Or is it? Your body will send you the correct answer.

[Sangye]

I think we got an allowance for about a year once. It was just understood that everyone in the family chipped in to make it all run smoothly. We actually enjoyed making dinner every night. We were really creative and invented recipes or sometimes made surprise desserts. Neither of us loved to clean the house, but growing up in a military family you just don't make a stink about things like that. We split up the house between us each week and had to clean it first thing Saturday morning. Then the rest of the weekend was ours.

We also made our own breakfast, lunches for school, got ourselves up and out for school, etc... beginning in about 5th grade. We used to watch tv and see moms making breakfast for kids running out the door, or begging them to clean up or do their homework and think we were from a different planet. :D

[katwoman]

Just wondering if anyone had sinus, nose and forehead or eyesocket pain before the saddlenose showed up? I got the ct report from Thursday and the sinus' are normal. Did anyone notice? I called Maryland today and left a message to set the appointment. I am scared because of the pain.
I suffer from constant sinus and nose pain, which I am also on Bactrim and when infection takes over the dose goes up - doesn't seem like much of a solution - but the saddlenose just seemed to occur overtime, it just got more noticeable as the dip got deeper....
You guys are very lucky if you have access to John Hopkins Clinic, my sister promises if she wins lotto she is going to fly me over and get me and also the nose sorted!

[onatreetop]

I do get tired and then I go to sleep and let the laundry lay etc. The sink is full of dishes and the carpet needs vaccuming. So I can let things go for a time but then I can't stand it anymore. I agree that the kids need to do more. They have been sick with flu off and on too.
I do feel better when I keep up a more normal schedule and sleep like a baby the nights I do.
I am streching myself I do know that but...............my body tells me when I shouldn't do anymore. This week will be easier only three days of work. I am calling MD after 9 and kids are off to school. Hoping for a close appt. I am questioning my RA at the moment. The face pain is decreasing but still there. Joint pain is becoming worse and the weather is wet. I have started taking the pain meds more. Which I know isn't good but they help. I haven't ripped my nose off yet.
Yes I want this first round of treatment to work. Of coarse I do, I have to keep working to though. No disability or benefits of that nature. Lucky to have health insurance for me and the kids right now. The meds I can get samples I do the rest I get to pay for.
I forgot to tell you what the RA said last week. I asked him if the meds needed to be adjusted yet? He said they are working why would I change them? WHAT? I went into an anger raging shock. I couldn't speak and if I had I problably would have had the man pinned on the floor. So the call to JHU is going to be good. I left a message last week but I want to try and get a person this time. Wish me luck. If I have any I will be going on a road trip this week.

[Sangye]

I'm really glad you're calling JHU. Don't expect to get in this week, though. For new patients they take at least a week to review all your records. They go over them with a magnifying glass--Wegs rheumy, radiology, etc.... Dr Seo (don't know why it gets underlined on here) knew every detail of my very complicated case when I first saw him.

Especially since yours isn't immediately life-threatening right now, it might even be 6 wks to get in. When I moved from AZ to MD last year, I made the appt ahead of time to avoid lapses in care. I was in very bad shape but not at death's door, so it was a 6-week wait. The Wegs docs only see patients 1 day a week, leaving few open slots. Kim doesn't have any control over any of that. Take whatever day/time is offered and whatever you do, don't cancel it. Get there even if you're really sick that day. There is no wiggle room in the schedules--they see patients from all over the world. (Also, ask Kim for her email. She responds to it right away, instead of voicemail which can take days. Keep 'em short--she's super busy. Thank her profusely and she'll help you tons.)

Take what you need to survive the pain. Severe pain is a sign of active Wegs, so your doc is just plain wrong that everything is dandy. Fool. :cool:(The "anger raging shock" was definitely helped by the pred, though. Hard to see right now how much that drug inflames your emotions! I almost slugged a couple of my docs in the early days, too.) :o

[Jack]

The symptoms you describe sound very much like the flare ups I had in the early days. A quick switch to cyclophosphamide and more steroids used to bring it in check within a few days, but of course it takes its toll in the longer term.
I think that the trend these days is to treat more conservatively in the hope of avoiding the sort of problems that I have. I'm not so sure that this is such a good move.

[Sangye]

I don't think it's a matter of trading "heavy-duty and effective" for "milder and less effective" treatments. The research is showing that drugs like ctx not only create more problems during treatment and down the road, but that they're not necessarily more effective. It's more about timing and using the right tool.

In my current flare, if we'd waited for my blood indicators (inflammation) to rise I would have had to go back on 80 mg pred and spend a year tapering. Instead, my doc caught it earlier and we could treat it with much lower doses. And now we know my particular signs of a flare and can catch it way earlier if it happens again.

One of the biggest problems with the "hit it hard" approach has been that it kills too many people. I seem to remember my Wegs doc saying infections and cancer kill more Weggies than Wegener's. Yes, cancer is down the road, but infections are here and now.

[Jack]

Hi Sangye. :)

As you can imagine, I know the risks involved, its just that this approach worked for me and enabled me to raise a family and hold down a good job so I suppose I wave the flag a bit. ;)

I must admit that my docs were getting a bit twitchy about it and it was a good thing that I reached some sort of remision before I needed to go through the heavy duty treatment again.

[Sangye]

LOL-- Picturing your doctors twitching.... I'm remembering an old Pink Panther movie, where Clouseau's boss goes crazy and has twitching attacks.

I'm glad it worked for you as well. This forum wouldn't be the same without you. :)

[BARON]

Hi as you say D just made tea now fast asleep you just have to go with what your body says there's no such thing as must get it done now as they say there's always another day it drives her mad when i say it but it takes the stress out of what she thinks she should be able to achieve in one go as i say to her chill now got the doctor saying to her as your husband says chill .I know its hard but taking it easier when your body tells you to dose seem to help Moore so now with the chemo take a lot Moore out of her, when they said its in your kidneys her reply was oh well it not in my lungs this thing will not beat her she will fight it all the way I must admit I'm not the most domestic one but am learning new skills never new a cooker had so many knobs or a washer so many programs it makes her laugh and says I'm becoming a domestic engineer

[Sangye]

Baron, how's your wife feeling these days? Any improvement? What meds is she on?

[BARON]

Hi Sangye not to bad new med knocking her a bit she's just gone onto cyclophosphamide 150mg a day there hoping this will kick in or the next step is Intervenes the new drugs are making her Moore tired but as you know she is the human Dynamo so it takes a lot for her to stop Hope your ok as i tend to say just life's little changes.This fur-am rally dose help to understand all the twists and turns this disease can bring just as you think your getting there another twist comes it's like snakes and ladders but as they say it's a game we will win in the end. By the way I'm looking for a double six ha ha take care wishing you and every one from the bottom of my hart x

[onatreetop]

I talked to Kim today at JHU. She was brief and to the point. She gave me a fax number to send records too. I asked about cds and films and she said sure for the past year would be good. It will take six weeks from the time they get everything. i was worried about the referal but she said we can worry about that after we schedule the appointment. So......I have one last record to get the RA's.
Got kidnapped today by a friend. Just for a few hours but we had a blast at the casino. Haven't been in in over 6 monthes. I played on twenty five dollars for three hours. Fun distraction.

[Doug]

Good for you both! Things coming together medically, and a happy time with a friend! Counting blessings, anyone? I highly recommend it because they help you deal with times you feel alone in the universe.

[onatreetop]

Yes, yes and yes. I am counting the blessings everyday. I am usually very happy to wake up and be able to move about most days. Hey, how much cat food are your kitties going through? I just bought another twenty-one pounds. I hope it lasts two weeks? The deposit box has to be cleaned twice a day. I bought dog bowls, 2, one for food holds 4 cups, one for water.
It is the little joys that remind me that I will make it through the day.

[Doug]

Now I am scared! I did laugh, though, that one of the cats pooped right in the rake I forgot to remove after scooping. Who (not I) would guess cats can rival an adult elephant in the amount of poop they make a day? It's still too soon to do comparisons of litterbox production, though I'm working on the suspicion that once a day isn't enough. Haven't gagged yet. :rolleyes:

[jola57]

I am so glad my boys are all grown up and my animals are outdoors trained:D

[onatreetop]

I believe that I have high-test kitties. They are like shoting arrows, darting through the house and running on the walls. We love them so. Just gave out the morning love to the 4. Now they are trying to wake up the kids for me. The kitty poucne in the morning is to funny to watch. The slightist twitch and that body gets loving attacked!!!
I have a feeling to today will be a good day.Hope all of yours will be too.

The poop scoop thing was really funny. I think they are a step ahead of you or giving you a hint?

[Doug]

The poop scoop thing was a warning, I think. "Next time it's the floor if you don't take care of this buildup in out litterbox....) Dun-dun-dun! It was the bigger one, now known as Ginger who did it. I recognized the magnitude of it! Ha! In four days, two cats nearly filled up a gallon-sized Zip-Lok bag with clumps of urine and poop. Anyone searching through my trash for personal information so they can steal my identity may reconsider!:):p

[onatreetop]

My trash too.Imagine 4 of those kitties clumping and dumping!! I can fill a shopping bag half way in half a day. Holy pee balls and poop!! That does make the trash a little more untouchable. One of the couples I work for have one cat and two litterboxes side by side, one for pee the other for poop. Oh if they have anything in them when its time to go again the cat goes somewhere else, stairs hallway etc. Talk about picky! What a brat. It would never survive at my house. 4 kitties one box!:eek: