Sad Panda

[NikkiNicole]

The process of trying to get on better meds is really getting me down. My doctors never have appointments that I can squeeze in between shifts at work and then, I get one, and an emergency happens at work and I can't go. Such is the life of a 911 operator/Sheriff Dispatcher. I'm calling to make another ENT appt for next week because this week is a wash. We are so short staffed with sick calls and already being short on bodies that there is no way I can get in.
I went to the ENT a few weeks back and he insisted that my dizzy spells were just migraine related. Hilarious since I don't get migraines. I was prescribed medications and my rheumy said "Just give them a try so we can see if it works" well ... the medication made me even dizzier. I opened the little pamphlet and read the information and the first most common side effect of said migraine medication was dizzy spells. Hmmm, how was this supposed to help my dizzy spells again? So I emailed my rheumy and said "I can't take this! It's making things worse!" and she called over to ENT and told him he needs to see me and look into my Wegener's issues (i.e. swelling in my sinuses). Obviously, there's swelling. There's massive amounts of pain ... and my face feels full. Yes, I am not congested but every time my rheumy has peeked up my nose she says it's inflamed.
I have to see him in order for her to proceed with a switch of medications to something a bit more heavy hitting, like RTX. I understand this because of the toxicity. I am not presenting with life threatening symptoms, I get that. I understand that there needs to be a justification to put me on something so toxic. Yet, at the very same time, I am getting completely frustrated and want to feel normal.

I am fighting a cold, which is something that came on after I went to the ENT the first time. It's an awful one and ust when I felt it was going away, I started to feel a bit awful all over again. Everyone at work is horribly sick ... so I am sure if I get over it, I'm just going to get it right back!!!

I'm just sad. I'm sad that this continues to make me feel like ass. Pardon my French. :blushing:

[annekat]

Rats. I'm sorry that your plans for dealing with your WG and related symptoms are not falling into place. I keep reading more about dizziness and there are so many possible causes, but I have run across statements linking WG to a greater likelihood of having it. I get tired of hearing about docs who just pick a cause out of a hat rather than go to the work of really investigating what might be going on. I hope it gets better, the people at work get well, etc.... And it's easy for me to say not to worry about the toxicity of RTX, since I'm not taking it, but there have been so many on here who have done so without issue and gotten better as a result, and ALL of our meds carry risks.... so I think maybe your rheumy is being little too cautious........ Best of luck in getting things going in a better direction.

[Birdie]

I went to the ENT a few weeks back and he insisted that my dizzy spells were just migraine related. Hilarious since I don't get migraines. I was prescribed medications and my rheumy said "Just give them a try so we can see if it works" well ... the medication made me even dizzier. I opened the little pamphlet and read the information and the first most common side effect of said migraine medication was dizzy spells. Hmmm, how was this supposed to help my dizzy spells again?

I'm just sad. I'm sad that this continues to make me feel like ass. Pardon my French. :blushing:

When first diagnosed I went through doctors with listening disorders faster than a bartender washes shot glasses. If I didn't get a good initial exam, I didn't go back. The doctors I kept impressed me immediately and kept doing so as long as I had insurance.

What does "ass" mean in french?

[Birdie]

I get tired of hearing about docs who just pick a cause out of a hat

I had an ENT walk into the exam room with a prescription in hand. Never laid eyes on me before, didn't ask a single question, didn't look up my nose, nutin. Explained the treatment for a Wegener's patient in a couple seconds and then walked out. What do you suppose the odds are that I either filled the prescription, or made a second appointment? He looked good compared to the first urologist.

[NikkiNicole]

I'm hoping to get in next week and have him actually stick the tube up my nose ... not that its pleasant but at least he will actually be looking instead of just assuming. I swear, the ENT appts make me feel like the biggest hypochondriac in the world. The ENT docs and certain ER docs. It's got to the point where I might not go to the ER when I should because I don't want to be talked to the way that they do when I am there. You know what I mean??

[MikeG-2012]

I had an ENT walk into the exam room with a prescription in hand. Never laid eyes on me before, didn't ask a single question, didn't look up my nose, nutin. Explained the treatment for a Wegener's patient in a couple seconds and then walked out. What do you suppose the odds are that I either filled the prescription, or made a second appointment? He looked good compared to the first urologist.

BZZT! Wrong answer doc! TIME TO FIND ANOTHER ONE!!!

Honestly, I don't know why anyone would continue to go to an ENT that is not taking the Wegeners in his/her patients seriously. If I had an ENT that never looked in my at every visit, I'd be shopping for one that would!

I am so blessed to have a great ENT, and he and I have become "battle buddies" (his words) over the past three years. Here's his profile page: Dr. Anthony Rogerson (https://www.monroeclinic.org/rogerson)

[Birdie]

It's got to the point where I might not go to the ER when I should because I don't want to be talked to the way that they do when I am there. You know what I mean??

Yes Nikki, we ALL know what you mean. Some doctors are obviously bad. Sometimes it's the system that makes them unable to do good. Your job is to figure out which group each doctor fits into. If it's the system then you can speak up, be forceful enough to wake them up and actually get health care. If it's the doctor then it's your job to run away from them and find a good one.

Regardless of all other factors, ASK to have a sinus swab & culture done. If they haven't done it and you've had constant sinus issues, then it's way past time to find out if you've got stuff growing in there. I went six months and only got it done by yelling at the ER doctor. A fever of 105 wasn't enough. Snot like string cheese a foot long wasn't enough. Just being in the ER for the seventh time with the same issue wasn't enough. The system, and many doctors, are asleep at the wheel, just going through the motions like flipping burgers at McDonalds. They forget that the customer ordered no tomato, all burgers get tomato.

I keep getting the feeling from you that maybe... you're a little bit quiet & timid? That's very nice and sweet in a social situation. But damn.... your health care is not a social event. Get loud! Tell the doctor you're part of the equation and they have to listen to you. You MUST be heard to get care. No doctor can properly treat you without hearing your symptoms (actually listening) as well as hearing about their own blunders (Migrane Nikki?).

Now... I think you're not dizzy enough so you may want to take your migrane medication. See, even I can be a doctor. :) :) :)

Bug hugs,
Gary

[Birdie]

I am so blessed to have a great ENT

You're lucky. I didn't find a good one. Instead I opted for the option of not having any more serious sinus issues. I reccomend it, much easier to deal with. :)

[Alysia]

Dear Nikki. I am sorry. it is too much pain for too long. I think that you also need to ask for CT of the sinuses. they can see the inflammation in it more clearly. sending my prayers.

[whatthewhat]

Forgive my bossiness...Imma 'bout to go all mom on you... But, YOU have a right to call in sick. You ARE sick. You have a very serious disease that can steal important things from you like hearing (and it would be hard to work as a dispatcher then) or kidney function (and making time for dialysis appointments is not any easier than ENT appointments).

I believe my daughter has "little" symptoms that tell of major things on the horizon. For her, one "canary in the coal mine" is her skin. Tiny little sores, that the first time, pre-diagnosis, I and the pediatrician just wrote off as teen blemishes (although she doesn't get them.) The second time, before her flare last fall, the dermatologist saw it right off the bat and then biopsied to confirm - even the experienced rheumy pooh-poohed the derm, but within a month our girl was in the hospital fighting to save her kidneys. I think the dermatologist is a crucial member of my daughter's medical team, even though the skin is not as vital an organ as her lungs or kidneys. Your sinus issues might be like that.

I think I'm fortunate to have spent a couple dozen years around twelve-step meetings listening to how a disease can be progressive, silent, waiting. I think in fighting WG offensive positions are key, because sometimes when patients realize it's on the move it has already gained too much ground. :-(

[Debbie C]

OH NIKKI...... All I can do is agree with everyone else.I am SURE that the problems you are having are a lot worse than those calling off sick. It is not your job to worry about be short handed...tell them to hire more people and take the time off that you desperately need and get the help you need. I wish I was there to give you a hug ( and get out of this damn cold weather also !!!! ) I know my sinuses have been bad lately and that has caused me to be very dizzy to the point I thought I was going down for the count but I have just been taking Tylenol. I had to take my mother to 2 different drs this week and she has a habit of telling them what I have and their response is "Never heard of it" ,I just say it doesn't surprise me. I have taken 2 garbage bags filled with pills prescribed and never took and turned them in to the police station. They just give you something to shut you up,get you out the door and on to the next person. Did you ever try looking in the VF website to see if there are better docs near you ? I REALLY hope you feel better soon. Lets us know what happens at your next appt.:hug2:

[annekat]

"Never heard of it" That response makes me so angry, whether from a doc, nurse, or anyone in the general public..... It is just SO dismissive, and the tone of voice is usually "end of subject". It's almost never, "well, I've never heard of that.... I wonder why, and guess I need to find out more about it." It's more like, "if I haven't heard of it, it must be nothing".... in one ear and out the other. AARG! I doubt there is any one of us here on the forum who has not heard this and I wonder if anyone has any smart retorts. If there are enough of them, I guess we could start a thread..... The best one I can come up with at this moment is "well, I guess there are a lot of things you haven't heard of...."

[Birdie]

Tiny little sores, that the first time, pre-diagnosis, I and the pediatrician just wrote off as teen blemishes (although she doesn't get them.) The second time, before her flare last fall, the dermatologist saw it right off the bat and then biopsied to confirm

When you say the biopsy confirmed, do you mean the tissue in those sores contained granuloma?

[Birdie]

I doubt there is any one of us here on the forum who has not heard this and I wonder if anyone has any smart retorts. If there are enough of them, I guess we could start a thread..... The best one I can come up with at this moment is "well, I guess there are a lot of things you haven't heard of...."

My reply to that attitude is simple and to the point: "It's terminal without GOOD health care."

[annekat]

My reply to that attitude is simple and to the point: "It's terminal without GOOD health care." Good one.... I'm afraid some of them are so dense that even THAT would go in one ear and out the other. If so, to hell with 'em.

[whatthewhat]

When you say the biopsy confirmed, do you mean the tissue in those sores contained granuloma?
Yes, in the hospital at diagnosis she had a skin biopsy. At last fall's flare she had another biopsy, and "granulomous activity" was found, as the derm predicted on seeing it. The derm called the rheumy actually, before calling us; rheumy pooh-poohed it, but thankfully the derm called us too and kept the fire lit under us to keep suspecting the beast was on the prowl. :-/

[mishb]

I just wrote an entire Mum rant to you, and my internet dropped out and I lost it all ......arggh


Basically, I was sticking up for you.
I don't pretend to know about your health system over there, but I do know that it is not as easy as finding another doctor/specialist, for you, because of the health care that you are in - I hope that is right :unsure:

I also know (from experience because I do the same) that you need to take time off work when you are sick.
The four walls that you work within, don't care that you are sick and you don't owe your life to those four walls.
The alternative to not getting care when you are sick, and not taking a day, a week, a month off work, is not an alternative that anyone of us want to think about :crying:
Please don't play around with your life because you have to live it for 50/60 more years or so, which is a very valuable reason for looking after number one, this is also what your co-workers are doing better than you.
Gary is right, they need to be able to cope (they can cope) without you there. Gosh it took me a long time to realize this myself. A long time to realize that they weren't going to fall apart and also that those who I thought just wouldn't cut it without me being at work - did
It now makes it easier for me to take time if I need too.

Gary also said that maybe you are a little bit quiet and timid, to tell your doctor to listen to you (yes Gary, this is me), but remember how this is your life and your body, and you plan to be in it for 50/60 years, well, you need to ask your ENT if he can have a look up your nose, or do a CT scan, just so that you know where things are at.
If you can't ask, please take someone with you that can. PLEASE :sad:

I did have a bit more to say in my other message, before it disappeared, but I will end this one here so that my internet doesn't kill it again.

Big bug hugs to you (thanks Gary :biggrin1:)

[Debbie C]

What a good "mum " Michelle !

[Tanya]

I totally understand feeling like a hypochondriac! There are so many little symptoms that go along with WG that I feel like I'm just complaining. I have no idea which ones are actually important for the docs to know.

[Birdie]

I have no idea which ones are actually important for the docs to know.

I figure any new symptoms are a high priority. I also research side effects and balance that list against my symptoms. Try not to bore a doctor with less significant symptoms when I know the cause.