Each time, the frustration gets worse

[NikkiNicole]

Hello again everyone,
I come to you on Day 10 of feeling like I was run over by a truck. I've been feeling off for awhile. I've had a sore throat for over a month now but ... on April 25th, things felt very bad. I had to call in sick for my Sunday April 26th shift because I felt so awful. I drug myself to work on the 27th because there was a stress debriefing for a critical incident I was a part of that I really wanted to go to. I lasted hour at work before having to go home. I was coughing non stop, my chest and back hurt every time I coughed and hurt afterwards. Called the Kaiser advice line and got a phone appointment with a really cool doctor who actually seemed to know Weg's. She told me to go pick up some antibiotics and tessalon pearls immediately to try and get on this. If I wasn't any better in two days I was to call my regular doctor and ask for a chest x-ray and a CT scan.
Fast forward to two days later, now ... I am in agony in my sinuses. My nose felt like someone was repeatedly yanking a wire brush through it and I thought my eyes were going to pop out of my head and my ears were going to go deaf. I called to get an appointment with my regular doctor (GP not rheumy) and was told she had no available appointments but there was a spot open with a Nurse Practitioner. I was desperate. I'd missed all week of work. So Thursday morning I went to see her.
That was a horrible experience. She kept skipping right over my disease. I kept telling her that this was exactly how I felt at the beginning of my diagnosis with Wegener's and that I wanted a CT of my sinuses and a chest x-ray. She kept explaining how the flu was bad and they didn't do those tests for sinus infections. She would order me a new antibiotic and a steroid nasal spray. I told her absolutely not. The nasal sprays make my sinuses hurt worse. I couldn't even do a sinus rinse without being in agony. Guess what was waiting at the pharmacy when I picked it up? Yep. A nasal spray. (It's still in the box)
I went back to work Friday, not feeling 100% but OK. Saturday I was at work again and about 10am ... things started to go south again. I felt awful. I was fighting really hard to stay at work and managed to make it til 5. We had plans to meet with friends for dinner and I really wanted to see my friends after being cooped up for so long.
On the drive down to see them, I started coughing like crazy again and my chest lit up like someone set fire to them deep inside. I literally sat up and felt the seat because my back was roasting. My seat was cold. I felt heat in every part of my chest, front/back/left and right. Awful. We made it through dinner but then ... as we were walking back to the car ... I realized it was hard to breathe. Like, I could breathe, but man it was hard. I was winded. This isn't normal.
I was still coughing and having a hard time. Dan told me to call the Kaiser Advice Line and they told me I needed to go to the ER so ... off we went.
Once again, it wasn't a pleasant ER experience. I felt like I was being brushed off again. I didn't get a breathing treatment, no oxygen. I was left there in a room coughing and in pain. The ER doc said he ordered a chest x-ray and I had to wait for that. I did it and .... everything was clear. I was given a steroidal inhaler that I can only use 3x day.
So ... he basically said "bronchitis" and referred me back to my GP. I said ... "No."
So ... now I have a phone appointment with a pulmonologist tomorrow and I emailed and called my rheumy who I had also contacted last week and was told to ride this out til Monday and then let her know. Well ... I"M NOT DOING ANY BETTER.
I feel like I am wearing a corset. I can't breathe that great. I get winded when I talk, I am light headed like I am not getting enough air. I'm weak. My chest BURNS. I just feel like I am being brushed off by everyone when I know there is something not right at all. This is terrible and a little scary.
I know my Wegener's symptoms were never all that bad. I know this ... I'm not afraid of dying but ... I feel terrible and NO ONE SEEMS TO WANT TO HELP ME!!!!!!!!!!!!!!!!!!!!!!

Anyway, that's my update.
I hate my life. I hate everything about my life right now.

[whatthewhat]

I am so sorry. I'm here, listening and believing you. you must be exhausted.

[whatthewhat]

I think I just posted on your author page on FB that you're still inspiring me, no matter your page output. But when I wrote that I didn't understand the depth of your despair :-(

[NikkiNicole]

Thanks. I am exhausted. I am sitting here at work feeling like I can't breathe. I have made so many itty bitty mistakes. Not in my job ... no ... I'm always on top of that. But I sent out an email asking to get some hours covered on March 15,16 and 17. Yea .. I meant May. I even wrote them down on the sheet to let people sign up as March.
I also kept saying the wrong thing when talking to my co-worker.
I don't know what to do and I feel very alone.
I started crying in the ER becausae I feel like a burden. I don't want to be in this life anymore.

[whatthewhat]

Truly, just hang on. Kaiser has the run-around but that doesn't mean you don't deserve expert care and it doesn't mean you will never get it, either. Tonight you're tired and sad and despairing, and it's a full moon to boot. I hope you have a simple self-care gesture you can use? I think posting on the forum is a great and strong act. Acting on the reality you're not alone and that there are others in this fight...and letting yourself be real also. ((Hugs)) from SoCal.

[Rini]

Thanks. I am exhausted. I am sitting here at work feeling like I can't breathe. I have made so many itty bitty mistakes. Not in my job ... no ... I'm always on top of that. But I sent out an email asking to get some hours covered on March 15,16 and 17. Yea .. I meant May. I even wrote them down on the sheet to let people sign up as March.
I also kept saying the wrong thing when talking to my co-worker.
I don't know what to do and I feel very alone.
I started crying in the ER becausae I feel like a burden. I don't want to be in this life anymore.

This will pass........the other side is worth it but still a bit away. The raw feeling and crying is enough to make anyone unstable. I tried to do college in such a state. It is so impossible to learn new information when at this point of recovery. when this happened I found that my chemistry was so mixed from all the drugs I had to break down and find a doctor to give me drugs for my head. I already had 3 for one tear duct and had seen far more for many other things. Zoloft has some interesting properties to help with the perpetual aching pain all over. The good news is this is what contrast is made of and the good part is about to be so much more worth it.

[Rini]

Hello again everyone,
I come to you on Day 10 of feeling like I was run over by a truck. I've been feeling off for awhile. I've had a sore throat for over a month now but ... on April 25th, things felt very bad. I had to call in sick for my Sunday April 26th shift because I felt so awful. I drug myself to work on the 27th because there was a stress debriefing for a critical incident I was a part of that I really wanted to go to. I lasted hour at work before having to go home. I was coughing non stop, my chest and back hurt every time I coughed and hurt afterwards. Called the Kaiser advice line and got a phone appointment with a really cool doctor who actually seemed to know Weg's. She told me to go pick up some antibiotics and tessalon pearls immediately to try and get on this. If I wasn't any better in two days I was to call my regular doctor and ask for a chest x-ray and a CT scan.
Fast forward to two days later, now ... I am in agony in my sinuses. My nose felt like someone was repeatedly yanking a wire brush through it and I thought my eyes were going to pop out of my head and my ears were going to go deaf. I called to get an appointment with my regular doctor (GP not rheumy) and was told she had no available appointments but there was a spot open with a Nurse Practitioner. I was desperate. I'd missed all week of work. So Thursday morning I went to see her.
That was a horrible experience. She kept skipping right over my disease. I kept telling her that this was exactly how I felt at the beginning of my diagnosis with Wegener's and that I wanted a CT of my sinuses and a chest x-ray. She kept explaining how the flu was bad and they didn't do those tests for sinus infections. She would order me a new antibiotic and a steroid nasal spray. I told her absolutely not. The nasal sprays make my sinuses hurt worse. I couldn't even do a sinus rinse without being in agony. Guess what was waiting at the pharmacy when I picked it up? Yep. A nasal spray. (It's still in the box)
I went back to work Friday, not feeling 100% but OK. Saturday I was at work again and about 10am ... things started to go south again. I felt awful. I was fighting really hard to stay at work and managed to make it til 5. We had plans to meet with friends for dinner and I really wanted to see my friends after being cooped up for so long.
On the drive down to see them, I started coughing like crazy again and my chest lit up like someone set fire to them deep inside. I literally sat up and felt the seat because my back was roasting. My seat was cold. I felt heat in every part of my chest, front/back/left and right. Awful. We made it through dinner but then ... as we were walking back to the car ... I realized it was hard to breathe. Like, I could breathe, but man it was hard. I was winded. This isn't normal.
I was still coughing and having a hard time. Dan told me to call the Kaiser Advice Line and they told me I needed to go to the ER so ... off we went.
Once again, it wasn't a pleasant ER experience. I felt like I was being brushed off again. I didn't get a breathing treatment, no oxygen. I was left there in a room coughing and in pain. The ER doc said he ordered a chest x-ray and I had to wait for that. I did it and .... everything was clear. I was given a steroidal inhaler that I can only use 3x day.
So ... he basically said "bronchitis" and referred me back to my GP. I said ... "No."
So ... now I have a phone appointment with a pulmonologist tomorrow and I emailed and called my rheumy who I had also contacted last week and was told to ride this out til Monday and then let her know. Well ... I"M NOT DOING ANY BETTER.
I feel like I am wearing a corset. I can't breathe that great. I get winded when I talk, I am light headed like I am not getting enough air. I'm weak. My chest BURNS. I just feel like I am being brushed off by everyone when I know there is something not right at all. This is terrible and a little scary.
I know my Wegener's symptoms were never all that bad. I know this ... I'm not afraid of dying but ... I feel terrible and NO ONE SEEMS TO WANT TO HELP ME!!!!!!!!!!!!!!!!!!!!!!

Anyway, that's my update.
I hate my life. I hate everything about my life right now.

I ended up developing asthma after I healed. It took 3+ lung doctors referrals to find someone I was willing to go back to. I got tired of everyone seeing that i am 23 and insisting i got knocked up. I literally start conversations with new doctors by insisting they test me while im in the office just so we can get past their stigma to the real problems. Trust yourself and your experience and don't go back to people who wast your time.

[Alysia]

Dear Nikki,
I am so sorry for your agony. it is too much. it seems like wg activity to me. when can you see your wg doc ? and asap ? what meds are you on ?
I an not sure if this is what you should do, just telling, in the beginning of my wg, when the docs didn't believe me, I just took pred on my own, 30-20-10 mg for my ears and joints. otherwise I couldn't stand it.
If dr. Phil would have being here now, he would have tell you to go and see wg-expert asap. and he would have also saying sweet things to sheer you up.
I will ask him in my heart to help you from above.
Hang in there. sending prayers and hugs. we all love you and care for you.

[annekat]

Nikki, it is just sickening that you keep getting brushed off with the symptoms you have. I can't understand it and wish you could be with another health plan. I know that is probably not possible, and who knows if another one would be any better. It just makes no sense.

You could have bronchitis, pneumonia, a Wegs flare, a sinus and ear infection, or all of the above at once! You need something big that will start knocking it out fast. You might have to take meds you don't want to take. You are familiar with all the meds, so I won't mention most of them by name. If they have not tried RTX, they need to try it and are being irresponsible by not doing so. But it might take some time to work, so you still need some big stuff that will work fast. This could be big-gun antibiotics as well as some of the heavy hitting WG meds.

Your misery and frustration is understandable and I hope someone will pay attention soon and take some significant action on your behalf. Most of all, I just want you to feel better, but that may not happen without medical professionals getting their heads out of the sand and actually taking care of you. Good luck, and I pray, in my way, for your recovery, soon, from this nightmare.

[MikeG-2012]

I think I would go sit in the Rheumy's office and tell them that you are not leaving until someone sees you. Maybe, if you are sitting there coughing on all their other patients, you'll get noticed and then get to see someone.

PLEASE DO NOT LET THIS GO!!! You need to be seen, and PLEASE do any and every thing in your power to get in to see a Doc that will treat the WEGENERS!

If I were a betting man, I would put money on the fact that you are probably in the middle of a big flare up right now. This is how I felt almost a year ago and it was a massive flare up!

Be a bulldog and get after your Wegs docs and DEMAND TO BE SEEN--IMMEDIATELY!! PLEASE?!?!

We all hurt for you and need you to feel better!

[Pete]

I agree with Anne and Mike. Get to your rheumy right away, and don't leave until they really diagnose the problem...

Good luck!

[Geoff]

HI Nikki, please be good to yourself and put yourself FIRST! work and socialising come second when dealing with this disease. I dont understand the medical way of things in your country but struggle to comprehend how you can be left in the lurch like this. OK your chest scan came back clear, good news there but even if its flu/bronchitis then you must rest.
I have learnt that taking to my bed is the best start. Keep strong and look after yourself.

[morningsunshine]

I don't know you, but I wish I could reach through the screen and give you a hug! It sounds like you're going through a rough time. I hope that you soon find someone who listens to you and takes your symptoms seriously. In the meantime, we're here for you!

:hug2:

[annekat]

You said you had a chest xray and it was clear. But a CT scan would show much more. At my dx, the xray didn't show enough and the CT scan showed everything. So I hope your rheumy will order one as soon as you can see her. I think if the ER had been doing their job, they would have ordered one then and there instead of trying to pass it off on someone else.

We all think it sounds like Wegs, but it could also be some dangerous infections or the flu, which must be treated. They should be able to take culture samples to see if it is any of those things. And of course, you need to have your blood looked at for WG and anything else that could be an issue, if you haven't just recently done that. Best wishes to you.

[NikkiNicole]

Thanks everyone. This is why I absolutely love and adore this forum. I felt so alone and perhaps, a little crazy. But then, I see all these wonderful remarks and I am reminded that I am not alone. Not at all. I have all of you.

I spoke briefly via email with my rheumy today. She wants me to change my diet again. I've been meaning to do this but have been very lazy about it. It's just easier to eat what's put in front of me. She also said she hoped that I was off work still. I told her that I wasn't. There wasn't anyone giving me any kind of direction other than shoving me out the door.

I haven't heard back from her after letting her know that sinus rinses still bring me agony ... my ear is killing me, my nose feels like someone is raking the inside of it w/ a wire brush ... so ... yea, I still hate life. I'm hoping she checks back in before she goes home today.

[annekat]

Changing your diet might be a good thing, but it doesn't sound like what will fix this crisis you are in. I hope your rheumy starts realizing the seriousness of this, and soon!

[drz]

Thanks. I am exhausted. I am sitting here at work feeling like I can't breathe. I have made so many itty bitty mistakes. Not in my job ... no ... I'm always on top of that. But I sent out an email asking to get some hours covered on March 15,16 and 17. Yea .. I meant May. I even wrote them down on the sheet to let people sign up as March.
I also kept saying the wrong thing when talking to my co-worker.
I don't know what to do and I feel very alone.
I started crying in the ER becausae I feel like a burden. I don't want to be in this life anymore.

I am sorry you are not getting better medical care and some help to relieve your discomfort. It sounds horrible to have to endure such pain and frustration. i think if I were in your situation if I could swing it, i would leave for Mayo Clinic or Cleveland Clinic to get some in-patient help and relief.

[annekat]

I am sorry you are not getting better medical care and some help to relieve your discomfort. It sounds horrible to have to endure such pain and frustration. i think if I were in your situation if I could swing it, i would leave for Mayo Clinic or Cleveland Clinic to get some in-patient help and relief. There is also the vasculitis specialist center at UC San Francisco with Dr. Sharon Chung, included on the VF specialist list. Hardly any distance to travel, and has been discussed before, but it seems to come down to that it is not in the Kaiser health care network, if I remember right.

[Rini]

Thanks everyone. This is why I absolutely love and adore this forum. I felt so alone and perhaps, a little crazy. But then, I see all these wonderful remarks and I am reminded that I am not alone. Not at all. I have all of you.

I spoke briefly via email with my rheumy today. She wants me to change my diet again. I've been meaning to do this but have been very lazy about it. It's just easier to eat what's put in front of me. She also said she hoped that I was off work still. I told her that I wasn't. There wasn't anyone giving me any kind of direction other than shoving me out the door.

I haven't heard back from her after letting her know that sinus rinses still bring me agony ... my ear is killing me, my nose feels like someone is raking the inside of it w/ a wire brush ... so ... yea, I still hate life. I'm hoping she checks back in before she goes home today.

We are happy to have you too! I visited a Weggie in Canada for a bit,(A very irreplaceable experience) and the family I staid with was gluten free. By the time I came home my blood test results showed great improvement and sticking to the diet helped me stay off pred. I know not everyone reacts the same but rest and diet are really vital points in recovery. It really makes a difference, it just takes a little bit. I hope this new plan helps you!

[Geoff]

One thing that has definetly helped me Nikki with my WG journey when things got really rough was to get some counselling. About 3 years ago when all my treatment wasnt working I seriously doubted i would "see Christmas", however the team at Addenbrookes recognised this problem and offered me the services of an "in -house" team of counsellors. They, along with a 2 year programme of Retuximub, turned things around for me.
I agree with the comments made here that you must get seen by someone who knows what they are dealing with, and give you some inner peace that you can take and start rebuilding from within. A couple of small steps, taken now, will break this circle of fear and doubt. Start by looking after number one, YOU!!

[Tr1957]

Look up the NationalInstitute of health and find where the nearest wegeners study is being conducted and contact them i did plus seeing my rheumotologist both drs conferred with each other and put me on an agressive treatment plan which seems to be working for me- goog luck