Just Diagnosed

[Rini]

Hi, I’m new! I am excited to find this sight, and people who have experience with this thing. I was diagnosed yesterday.
April 3th I almost, should have, passed out and was taken to the ER. They found a clump the size of my fist (seriously I measured it) in my lung. I was sent home on pneumonia drugs. About two weeks later my dr. could not find a drug to help and one night breathing got hard and I went back to the ER. I spent a little over 3 weeks in the hospital getting every test my continually growing team of Dr.s could think of. One of them decided to do a nose biop for wegeners granulomatosis. I was sent home on augmentin for my lung. No one would give me my biopsy results & I was getting concerned about what I found online, so I applied to this sight. I did not get better and with all the coughing, nose “bleeds” (the stuff looks like jerky), breathing trouble, and feeling like I was going to blackout I tried to contact my doctors.
In the end my mom took me back to the ER where one of my doctors found my test results and put me on 40 of prednisone. Also while in the ER I had them do a urine tests. I had “very low” levels of micro blood. That’s new. The nurse assured me it was nothing but I can’t help but feel uneasy. I know very little about WG drugs but it seems like there is another drug I should also be on. Should I be concerned?

[Sangye]

Hi Rini, welcome to the group. So your docs found a lump in your lungs the size of a fist and didn't biopsy it??

Prednisone is not enough to keep Wegs under control. Trace blood in the urine is nothing to worry about but you do need to get thoroughly checked out and put on proper drugs. Where are you located?

[NicShaf]

Welcome to the site Rini. It really sounds like the doctors in the ER are not knowledgeable in Wegs. Prednisone is a start to treatment, but they should be talking to you about other treatment options. Your case sounds similar to how mine started. Nose bleeds, sinus involvment and lung involvement. I was sent home with pneumonia because of "cloudiness" in my lung, and two weeks later when it didn't get any better, I was diagnosed with Wegs after a couple days in the hospital.
Did they do any blood tests? You have a right to your biopsy resluts, they should not be keeping them from you.

[Rini]

HI! I am in Indianapolis Bloomington, the thing in my lungs was close to my rib and they just stuck a needle and and sucked some out. The first time it was like toothpaste and they did test and cultures but nothing would grow. The second time they tried was almost 2 weeks later and it was too much a solid to get anything. For several reasons one doctor wanted a surgeon to cut it out and the surgeon REALLY did not want to do it. As this would mean the bottom 1/3 of my lung. i was with him (if i had options). I have an appointment monday with a doctor from the hospital team, i want to get on the right drugs but I do not know what to ask for.

[Rini]

Welcome to the site Rini. It really sounds like the doctors in the ER are not knowledgeable in Wegs. Prednisone is a start to treatment, but they should be talking to you about other treatment options. Your case sounds similar to how mine started. Nose bleeds, sinus involvment and lung involvement. I was sent home with pneumonia because of "cloudiness" in my lung, and two weeks later when it didn't get any better, I was diagnosed with Wegs after a couple days in the hospital.
Did they do any blood tests? You have a right to your biopsy resluts, they should not be keeping them from you.

Yes they did the blood test and decided it was not enough to go on. They were very doubtful as I am 18. I was waiting for the biopsy for over a week, they kept saying it wasn't back yet. Strangely the results magically became available after I went to the ER and one of them HAD to see me. How did u get diagnosed so fast at the hospital?

[Sangye]

i want to get on the right drugs but I do not know what to ask for.
Rini, it isn't your job to know what to ask for. You aren't a medical doctor! Cleveland Clinic is the closest vasculitis center to you. I suggest you travel there and get a proper assessment and treatment plan. Your local docs can administer the treatment and you can consult with CC as you need.

[Rini]

Thank you, you guys are very help full and I feel so much less stressed being able to ask questions to people who know what they are talking about! It has been close to seven weeks of doctors looking like they found an alien and saying "interesting". It dose not help that I react to every drug they find differently than expected. I will look into the clinic!

[maria garcia]

Thank you, you guys are very help full and I feel so much less stressed being able to ask questions to people who know what they are talking about! It has been close to seven weeks of doctors looking like they found an alien and saying "interesting". It dose not help that I react to every drug they find differently than expected. I will look into the clinic!

Have they done blood work to check the Anca's. Positive C Anca is related to Wegners? So when the results magically appeared what was the diagnosis?

[Rini]

Have they done blood work to check the Anca's. Positive C Anca is related to Wegners? So when the results magically appeared what was the diagnosis?

I think the blood was the positive test and the biopsy had granules. (i think that is the word) They decided with the lungs, buggers and blood i could be diagnosed for wegners granulomatosis with a lung abscess. It was more of a "yes! your test was positive, take steroids and go home we don't want to see you till monday," and now i am back to waiting.

[Sangye]

Rini, you're so young-- are your parents helping?

[Rini]

Rini, you're so young-- are your parents helping?

O yes, my fam is pro @ this. I was the freak of the family for not having a autoimmune system disease. My grandmother has lupus and my mom and recently diagnosed sister have crohns. She is younger, but had way less drama as everyone knew what she had. they tell me this is not genetic, I don't think I can believe that. My dad did research as soon as any of the doctors mentioned it as a posibility and would not let me come home from the hospital until they tested me. My mom staid with me a lot and many of my friends and family came buy for support. @ the hospital it was not unusual for someone to exclaim "you are a teenager!" walking in the door. I still am very happy 2 have found this sight and get to read about what this thing is. I don't know what age is common for this but my doctors keep saying this is early.

[Daggar]

Hello Rini,

Sorry to hear about your illness. According to our daughter Holly's specialists WG in youth is rising slowly but surely. They get a few more kids every year.

Good to hear you have family support and their history with autoimmune disorders will go a long way in helping you through.

That "genetic" connection is a tough one to understand -- I've tried my best to read everything pertaining to it yet the best I can discover is that research in that area is our best hope for finding a cure or better treatments. As far as genetic predisposition for the actual disease - it is much harder to make that link at this point... but then again... it is hard to make any "consistent" links with this disease. Many factors (environmental, infections, vaccination/drug reactions, etc.) have a role to play but in what order, time frame and what percentage is a real mystery.

Getting the right medical experts on your team is key now .....

[Sangye]

Wegs typically affects older people than you (age 40 and up). But we have many members on here who are in their twenties, and many who were diagnosed as teenagers.

Wegs is not genetic, though I understand how it might look that way to you! Glad to hear you have family advocating for you.

[elephant]

Go to Cleveland Clinic, I go there and see Dr Langford. You need to get proper treatment, you are very young. Wishing you the best!

[Rini]

Dr. Langford? ok, that is slightly far away but I hope to try and go this week end. I am surprised to find you live so close!

[elephant]

I live in Greenville.sc, i usually drive 10 hours there to see her. But this time I am flying. Need to call the Cleveland Clinic and make an appointment. Have you been to the Vasculits Foundation web site yet? Good information there along with Weg specialist.

[Rini]

gass is so expensive! I will go to that sight now

[mama2005]

Hi, I am twenty four years old and was just diagnosed earlier this year. The staff at Cleveland Clinic is great. I see Dr. Hoffman. It is worth your gas money I have to drive three hours to get there and I am going there every month. No one in my town has ever treated anyone with Wg so I am making the drive. In my experience get an early appoinment because they will send you around to several docs and will have most test results the same day. Its truly a great place and you will be in great care.

[pberggren1]

Speaking of the price of gas we are paying 4.12 a gallon here right now. That is 4.12 Canadian dollars per 3.78 litres of gas.

[mama2005]

Here we are paying 4.15 to 4.25 for a gallon. It sucks but I can't walk so I keep using the good old car and paying the crazy prices.

[Rini]

Went to c my Doc 2 day, they decided they want to take out 1/3 of my lung...without the last biopsy confirmation they don't want me on weggie drugs. My parents are considering Clevelan. I see the same surgeon from the hospital wednesday. This is the guy who spent 3 days explaining to me why even tho the doctors wanted me sliced he would not do it. Graduation is in 3 weeks, I have not been to school in...i think 7 weeks so I have no grades. Surgery would put me back in the hospital for @least 4 weeks, odds r a few more. I think I have finally snapped.

[mama2005]

Good luck I hope you start feeling better.

[BrianR]

Hi Rini.

So you have not been 100% diagonsed with WG? Is that correct? Why do they want to take out one third of one of your lungs? What do they suspect?

[Chris G]

I think the blood was the positive test and the biopsy had granules. (i think that is the word) They decided with the lungs, buggers and blood i could be diagnosed for wegners granulomatosis with a lung abscess. It was more of a "yes! your test was positive, take steroids and go home we don't want to see you till monday," and now i am back to waiting.

This post from a few days ago suggests that they DO think you have wg. Is that correct? Removing part of your lung is not a cure! You would need to be on wg drugs. I suppose if they're preparing your for a major surgery, that could be a reason to delay immunosupressant drugs. But if that's the case, they don't seem to be communicating with you very well. Did they give you any other insight today??

I agree with those who are urging you to go to Cleveland. I'm not at all confident that this team of doctors is able to treat wg.

[Sangye]

I believe Rini is referring to an open lung biopsy, which takes a large area of the lung for biopsy.

Rini, please go to Cleveland Clinic (or any major vasculitis center) before making such a decision. It might not be necessary, or they might be able to do a biopsy via bronchoscopy without removing a lot of tissue at all.

[drz]

Went to c my Doc 2 day, they decided they want to take out 1/3 of my lung...without the last biopsy confirmation they don't want me on weggie drugs. My parents are considering Clevelan. I see the same surgeon from the hospital wednesday. This is the guy who spent 3 days explaining to me why even tho the doctors wanted me sliced he would not do it. Graduation is in 3 weeks, I have not been to school in...i think 7 weeks so I have no grades. Surgery would put me back in the hospital for @least 4 weeks, odds r a few more. I think I have finally snapped.

Please get a second opinion before such surgery!

[pberggren1]

I'm so sorry to hear this Rini. Maybe the lung doc you see on Wednesday will have a different opinion in this matter. Again I can not echo enough what the others have said on here as well about getting to Cleveland to see Dr. Langford or another Wegs doc there. In most cases of Wegs with nose and sinus involvement a biopsy of the nose gives a positive for Wegs but not always. A lung biopsy has many risks so I urge you to get as much info as possible from the docs as to why it is being done and ask them about going to Cleveland or at least consulting with them.

[Rini]

I believe Rini is referring to an open lung biopsy, which takes a large area of the lung for biopsy.

Rini, please go to Cleveland Clinic (or any major vasculitis center) before making such a decision. It might not be necessary, or they might be able to do a biopsy via bronchoscopy without removing a lot of tissue at all.

I have a positive blood test and nose biop. I was told I was diagnosed but now they want a lung biopsy. The thing in my lungs the size of my fist (6.5cm, I measured the x-ray and my fist while bored in the hospital) is just to big. My parents are pushing for a biop and referral so that insurance will cover a trip to Cleveland, with a positive diagnosis I can try a weggie drugs and see if they help the growth but It most likely is getting cut out. It is to big for drugs to do any impact and has yet to respond to anything after 7 weeks. The thing has closed itself off in the botom 1/3 of my lung and happy to stay. I will find out wednesday if I can get a biopsy or if they are following doctors orders and just taking it out. I think m parents will help me push for a biop but the thing will in the end get cut out.

[pberggren1]

So what exactly is in your lung that needs to be cut out? Is it a large granuloma growth that has killed a part of the lung?

[elephant]

Rini, you need to get a second opinion. I do go to Cleveland Clinic and see Dr Langford. I did get a little chunck taken out of my lungs, mine was done laporscopy...so the insicions were small. They called it VATS ( video assisted thoracic surgery). Hate to say this, but it was one of the most painful surgeries I ever had. I took me about a year to really get over it. I wished at that time I had a wegs specialist. Anyways, they did comfrim Wegs, they thought it might be cancer. I knew it was a Weggie nodule sitting there to give me some trouble.:0

[Sangye]

I have a positive blood test and nose biop. I was told I was diagnosed but now they want a lung biopsy. The thing in my lungs the size of my fist (6.5cm, I measured the x-ray and my fist while bored in the hospital) is just to big. My parents are pushing for a biop and referral so that insurance will cover a trip to Cleveland, with a positive diagnosis I can try a weggie drugs and see if they help the growth but It most likely is getting cut out. It is to big for drugs to do any impact and has yet to respond to anything after 7 weeks. The thing has closed itself off in the botom 1/3 of my lung and happy to stay. I will find out wednesday if I can get a biopsy or if they are following doctors orders and just taking it out. I think m parents will help me push for a biop but the thing will in the end get cut out.
Rini, some of this info is incorrect. If it is indeed Wegs it is not too big to respond to treatment. Maybe to the treatment you've had already, but not to the appropriate drugs. Also, Wegs isn't like cancer. There isn't a tumor that needs to be removed. Wegs lesions are your own tissue that has sort of ulcerated. Surgically removing Wegs lesions is not done.

The other problem with doing such an invasive surgery is that you won't be able to travel to CC for awhile. Like Elephant said, the recovery is long.

Here is what I suggest: Contact CC to have them consult with your doctors on your case. They can advise what should be done. This is a free service offered by the docs in the Vasculitis Foundation. Then you can either have the procedure at home or travel to CC and become a patient there.

[Rini]

Rini, you need to get a second opinion. I do go to Cleveland Clinic and see Dr Langford. I did get a little chunck taken out of my lungs, mine was done laporscopy...so the insicions were small. They called it VATS ( video assisted thoracic surgery). Hate to say this, but it was one of the most painful surgeries I ever had. I took me about a year to really get over it. I wished at that time I had a wegs specialist. Anyways, they did comfrim Wegs, they thought it might be cancer. I knew it was a Weggie nodule sitting there to give me some trouble.:0

did they take it all out or did weggie drugs make it go away? ya the surgun explaind the painful part...the after drugs freek me out more then the idea of the surgery...i hate the word epidural & know if they do end up haveing to go the most extream root i will be saying it a lot. once again I am back 2 waiting on second opinions and haveing door 1 &2, drugs and big operation...

[pberggren1]

Unfortunately your case points towards Wegs and going without the drugs is not an option. You are strong and brave and will make the right decision to get Cleveland involved one way or another.

[Chris G]

You do seem to have a confirmed wg diagnosis, so you do need wg drugs. There's no way around that. Pred alone will not send the wg into remission, nor will it shrink your lung lesion. The thought of major surgery must certainly be scary! And it seems like most of us here, think that it MIGHT not be necessary. If your docs would just CONSULT with the Cleveland Clinic docs at this point, and find out whether such a lesion/tumor could be treated with wg drugs, you could get started right away on the drugs you need, and save you having an unnecessary surgery.

[aewaustin]

Rini, I feel for you, I was 20 when I was first diagnosed and I really did not understand much of anything that was going on, it was really hard. I can't tell you how much I recommend going to see Dr. Langford at Cleveland Clinic. She is an expert who works with Wegs every day, and her experience is invaluable. I flew up there from Austin, Texas earlier this year to get diagnosed and it was the best money I have ever spent. Even once you are confirmed Wegs there are still options, and you need to make sure you understand the medicines that are available and what is the best for you. My doctor in Austin has several Wegs patients and she still wanted me to go get the consult with Dr. Langford.

Best of luck to you, and keep us posted!

Anna

[elephant]

Rini, yes they took the whole lung nodule out. Again, see a Weg specialist. LIke Ann said," it is the best money she ever spent." Just give them a call, take it one day at a time. I know this is a scarey and stressful time. Hang in there.

[Rini]

Rini, yes they took the whole lung nodule out. Again, see a Weg specialist. LIke Ann said," it is the best money she ever spent." Just give them a call, take it one day at a time. I know this is a scarey and stressful time. Hang in there.

I got the surgeon to promise to send Clevelend info and help get that contact but in the end all my test results suggest the worst. the Bob blob was infected and in my case they have to try to just remove Bob. it is more then likely that he will take 1/3 of my lung with him. It all depends on what they find inside. No matter what I am in for surgery Friday morning and will most likely be offline for a bit. Thank you for your help and I hope to post back with better news and answers.

[pberggren1]

I wish you the best Rini. We will all be praying for you.

[Sangye]

I'm sorry you have to have surgery but I hope it goes well, Rini.

[chrisTIn@]

...I hope to post back with better news and answers.

I hope so too, Rini. I read your story and all the good advice you got here.

Hope that your docs consult the Cleveland WG-experts before doing anything.
Good luck girl!

[maria garcia]

Hoping for the best! Stay strong this will pass. KIT<3

[jmmilliorn]

Very good advice from Anna. I flew up from DFW to Cleveland. See pics in my albums. A wonderfully nice place. Great doctors.

[Rini]

Thank you guys! I am up and walking...still a few stitches and staples. Down to the last tube and probably taking it home with me tomorrow. Surgeon said labs came back today positive for wegeners so I am 100% finally confirmed for diagnosis and talk to another doctor in the morning about it. My stuff is being/has been consulted with Cleveland and my parents have agreed to a trip. I will graduate after I do one last English paper and a few government parquets/tests... hopefully in time to walk. :hug3:I am stoked to have them say what it is and deal with it. Getting a new game plan in the am!

[Rini]

Rini, some of this info is incorrect. If it is indeed Wegs it is not too big to respond to treatment. Maybe to the treatment you've had already, but not to the appropriate drugs. Also, Wegs isn't like cancer. There isn't a tumor that needs to be removed. Wegs lesions are your own tissue that has sort of ulcerated. Surgically removing Wegs lesions is not done.

The other problem with doing such an invasive surgery is that you won't be able to travel to CC for awhile. Like Elephant said, the recovery is long.

Here is what I suggest: Contact CC to have them consult with your doctors on your case. They can advise what should be done. This is a free service offered by the docs in the Vasculitis Foundation. Then you can either have the procedure at home or travel to CC and become a patient there.

this was very impotent and helpful information, thank you for getting that i was missing it

[maria garcia]

Reni was your Large lesion removed?

[vdub]

you've been thru a lot.... get that last english paper done, graduate, and then focus on your new disease. Maybe you should be a nurse,.....

[Rini]

Reni was your Large lesion removed?

surgeon said it was about the size of a baseball, a kind of harder outside then inside of dead tissue like stuff. Positive for wegeners but i get to find out more about the labs when I talk to the other guy in a few hours. it was stuck to my lung wall so it couldn't stay and took a piece of me with it but i hear my lung might kinda stretch out and take up a lot of the space. that seems cool.

vdub-I am going for biology next year if I can do the math and a lot of people have been saying that today...the nurse thing, even my nurse said it. I think i might keep trying to do the marine bio but just do a lot of sonar or something more with people then with deep sea scuba. going to the bottom of the ocean with "inflammation of blood vessels" really sounds bad. It just cannot be a good idea. I like ur plan. can u explain how i should pronounce ur name?

[pberggren1]

Such good news Rini! Of course it is not good you have Wegs. It is good that you are consulting with Cleveland and going there as well and finally know for sure that it is Wegs. Was it the biopsy of the lung junk that confirmed the Wegs? You would make a good nurse. If you are not strong in math there are many good tutors out there that can help. I used to tutor math for high school and college students.

[Rini]

Such good news Rini! Of course it is not good you have Wegs. It is good that you are consulting with Cleveland and going there as well and finally know for sure that it is Wegs. Was it the biopsy of the lung junk that confirmed the Wegs? You would make a good nurse. If you are not strong in math there are many good tutors out there that can help. I used to tutor math for high school and college students.

lol mr. u might have a new problem in ur next year.ya the lung biopsy, it was too big to call it that, was a final thing to seal the deal. I do not kid u about the math, it is summer and I am not taking it with my few required graduating classes anymore,but i will in the fall. I don't know what class but i very probably will be asking questions.

[Daggar]

Good news Rini that the surgery was successful!

Sounds like you're heading in the right direction. There'll be ups and downs with WG but it sounds like you'll have a handle on it. :thumbsup:

Dealing with Holly post WG ..... school/education can wait a bit while you recover and get your health back online. Don't stress too much about it because you'll catch up. Holly received a lot of help from her teachers in catching up after missing nearly 3 months of school.

[Sangye]

Rini, I'm so glad the surgery went well and they were able to pin down a diagnosis. I'm sorry it's Wegs, of course, but at least you can get started on proper treatment. I'm really happy they're consulting with CC and you're going to go there for treatment. Way to go, girl. :thumbsup:

[pberggren1]

Rini, should I brush up on my math? It has been a few years since I tutored.

[Rini]

and now my car is being pelted with hail...r u guys doing ok w/ these tornadoes?

[jmmilliorn]

You will love CC. I have posted a few pics from my stay there at my Forum Albums link for anyone who would like to see the fabulous place. Think Epcot.

[pberggren1]

and now my car is being pelted with hail...r u guys doing ok w/ these tornadoes?

You have a car at your age? Year, make, and model please.

[Rini]

You have a car at your age? Year, make, and model please.

hahahaha its a kia and I got it in a game of shuffle plats which is like musical chairs with cash and licensees plats and old cars. I can't drive it now with all the drugs but I have been driving for several years. I am actually looking for a motorcycle but I am so short and picky I haven't found one I wouldn't have to pay extra and change.

[drz]

You will love CC. I have posted a few pics from my stay there at my Forum Albums link for anyone who would like to see the fabulous place. Think Epcot.

I agree the pix really show a nice looking place that looks very customer friendly. I thought it looked more inviting than the Mayo clinic in Rochester.

[Rini]

I agree the pix really show a nice looking place that looks very customer friendly. I thought it looked more inviting than the Mayo clinic in Rochester.

the pics make it look very inviting and big

[pberggren1]

CC is big for sure. My mom has a hyundai, her 3rd, an elantra and likes it very much, what model of kia and year do you have?

[Rini]

CC is big for sure. My mom has a hyundai, her 3rd, an elantra and likes it very much, what model of kia and year do you have?

you don't drive? is it ok to ask what is your job?

[pberggren1]

I drive, have had my licence since I was 16 in 1992. I have not worked in over a year but my last job was part time as a security guard at night at a local hotel. I had to quit that because of a bad lung infection that I still have and had a flare of Wegs the last few months as well.

[Rini]

I drive, have had my licence since I was 16 in 1992. I have not worked in over a year but my last job was part time as a security guard at night at a local hotel. I had to quit that because of a bad lung infection that I still have and had a flare of Wegs the last few months as well.

hum this can be a tricky thing to have and work with, what kind of jobs do you other guys on the weggies page do? (when not MIA)

[jmmilliorn]

Yes, the Cleveland Clinic IS quite large. I think the name is misleading. I pictured some brick-covered little place built in the 1800's with little old men sporting long white beards bent over their beakers and Bunsen burners doing research on obscure diseases. Perhaps this is due to the alliteration of the double "c" cononsants and the use of the "clinic" which imparts a much smaller mental image. A more accurate moniker might be The Cleveland Complex. There are about 2000 doctors and 40,000 employees working at the Double C "Ranch" to put it in Texas terms. The campus is extensive, and there are 84 operating rooms where they do over 60 heart surgeries daily.


the pics make it look very inviting and big

[jmmilliorn]

PB,
You are about the same age as my daughter, Megan, who was born in 1975. She has been diagnosed with MS in the last couple years. She was having X-rays to determine why she has so many headaches and they discovered lesions in her spinal column. She takes regular infusions and so far has not had typical MS symptoms. She has, however, continued to experience the headaches, sinus problems and the benign thyroid tumor that my Dad and I both experienced. Hope she doesn't get WG as well. My Dad didn't. He died of a heart attack at 70. My heart is quite healthy, thankfully. Dad didn't benefit from statin drugs I guess.

When you get back into remission, what type of work would you like to do ideally? Sounds like you have an interest in automobiles. Perhaps something related to the auto industry? I'd volunteer to caretaker that stable of fine cars you described recently. It must be difficult for them to keep them all properly tuned and running, government inspected, clean and organized, with insurance, proper tires and tire pressure, etc. Sounds like a good job for an old retired guy like me. I don't want to be a Walmart greeter.


I drive, have had my licence since I was 16 in 1992. I have not worked in over a year but my last job was part time as a security guard at night at a local hotel. I had to quit that because of a bad lung infection that I still have and had a flare of Wegs the last few months as well.

[Rini]

PB,
You are about the same age as my daughter, Megan, who was born in 1975. She has been diagnosed with MS in the last couple years. She was having X-rays to determine why she has so many headaches and they discovered lesions in her spinal column. She takes regular infusions and so far has not had typical MS symptoms. She has, however, continued to experience the headaches, sinus problems and the benign thyroid tumor that my Dad and I both experienced. Hope she doesn't get WG as well. My Dad didn't. He died of a heart attack at 70. My heart is quite healthy, thankfully. Dad didn't benefit from statin drugs I guess.

When you get back into remission, what type of work would you like to do ideally? Sounds like you have an interest in automobiles. Perhaps something related to the auto industry? I'd volunteer to caretaker that stable of fine cars you described recently. It must be difficult for them to keep them all properly tuned and running, government inspected, clean and organized, with insurance, proper tires and tire pressure, etc. Sounds like a good job for an old retired guy like me. I don't want to be a Walmart greeter.

like kato in the green hornet? what a fun idea. If u get to pic a job make it something fun that can be not depressing everyday.

[vdub]

I don't want to be a Walmart greeter.
I am quite content being retired and really feel bad for all of you who have wegs in the prime of your life.... That's just a darned poor twist of fate. I was lucky to already be retired (I punched out of the workforce when I was 55 in 2006) when I was dx'ed in 2010. I had plenty to do, was living life the way I wanted, and was pretty happy with things, but for the last year, learning about and managing this stupid disease has been a full-time job in and of itself. I can not imagine doing it with a young family.

To be perfectly honest, I find the disease quite fascinating and interesting to study. I can see where a doctor can make a career out of just this one disease.

[drz]

When people ask me what do you do referring to occupation, I tell them I am a Health Care Consumer which seems accurate given the time and effort I put into keeping appointments, getting meds, taking them correctly, managing my diabetes, doing routine lab work etc. I agree managing ones health seems to be nearly a full time job now and can't imagine trying to work besides. I admire those of you who can and imagine it must really be a struggle at times for many of you.

[Sangye]

LOL "Health Care Consumer" Priceless! And very accurate! It takes all my time, too.

[vdub]

Health Care Consumer
That is quite good! LOL

[Lightwarrior]

hum this can be a tricky thing to have and work with, what kind of jobs do you other guys on the weggies page do? (when not MIA)

I am a critical care RN, I am currently the Clinical Nurse Expert for ICU in our hospital, I also teach Bachelors of Science in Nursing (BSN) and Masters of Science in Nursing (MSN) online. Rini, what is your passion?? choose a career that you love, then look for something within that career that will allow you to be safe, good health care benefits and the ability to slow down when you need to.

[pberggren1]

I just tell people I am a Wegs specialist. I usually get some blank looking faces after that response.

vdub, I know what you mean about a doc making a career out of Wegs. My doc certainly has. He has told me many times that my case is one of the most interesting he has ever seen and has seen over 1000 cases. I told him about Martas book idea and he said that is a very good idea and also said he is documenting my case once I get back into remission and hopefully off of pred and Imuran, probably 2 years or so.

Mike, my two cousins around my age also have MS. One of them went to NY to have the liberation treatment and she is doing much better now. Has your daughter considered this treatment?

[pberggren1]

If I were in good health I would love to tend to a stable of cars.

[vdub]

Hey, I was at your hospital about a month ago! I was out at the Proving Grounds and had to get blood tests, so went to the yuma hospital. Had I only known. Next year maybe....

[jmmilliorn]

Drz,

I prefer to refer to my status as "self-unemployed."


When people ask me what do you do referring to occupation, I tell them I am a Health Care Consumer which seems accurate given the time and effort I put into keeping appointments, getting meds, taking them correctly, managing my diabetes, doing routine lab work etc. I agree managing ones health seems to be nearly a full time job now and can't imagine trying to work besides. I admire those of you who can and imagine it must really be a struggle at times for many of you.

[jmmilliorn]

PB,
I will ask Megan what she knows about this. I am unfamiliar with it.

Mike, my two cousins around my age also have MS. One of them went to NY to have the liberation treatment and she is doing much better now. Has your daughter considered this treatment?[/QUOTE]

[elephant]

Rini, so glad it went well. If you have any questions about your recovery and what to expect, just ask. Don't forget to take deep breaths and cough. I know it hurts to cough. Make sure you eat a high fiber diet or take a stool softner if your on Pain pills like codiene....ect.

[drz]

Drz,

I prefer to refer to my status as "self-unemployed."

I bet that gets you a lot of puzzled looks?:unsure:

[drz]

That is quite good! LOL

I have also said I am a professional patient who helps support the health care industry. Boy would I love to have the money that has been spent on my health care

[Rini]

Rini, so glad it went well. If you have any questions about your recovery and what to expect, just ask. Don't forget to take deep breaths and cough. I know it hurts to cough. Make sure you eat a high fiber diet or take a stool softner if your on Pain pills like codiene....ect.


UGH! i totally could not come home until I pooped and let me tell you I am not happy about all that...I am now on apple juice ;) I have supper girlly coughs but I was given a breathing toy so I am working on it. I finally got my mom to take pictures so I could c all this junk, most are of the tubes but that grosses me out so I'll just post the cool one. I'm healing up, if not painfully. oddly the pain is more in the unmarked spot or my arm. It is cool to hear more about everyone.1065

[Sangye]

Wow, Rini that shark bit you pretty bad! :ohmy: Glad you got to go home.

[Rini]

Wow, Rini that shark bit you pretty bad! :ohmy: Glad you got to go home.

hehe totally dude, to learn to surf is on my bucket list

[pberggren1]

hehe totally dude, to learn to surf is on my bucket list

You are quite the hipster Rini.

[Rini]

What are side effects of cytoxan?

[pberggren1]

What are side effects of cytoxan?

Oh boy! I knew you would be asking this.

It is a long list of nasty ones for sure. I would google it. I used to have a list but cannot find it right now. I'm sure others will chime in here soon as well. One side effect I have had recently is bleeding in the bladder. It also causes bladder cancer. It weakens the immune system so one has to be careful when out in public not to be around sick people for too long or maybe wear a mask to prevent getting an infection. Please do not worry to much about all the side effects.

[elephant]

It looks like your incision is healing nicely! I remember cleaning it and putting sterile dressing on it. You will get through this, take your time.

[Chris G]

Oh Rini, that incision looks painful! I'm so glad to hear the surgery went well. I hope you're healing quickly!

[Rini]

I need 2 rant

my chest tub was clamped in an atemped to test the idea of taking it out. I have air leekage and with pred I am not healing up on time. the idea was I go for x-rays and if it stayed inflated while clamped I could get it out. I lost. woke up @ 4 having lots of air comeing out of the gash the tube is shuved in. I got up and took deep braths and a coughing fit & i did everything to get me lung back up, & did it. so tired I sat on the couch....I was still breathing with some force but I could get it in the bottom of my lung...I laid back and had pain and truble and finnally had 2 wake up my mom & get the clamp taken off 4 hours before the x-ray. I need sleep & a shower but I cant lay down or plastic rap my own side properly. I have to go through my college orientation Thursday. this just gt 2 me. I REALLY can't take another week of this. 4 hours...

[Sangye]

Rini, I wish I could take it away from you. You're so brave putting up with it. I've heard chest tubes are excruciating! I know you've totally had it and are really frustrated and worn down. You'll get through this. Rest today as best as you can. That might give you enough steam to make it to the orientation tomorrow. Big hugs to you, dear. :hug2:

[WeggieParent]

Rini - my daughter also had a hole in her lung and a chest tube from complications with WG. (She was 14yrs old when diagnosed over a year ago.) Reading your post about clamping the chest tube sure brought back memories! We went through that several times. If they aren't able to remove your chest tube soon, I hope it encourages you to know that she was able to go home from the hospital with a portable chest tube (we named it Fred) that she tucked into her jeans pocket and noone knew she had it. It took awhile but her lung fully inflated, they removed the chest tube and her lungs are good today! She even played softball this year at school. Prednisone will make the healing process take longer than normal but you will heal!! Hang in there! I sure understand your pain and frustration.

We also travelled to the Cleveland Clinic to see a WG specialist and I agree with everyone else - best money we ever spent!

Best wishes to you!

[pberggren1]

Rini, you will get through this. Like I said before, you are one tough cookie. You have a good attitude. I almost died 2 times in the last year and was bed ridden for several months. I had such bad pain at times I would drink large glasses of whisky with large doses of morphine. I do not encourage anyone to do that but the pain was so bad for so long I had to get some sleep. My doc knew I was doing this but tried to persuade me not to do it. I only did it a few times and have not done it for several months now. I have very little pain now. Hang in there Rini. You will be albe to make it through the orientation on Thursday.

[Sangye]

Phil. Do not ever do that again. That is a deadly mixture. Both alcohol and morphine depress respiration, and if you already have lung problems..... There is always a safer solution. If you have pain like that pressure your doctor for better pain control. Get the advice of pain management doctors. But for Pete's sake don't put your life at risk.

[Daggar]

Seeing as Phil stole my "tough cookie" (lucky is wasn't chocolate chip or batman and I would have to go a few rounds:wink1:) ....

Rini you're amazingly "resilient" so hang in there and this will pass soon enough.

[pberggren1]

Ya, I realize now it was dangerous to do that. I have not done it since June of last year and am not planning on ever doing it again.

The cookie was chocolate chip. Better get your cape on Daggar. LOL :ohmy:

[Daggar]

Capes-a-ready -- Gonna have to dust it off - not sure the "tights" still fit though! Picture Mr. Incredible from the cinematic gem "The Incredibles"!! You know the scene where he's hiding in his home office and trying to squeeze into the tights!! :w00t:
1261
Sorry Rini.... got sidetracked!!

[vdub]

I would drink large glasses of whisky with large doses of morphine
Been there, done that, and totally understand.... Sometimes it seems like a good thing.... Little dangerous, tho...

[pberggren1]

Even Batman dips into the bottle now and then. LOL

Mr. Incredible? Ha Ha, good luck! LOL

[Rini]

PHIL! that is REALLY scary and never ever ever an option again. can I get the story behind batman?

[Rini]

Rini - my daughter also had a hole in her lung and a chest tube from complications with WG. (She was 14yrs old when diagnosed over a year ago.) Reading your post about clamping the chest tube sure brought back memories! We went through that several times. If they aren't able to remove your chest tube soon, I hope it encourages you to know that she was able to go home from the hospital with a portable chest tube (we named it Fred) that she tucked into her jeans pocket and noone knew she had it. It took awhile but her lung fully inflated, they removed the chest tube and her lungs are good today! She even played softball this year at school. Prednisone will make the healing process take longer than normal but you will heal!! Hang in there! I sure understand your pain and frustration.

We also travelled to the Cleveland Clinic to see a WG specialist and I agree with everyone else - best money we ever spent!

Best wishes to you!


14!!! :'( I could not do this @ 14. I have a medium box

[pberggren1]

Rini, you could do this at 14! You are a strong person.

Batman is a whole other story. To make a long strory short, I had a friend that was being stalked and the police would not do anything about it. She was getting harrassing phone calls and the perp would walk by her house every day. I tried to politely reason with him but he denied everything. So one night I waited for him. I knocked him out, tied him up, put him in the trunk of my car, went to an old abandoned bridge and hung him upside down from the bridge. I then tried to reason with him again, but obviously he was quite stupid. I just left him hanging there and told him if I ever see him again this little episode will be minor compared to the next. I never heard or saw him again.

[Sangye]

And that, ladies and gentlemen, is why we call him Batman. :laugh:

[pberggren1]

Is there a Robin in our group?

[vdub]

And I thought Idaho boyz were tough. Swift Current has them all beat..... It took a while, but I finally got out from underneath that bridge.....

[Sangye]

And I thought Idaho boyz were tough. Swift Current has them all beat..... It took a while, but I finally got out from underneath that bridge.....
ROTFL Best. Reply. Ever. http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[pberggren1]

And I thought Idaho boyz were tough. Swift Current has them all beat..... It took a while, but I finally got out from underneath that bridge.....

Man, you sure have aged alot in the last few years. LOL

[Rini]

o man Phil that's great


orientation went well, actually ran into some people ik. found out l8er that I used the wrong tape on my chest tube pad. My dad had to cut me out so the dressing could be changed...when I went in (the day I lost and clamped the tube) they restitched me and all i could say was "I feel like a build-a-bear"

[Sangye]

Yay, you made it to orientation! I'm so proud of you, Rini. :hug3:

[pberggren1]

So what are you going to take in college Rini? This sounds exciting.

[maria garcia]

Your very strong for such a young age. You will be alright just keep fighting like you have been and the attitude def. will help you.

[penguin]

Hi Rini
I'm new too! I am also 18 and know how u feel as the doctors did the same with me last year, I wasn't properly diagnosed for a couple of months and when they finally settled for wegeners I was looked at by loads of docs like I was an alien too! I hope u get the right treatment soon.

[penguin]

wow, just realised this thread was like ten pages long! so u are probably on the right meds now! I'm still getting the hang of this website :razz: I have to say technology is not my forte! would be nice to talk to some other people about WG though so I'm gonna try and keep up!

[penguin]

Also, what is orientation? Sorry if I'm being nosy and asking questions!

[Rini]

Also, what is orientation? Sorry if I'm being nosy and asking questions!

HI penguin! its cool 2 hear someone else my age is on, i love to talk so questions r totally welcome. This sight is kinda tricky @ first to navigate but I like being able to hear from everyone. Orientation is when I went to my college and got walked around and set up with classes and ID and sat through some meetings. I got to meet some other freshmen and get taken around campus. what grade r u in?

[penguin]

Yeahh same! Ooh okay, what do u mean by grade? where are u from, America?

[Rini]

Yes I am in the U.S how bout you? I was asking about how you did school but Idk how to say it if u r not in America...maybe what level are you? hear we do kindergarten for like when you are 6 years old and then you go through grades up to 12 and then go to a college.

[Rini]

Tomorrow I go to the hospital for overnight observations. Plan is to clamp off tube & do x-rays when I can't breath. if I'm good the tube comes out, if I get a flat lung then I have an operation that involves powder to make my lung sticky and then I get the tube out...maybe a few days latter. I GET the tube OUT!!!:thumbsup::hug3::flapper:

[pberggren1]

This sounds like good news Rini. I hope you can get the tube out soon.

[Sangye]

I hope they don't have to do the surgery and your lung plays nice. :smile1:

[elephant]

Hope all goes well for you!

[vdub]

I am glad you two could get togeather. Sounds like you have a lot to talk about....

[penguin]

good luck Rini :thumbsup:

[Fran]

Hi Rini,

Good luck ~ hope all goes well :thumbup:

Fran

[Rini]

I felt ok but had bad x-rays, I go into surgery sometime today AGAIN :predrage:

[Psyborg]

Sorry to hear that :(

[Sangye]

Oh Rini, I'm so sorry. I'm hoping this surgery will do the trick. Hugs to you, brave girl! :hug2:

[drz]

Best wishes for success and quick recovery!:hug2:

[Rini]

I now have two chest tubes

[pberggren1]

I now have two chest tubes

2 chest tubes now?!!! Oh my!!!

Please tell more.

[mishb]

Oh no, one step forward two steps back.
I hope you start feeling better soon.
Here's to lots more steps forward in the right direction now.

[Sangye]

Oh Rini.... :sad: What do your docs say to expect?

[Lightwarrior]

I now have two chest tubes
Rini, I'm so sorry you have to go through all of this. Make sure you have adequate pain control and ask what the plan of care is.

[penguin]

oh no :(
two tubes, thats not so good!
hope this is just a bump in the road and that u can get over it soon and feel better.
what do the docs say? x

[Rini]

After being sick for a dozen weeks, in the hospital for a total of seven off and on, I have FINALLY gotten my chest tube out and free! well ok I have to stay till 2 for another x-ray to prove it will stay up. I have entirely lost count of x-rays i think i'm pushing 30...probably more w/ haveing them like 3 a day the last few. for now im on 20 pred and i get waves of my body just suddenly screaming "were not ok" somewhere late afternoon, dose anyone else get that? I have holes in my side that go to my lung but the tube is out & i will get to go home soon and get a real shower! and i can move around

[Rini]

I have not told anyone else yet, they are coming to visit and id rather not tell them over the phone b4 they get hear :hug1::hug3:

[Psyborg]

Congrats on getting the tubes out finally :) I hope your lung does what it is supposed to for you.

Sounds like a good surprise when they come :)

[Sangye]

Yay for being tubeless, Rini! I hope your lungs function well and you continue to get better. :hug3::w00t:

[vdub]

WOW! That is sooooo good! I'm really happy for you! I guess things do get better! :-)

[penguin]

Yey! finally you can go home! well done :)
hope u r feeling much better now and dont worry i think i know what u mean with the 'we're not ok' thing happening now and then, i think thats pretty normal as i seem to remember that too!
Glad u dont have to stay shut up in hospital anymore x

[Rini]

Went 2 the doc yesterday. Going from 60 to 40 pred! hope my face will be less puffy 4 school!

[vdub]

Great news! That's quite a decrease! I hope it does reduce the puffy stuff.

[Sangye]

That's great, Rini. :smile1:

[Rini]

so im not passing out all over the place like the last time they tried to take me down but my knees have been hurting, is this normal?

[Psyborg]

I had a little knee pain on and off. Though that has since cleared up for me. 20mg drop might be a bit aggressive it you have pain, you might ask your doc about that. Maybe they can do a bit less of a drop. Like 10mg but for a shorter wait between attempting to drop?

[delorisdoe]

I always experienced knee pain with the prednisone drops but it would taper off along with the puffiness. I dont think a 20mg drop is much of a deal when you are at 60 to begin with. it is the 1-5mg drops when you are around 10-20 that are difficult. good luck'

[Sangye]

I agree with Leigh. If the knee pain doesn't go away in a few days, let your doctor know. Pred-tapering pain can be intense, but it generally only lasts a few days after tapering to a new dose.

[Rini]

this seems like all good news, i actually cheated and added 10 today...back down a little slower. b4 I had started a cough and it went away almost as soon as i added the 10 (doing 50 for the day). I see the doc in 4 weeks but i will call if the pain increases or persists. It is so strange 2 feel like i have arthritis @ 19...my face looks puffy 2 me but is naturally round and is not as noticeable as my sisters got. I am not at home for the week and this morning i could already c a difference...i think it will be noticeably diff by the time i get home ;)

[RudiK]

My doc reduced my pred from 60 mg to 10mg over a period of five weeks and I didn't have any pains. I did have severe pains in my knees before I was diagnosed, bu none after I went on the ugly meds.
Rudi K.

[jola57]

Hi Rini, tapering from 60 to 20 was not difficult but it was painful. The good news is it lasted a short few days, it is tapering from 20 on down that I found very difficult and went down by 1mg increments per 1 to 2 months. Good luck

[Psyborg]

Isn't it weird how we all react different to the same drugs? I was never able to drop more than 10mg at a time going down from 60. I had to do 10mg every 2-4 weeks. Once I got to 20 we switched to 2.5 every 2-3 weeks. I was probably on a high dose longer than was good though in the first place as they started me at 80mg, and I was doing that much for like a month before the first Rheumy I saw freaked and lowered it to 60.

[Dumpy]

There must have been skid marks on the walls from you bouncing off of them at 80mg.

[Sangye]

LOL Try 1,550 mg (oral pred equivalent of 1,000mg IV pred)!

[Dumpy]

I don't know if I could handle that much Sangye. I was just about peeling the paint off the walls at 60mg. I can understand when you guys talk about waking up with your hearts racing when you were on that much.

[Sangye]

Yeah, it was not a pretty picture. I don't get more physical energy with higher doses of pred, but it makes my mind extremely hyperactive. It was quite uncomfortable for me to have my mind going a zillion miles a minute. Forget about meditating under those conditions!

[Dumpy]

I happen to get both physical and mental. This last time while I was on 60mg my wife and I remodled our kitchen (layed tile,repalced kitchen counter tops, painted walls and replaced appliances. I planned and researched everything more than once. My wife took a brunt of the Preds by having to be around for all of this (she is a wonderful woman) and was really a sport because I can be a pain in the ass when I get cranked up like this. She is really proud of the new kitchen though.

[Sangye]

ROTFL Dumpy! :laugh:

[Rini]

:O wow! 80?!?! i feel like a zombie going down just by 10. my heart dose not feel so bad but then again in the hospital I went up to almost 170 b4 they could figure me out....i lost so much weight that week, got it back now ;) meditating sounds like a really good idea...idk if i could get myself to figure out how to do it correctly tho.

[Sangye]

Meditating is as natural as breathing, Rini. You can learn it. :smile1:

[Rini]

Help! I woke up in the heat to a really bad smell & i feel like i have food poiisining but i havent had food....im really thinking about going 2 er...what could this b? its like the day i got diagnosed

[Rini]

im scared the heat & smell caused a flair... even though i kinda was on one 2 start w/....i do not want too do the ER i do not want 2 do the ER i do not want to do the ER...i need options because the feelings not going away

[pberggren1]

I'm so sorry you are feeling like this Rini. I think if it were me I would go to the ER, but that is easy for me to say because I know most of the docs here. But seriously, I would go to the ER. I am sure that others on here, including Sangye, would agree that you should go to the ER.

[Rini]

the feeling is easing up and i get to go home 2marow, i think i will call my doctor but its starting to look more like a 24 hour flue bug (i pray)....b4 WG i was a relatively healthy person so now even little things have me freeking out...mostly because i feel bad & know there is nothing 2 d but wait...if i get a nosebleed i will not wait anymore, i will go

[Sangye]

Rini, what was causing the bad smell? Is there some kind of chemical in your home or outside? Some chemicals can cause nausea. It's important to find out.

[Rini]

I tried 2 find out and it will always be a mystery :(

[Rini]

for a few days now I have had my right eye crying and I dont know why. It seems like the eye itself should b pink or ichy w/ it producing so manny tears but I cant get it 2 stop. I cant find anything in my eye and if i just let the tears build up it gets kinda goopy. this i so strange It has to be a symptom, can anyone tell me how 2 stop it? has anyone else had this?

[elephant]

You have inflammation going on, see an eye MD. Hope you stop crying soon!

[Dumpy]

Rini,

About 6 months after I was diagnoised with Wegs my eyes started running and wouldn't stop. At one time my left eye pluged and the tear duct wouldn't let the tears out and it became puffed and very painful. The eye doctor wanted to put tubes in my ducts but my ENT advised not to unless it was just unbearable. He made the right call because the tear duct finally healed and after 2 years of running they began to heal. I have to massage my tear duct to get it to release but very bearable, a lot more so than before. I wish you well with yours.

[Rini]

This just sounds bad, but than you guys....it is so much easier 2 deal with all this when I have an Idea of what can happen. Would it be more beneficial 2 c a WG doctor or an Eye doctor for the WG inflamed eye? externally it is not even pink....i just look sad.

[pberggren1]

My left tear drain duct became blocked about 3 years ago. I had surgery to unblock it but it was unsuccessful. And now my right eye is the same. When I wake up in the mornings my eyes a a goopy, crusted mess.

[Sangye]

This just sounds bad, but than you guys....it is so much easier 2 deal with all this when I have an Idea of what can happen. Would it be more beneficial 2 c a WG doctor or an Eye doctor for the WG inflamed eye? externally it is not even pink....i just look sad.
Rini, you need to see an opthalmologist (eye MD). A Wegs doc will send you to them, and that will take more time. It's most likely a clogged tear duct like Dumpy described, but it could be anything. And even a clogged tear duct can cause other problems. Please try to get in today. :smile1:

[Dumpy]

Rini,
How are the eyes? I know it can really be frustrating and a pan in the butt. Did you get in to see the Doc?

[Rini]

After being downtown for weeks I finally gave up and called my friends mom, both her parents are big in the hospital and got me set up with someone in the aria. I ended up getting a flue and a pneumonia shot. I also got to be late for my class :( Now i don't have to drive hours to get my blood work tho, I can just walk to the building next door. This is almost worth the letter grade taken off my speech paper.
Also the newest doctor is pulling all my files together so i have less of a mess when the history of my paperwork comes into topic. I am so tired and I am having trouble telling my symptoms, drug reactions and weather reactions apart. My voic sounds strange as of Friday & it is still undecided as to whether or not I get to keep it or go back to my natural one. My aunt keeps telling me it is just like what happened to my mom and probably permanent...this is sad because my aunt and I sounded identical on the phone B4. In general my eye has been less of a problem. I am not crying 24/7...things just get blurry off and on. I think I am on the flip side to recovery, just random tweeks each day...how r u all? where are u @ on this coaster?
(hope for no hiccups1436)

[Sangye]

Rini, I think things will settle down as time goes on. I bet your voice will return to normal, too. :smile1:

[pberggren1]

That sounds good Rini that you have a good doc now so close and don't have to go far to the lab. Sucks about the voice though, but like Sangye said I am sure it will get back to normal.

[Rini]

thank you guys, how are you these days?

[Rini]

I am taking speech at school and have to give an explanation speech. want to guess my topic? I feel like telling my class about what i have should be the easy part, I am not positive how to make the speech apply to them...we weggies are a rare breed...lately everyone i know has been reaching the "can i catch this" stage of excepting my diagnosis. growing up in a home of AI's the thought never occurred to me that people would be scared...I don't know how to react. My best friends mom has a AI and she explained to me that I am not to share food with her because she thinks they will get it... I know they are smart, where is this coming from?

[pberggren1]

I know what you mean Rini. I have met many others that I thought were fairly smart but when I tried to explain what Wegs is all about they thing it is contagious some how.......go figure, hey?

[elephant]

That is great that you are going to educate your class on Wegeners. Just keep telling them this is not a contagious disease. Most people know about Lupus and Rheumatoid Arthritis compare it with Wegeners. This is a good way to show awareness of our rare disease!

[Sangye]

I am taking speech at school and have to give an explanation speech. want to guess my topic? I feel like telling my class about what i have should be the easy part, I am not positive how to make the speech apply to them.
Maybe talk about the things healthy people take for granted like taking a deep breath, etc....



My best friends mom has a AI and she explained to me that I am not to share food with her because she thinks they will get it... I know they are smart, where is this coming from?
Try walking her through the logic: If Wegs were contagious then it wouldn't be a rare disease. :wink1:

[Rini]

Than you all, these are very good ideas

[Rini]

Two years latter and the ride details seem so jumbled. It is incredible to have this log of such wonderful support <3 I did end up in college and i did become a mechanic/nurse/technology person although I am not graduated yet. My major is a mouthful : Biomedical Engineering and Technology...this is the people who fix the IV pumps and life support machines and the cute new born intensive care machines. Finals are this week and I am worked up in a knot about my math grades. If i do not pass it is a long setback, if i do pass my classes I can look fairly serious at graduating with at least an associates next spring (2014). I would need to take a break before going back to finish a bachelors. As my body heals on the outside the war has turned internal. My emotions are a roller coaster of failed focus and long waves of depression. Weggie drugs are not conducive for learning and deep thought. My mother tells me off to set more realistically goals. All i hear is she wants me to expect less of myself now that i am sick. I know she just wants me to take it easy but the conversation always translates in my head as WG is a permanent obstacle in my life i refuse to lose to. From the outside I can trick anyone into believing I am fine for at least a little while and I hate explaining. This is awful because I want to be proud to be a survivor and raise awareness, not hide my problems like handicaps and ovoid the topic in job interviews. So many people on this sight have done some very incredible things for normal standers and all of use have done so in aline/ weggie standers. I drive through down town for school and they have all these marathons for Cancer and MS and things everyone has herd of. It is not "raising awareness" if everyone is aware =p I fully support fundraising for all these things but I feel like there is no short easy none alarming way to introduce such a big part of me to anyone. Worst of all i find myself being condescending in my head to people i pass and barely know. Crying about some incredibly trivial mishap. This is beyond ridicules because everyone has their own challenges. I am having mostly stability problems and I have tried counseling at school, the therapist on staff and several medications. In the end im a pred tapering monster with aggression and depression with a hefty scoop of peppy to survive. My boyfriend is very supportive but some of the few suport i have left as i still live on my own, my family moved about a city away, my friends one by one maxed out on the no fun sicky and left and my councilor is far to out of his league to help....like almost any doctor i have seen ever. My grandfather has had a minor problem and gone to the hospital but no one told me. As their only family in town I would have rather-ed some communication over him letting my forgetful grandmother drive herself home. She has diabetes and some undiagnosed something that makes it a very dangerous idea to leave her unsupervised. Sometimes i worry I will become that as she tries to tell me what day it is or what day they went into the hospital. anyway this is the group of people i am organizing hospital stuff for while my parents are doing their classes and work....with my finals...and that is my outburst -_- I cant sleep because my bones hurt from the rain :P I know if it where a more serius hospital situation my family would have come up....or so my mom says in a text after refusing to call me

[chrisTIn@]

Finals are this week...

Wishing you the best of luck, hope you can concentrate.
Then, when everything goes right, you 'll be able to take a break.
In my opinion, taking some extra rest always is good in case of jointpain.

You can be very proud of yourself, for doing so good already! :thumbsup:

[renidrag]

I'll say you should be proud. You have gotten this far in education, I am sure you can handle the finals. Just remember, you already know the answers. And always remember, we will be here for you.
Dale

[Dirty Don]

Feel better now Rini? You should, that's a load you just let off...you've done so much so far, you have so much left to do...the only thing in your way right now is you. You've dealt with the WG, the parents, the school, and now the grandparents...what's slowing you down? Accumulation? Hmmm, wait till you get older...oh, you ARE getting older...that's a good thing Martha! None of this goes away, and if some do, they are replaced by other hurdles in life. From what I gather, you got spunk...keep it up...so you're a bit tired, well, OK, a lot tired; you've won so far, keep winning...so saith Dirty for today's pep talk...you'll get it done, I have that feeling about you!

[Alysia]

Hi Rini
I dont think WG or the drugs are infecting our cognitive ability. the only obstacle is thinking that you cant. I think that you can do it. you are strong and facing bravely a lot of things. finals are not as dificult as having WG.
try to get enough sleep, even take something if needed.
good luck with your finals !

[Rini]

Feel better now Rini? You should, that's a load you just let off...you've done so much so far, you have so much left to do...the only thing in your way right now is you. You've dealt with the WG, the parents, the school, and now the grandparents...what's slowing you down? Accumulation? Hmmm, wait till you get older...oh, you ARE getting older...that's a good thing Martha! None of this goes away, and if some do, they are replaced by other hurdles in life. From what I gather, you got spunk...keep it up...so you're a bit tired, well, OK, a lot tired; you've won so far, keep winning...so saith Dirty for today's pep talk...you'll get it done, I have that feeling about you!

thaks i think i the end i was just frustrated from being on my on for too long, good to be back

[Roger]

I got very sick last Sept. with pain in my shoulders, arms and legs. I could barely get out of a chair and had trouble walking. I went to the ER at St. Joseph Hospital here in Tampa. They found nothing after two days and sent me home with instructions to see an internist. I went to see an internist the following Thursday and after a couple hours in his office being checked and blood tests, I was admitted to Florida Hospital. My internist called in kidney specialist who suspected immediately I had Wegener's. He ordered a kidney biopsy that Thursday night/ Friday AM. He also put me on kidney dialysis immediately as my kidneys were failing. Test results Monday showed I had Wegener's. After 28 kidney dialysis treatments and 7 plasma Pheresis treatments, I was taken off dialysis treatments shortly before Christmas. I am now off Prednisone and on Azathioprine 2.5 tabs per day. I still have not recovered my strength and stamina is slow too return. I'm eating better but have not gained back any of the 25+ lbs I lost. I'm 70 yrs old and have always been active riding Arabian horses and playing basketball until about a year ago.
I tell you my story hoping you will seek out a kidney specialist with Wegener's experience. The ONLY symptom I had was a sinus infection which is one of five symptoms per my renal specialist. My kidney function was down to only 5% and now I am at 35% and doing well.
Best wishes to you as you seek medical help.

[mishb]

Hi Roger and welcome to the forum.

Thankyou for sharing your story. I hope it helps others to realize that, it will take time, but things can start getting better.
It also shows that you need to be vigilant with your care.

[drz]

I got very sick last Sept. with pain in my shoulders, arms and legs. I could barely get out of a chair and had trouble walking. I went to the ER at St. Joseph Hospital here in Tampa. They found nothing after two days and sent me home with instructions to see an internist. I went to see an internist the following Thursday and after a couple hours in his office being checked and blood tests, I was admitted to Florida Hospital. My internist called in kidney specialist who suspected immediately I had Wegener's. He ordered a kidney biopsy that Thursday night/ Friday AM. He also put me on kidney dialysis immediately as my kidneys were failing. Test results Monday showed I had Wegener's. After 28 kidney dialysis treatments and 7 plasma Pheresis treatments, I was taken off dialysis treatments shortly before Christmas. I am now off Prednisone and on Azathioprine 2.5 tabs per day. I still have not recovered my strength and stamina is slow too return. I'm eating better but have not gained back any of the 25+ lbs I lost. I'm 70 yrs old and have always been active riding Arabian horses and playing basketball until about a year ago.
I tell you my story hoping you will seek out a kidney specialist with Wegener's experience. The ONLY symptom I had was a sinus infection which is one of five symptoms per my renal specialist. My kidney function was down to only 5% and now I am at 35% and doing well.
Best wishes to you as you seek medical help.

Be careful Roger. I found it only took a few weeks to regain my lost weight but then I added another 25 with the help of the prednisone (pregnantzone) that i can't unload even though it has been over three years since my diagnosis. Now it seems my belly bumper and i have become such good friends it doesn't want to ever leave me. I still take the pred (5 mg) and azathioprine though and insulin which makes any weight loss tough.

[Dirty Don]

(pregnantzone)

Is this drz humor?????!!!!! LOL! Good one!

[drz]

Is this drz humor?????!!!!! LOL! Good one!

It sure makes me look pregnant and that wasn't even listed as one of the common side effects.:biggrin1:

[Rini]

you guys are such good support! Is there a way for me to get updates on the threads I am following? I keep getting caught up in life and losing the conversations. Ok i did fail that math, I did try to retake it this summer and I was kicked out for paperwork enrollment problems. My current plan is to take a semester to focus on it and get the credits for my minor degree. I cant get this validated for a really long time but it would still be chipping at my to do list while falling behind in my program. I finnally got more chemical balencing drugs so I have less breakdowns and a supportive boyfriend who really understands how stupid I am at taking on more than I can handle. I think I have this stupid idea that I want to prove to myself the diagnosis dose not change me or hold me back? so I try to compeat with my valedictorian, over achieving, healthy friends? I am finding it is truly as stupid as it sounds. For the summer I have cut back to a few online classes and chiling by the pool with so much sun screen I look like I was dipped in glue.....(my boyfriends new policy after I came home looking like elmo last year.) I learned tattoos really do take 3 times as long to heal on drugs and that not all vegetarians are unhealthy. I have not learned how to sleep like a normal person yet but I have fewer nights up and working myself into a panic tizzy about everything under the sun. you guys are really supportive and truly the most calming thing I could ever find. Experience is the only way to survive.

[mishb]

There are some positives after all, in all of the madness :biggrin1:

I'm sorry that you failed you math class but I think you are now seeing a better picture.........a bigger picture.

You will get there. It will take some time, but it will be done.

This should be a new thread - what I have (or haven't) learned since diagnosis.

[Alysia]

Experience is the only way to survive.

Hi Rini,
that is fantastic statement. maybe you should add it to your signature.
everyone has some limitations. WG is introducing to us more vividly (and with cruelty) our limitations. but if we consider them, we can live more calmly.
take care of yourself :hug2:

[drz]

Hi Rini,
that is fantastic statement. maybe you should add it to your signature.
everyone has some limitations. WG is introducing to us more vividly (and with cruelty) our limitations. but if we consider them, we can live more calmly.
take care of yourself :hug2:

Great advice! It sort of reminds me of the old saw about whenever you figure out how to do something, some one seems to move the target. Learning to accommodate the ever changing limitations of Wegs is a never ending challenge. In the spoon theory we have to count out our spoon balance on an on going basis to see how it matches up with the spoon needed for the day.