Newly diagnosed weggie struggling.

[cerulean22]

Hello everyone. I'm sure that just like me when you all first found out that you were diagnosed with this disease, it just shattered your whole world. I was living on my own in a new city going to school and working a great job meeting new people and everything seemed possible for a young 22 year old male. Than the joint pain and aches in my foot and knee started kicking in getting worse and worse. I immediately quit drinking and staying out so late thinking i just needed to give my body time to heal. But everything kept progressing and on March 2013 the news was broken to me. I immediately went back to my parents to receive chemo and start on treatment. And luckily i recovered quickly and it seems to be in remission. People tell me im looking better and better each time they see me that im gaining back my weight (i was a sickly thin for the longest time.) but because of my immune system being down i still have cuts and scabs that take forever to heal and just make me feel ugly. My hands get dry and cuts appear easily. I have been using coconut oil to help, but lately my optimism has gone away. Im stressing about work because its a high demand job, im trying to move to a new place since me and my roommate haven't been getting along and thats always hard to figure out especially on a student salary and the anti depressants and benzos aren't working anymore. I have always had anxiety but lately it has been getting worse and worse. I have daily panic attacks, im always crying i just cant seem to see a point in living anymore except my parents and friends have been trying so hard to help me recover and get better so i cant betray them and let their efforts go to waste. But i feel like ill never be able to have the family i want. Raise a son to actually do something good for this world like my parents taught me, see him grow up, maintain a steady job (due to if a flare ever occurs since i already lost my last job due to my first flare up.) and just many other things. It's so hard to not try to drink the pain away and i have been doing good. But i just think im going to break soon and needed a place to vent. Im sorry for making this so long and i know all of you are going through just as much as i am. So please tell me what are things you have done to help with your psychological state? I am seeing therapist and psychologist, but its just not doing it. I dont want to keep pushing my problems on my friends and family even though they say theyre fine with it i just feel like im in such a bad place mentally that ill just drive them insane. I dont know what im asking for, i dont know what i need. Im just going out on a limb because i needed to let out some stress and vent. So thank you if anyone has taken the time to read this and give some input. It will be very much appreciated.

I just think its such bullshit when im a young healthy man who works out rides his bike everywhere eats organic and healthy and to have this **** **** my whole life up. Its ****ing bullshit that people who dont even care about their body live life fine with some occassional problems and anything serious is from them stuffing their faces with soda and mcdonalds and whatever drugs they want. BUT ME the guy who smokes weed eats healthy drinks only water juice and beer is now dealing with this ****ing disease. It makes me so angry that they dont even appreciate their health and continue to ruin their body. :predrage::glare:

[Dirty Don]

Cerulean, first of all...welcome to the absolute best place to discuss and learn about WG. 2ndly, too bad you have to learn about it at all. You remind me of myself somewhat, 'cept 40 years younger, and I'm not sure how I would have reacted at your stage of life...but your reactions sound reasonable! Really...Life's timing with WG for you sucks at best. Not great at mine either, but, well, you know the story at my age...hehe! Oh, before I forget, nice blog name...LOL.

Now, the reality of the situation...you HAVE to deal with it. Tho you can't beat it yet, you can do the things NOW as demanded to stay healthy...if that's what you want. At least you're young enough to perhaps someday see a cure...

As for your skin, that may be the drugs at work...not the disease unless it's another kind of ailment. Stress in moving AND dealing with WG works in WG's favor...stress needs to be reduced. Therapists and psychs are great for some things...maybe not a WG patient tho. I choose drugs over therapy myself...but have already done therapy before and figured I knew as much as they were telling me...it's about getting things done, not describing them (see my signature).

So, again, welcome! Please ask any and all questions, continue to vent, and contribute things you learn. There are many nice and knowledgeable people on here...we all want help and to help...the best to you!

[NikkiNicole]

I know all about feeling like the world isn't fair. My husband used to smoke 3 packs a day, drinks like a fish, eats like crap ... yet I was the one with the dual diagnosis of cancer and wegener's. How does that work??
I was working out 5x a week, eating right and looking forward to this awesomely bright future. Now, I wonder if I will be able to have children or do any of the things I planned. I have yet to feel well enough to return to exercise. It sucks.
Vent here. It's the only place you'll find people who know EXACTLY how you feel. Even my doctor doesn't get it.

[Alysia]

Hi cerulean. I like your name.
I understand your fears, rage, hoplessness, helplessness, stress, agony, wondering, depression etc. I feel them myself from time to time. but not always, thanks God, otherwise it is crazy to live.
it is great that you vent here. do it as much as you need.
there are very kind people here. they helped me a lot and still are.
only a weggie can realy understand another weggie.
about handling your life: maybe you have to sit down and rethink how do you want to live your life now that you have WG and what way do you have to make it.
Im going many years to psychologist and she helps me a lot. sometimes I even feel my symptoms are less after a session.
since Im clinical psychologist myself I know that there are a lot of orientations, some of them doesnt help as Don wrote. some do help, as I know. check with your psychologist. if he is working with CBT (cognitive behavioral therapy) find yourself another one. better someone who is doing psychoanalysis with the orientation of DW Winnicot.
any way, keep writing. things will get better :hug2:

[Alysia]

I know all about feeling like the world isn't fair. Even my doctor doesn't get it.

Hi Nikki, how are you? something new with your treatment?

[drz]

Cerulean is right in that life is not always fair. Usually that is in our favor when you think of all the poor people living around the world and how lucky we are not to be starving in some oppressed zone, but it does suck when you think of how good some people have it and don't even appreciate it, especially those with good health who abuse their body. Cerulean is in a tough spot like many others here. He seems to be trying to manage things and doing what he should do to cope with it just like most of us.

Wegs can cause skin problems. Here is quote: In the NIH study, skin lesions, including palpable purpura, ulcers, vesicles, papules, and subcutaneous nodules, were observed in only 13% of patients at presentation, but eventually affected 46% of patients.2 This is from the web site on GPA I posted before:
http://www.gpa-mpaclinical.com/patient-presentation/granulomatosis-with-polyangiitis-symptoms
Learning as much as you can about GPA and its treatment can help you manage it better.

Platitudes don't help much when you feel stressed to to the max. If you are still on pred like most of us it helps to know that pred has an adverse affect upon your emotions and moods. Residual symptoms often remain even if you are in a remission, drug induced or otherwise. All meds have side effects. We take them for the good effects but have to accept and recognize the undesirable ones too. For most of us it is the cost of staying alive or trying to maintain a better health than we would have without them.

Some where in the long past I posted a thread on words that helped me initially cope with Wegs. Hopefully you will eventually find that usually things get better with treatment but there are ups and downs along the way and nothing lasts forever.

One thing that helps me is to practice gratitude. This came easy at first when I was over joyed just to find out I was going to survive it after all, at least for awhile. I was just delighted to get a second chance at life after months in hospitals and even longer period of recovery in a nursing home. I was the only one who ever left my unit at the nursing home and got out to live in a more independent setting (light assisted living facility where I am mostly independent in my own apartment). Adjusting to a new "normal" is tough, especially when you don't know what it is or what it will be. The good news is that once you learn to manage your tough situation, you will be heads above your peers in maturity and ability to manage tough breaks. It is tough that you have to acquire such wisdom at an early age. You have found a good resource though to help ease the burden on your family and friends who care about you but aren't in your shoes. Glad you found this forum and hope you can also take advantage of the the help and support we have found here.

[mishb]

Hi Cerulean and welcome to the group.
We are all so glad that you have found your way here.

It certainly is not an easy road to travel, but we are all here to make the journey with you, for you or easier on you.

The replies you have received, so far, are from people who have lived and breathed WG for quite a while now.
Take some time to read through some different threads and I hope it can help you see some light at the end of the tunnel.

Pete has just climbed Mt. Rainier, Cindy has climbed Everest and has just put her application in for her 2nd Iditarod and we have young ladies who are currently pregnant and some that have just had children and others who, like you, are hoping to have children in the future.
This is not the end of your life - this is just a new twist/turn in that road.
Three steps forward and two steps backwards, most of the time, but you are still continuing onwards.

Take care and ........

[Dirty Don]

"Pete has just climbed Mt. Rainier, Cindy has climbed Everest and has just put her application in for her 2nd Iditarod and we have young ladies who are currently pregnant and some that have just had children and others who, like you, are hoping to have children in the future."

Hey! HEY! I golf and drink coffee...and make smart remarks...LMAO! Must be the pred...

[mishb]

"Pete has just climbed Mt. Rainier, Cindy has climbed Everest and has just put her application in for her 2nd Iditarod and we have young ladies who are currently pregnant and some that have just had children and others who, like you, are hoping to have children in the future."

Hey! HEY! I golf and drink coffee...and make smart remarks...LMAO! Must be the pred...


Sorry Cerulean.......we also have Don who plays Golf and drinks coffee and makes, oh so many, smart remarks.

Sorry Don, I didn't mean to miss you out :flapper: :rolleyes1:

Cerulean - I think you get the picture :wink1:

[cerulean22]

I am so sorry you have to deal with two such horrible illnesses :( i wish i could give you a hug. It sucks especially when your with someone who treats their body so horribly but yet is in better shape than you.
Best of luck to you!

[Barbara N]

Welcome to the group. I see you have already had a lot of good advice. I found out I had WG when I was in hospital having my nose and jaw repaired I literally spent years in surgery, 34 in 8 years, and every time they would finish and things looked great a few months later it would all start to disappear. Now I basically have no face . I had the hearing problems then lost my sight for a year but now I ride my horse and she is the best therapist I know and keeps my physically fit. You must find a hobby, something that you really enjoy or you can start feeling like there is reason for living. You just talked to a lot of people in your situation or at least similar and not one of them was down and depresses we have mostly learned how to live with WG. Once you get your meds right you will start feeling better. You will always have good and bad times but learn to enjoy the good time and find a way to cope with the bad. of luck to you, it is a hard change to make in your life but it can be done.

[annekat]

Hi Nikki, how are you? something new with your treatment? I was wondering the same thing!

[annekat]

Welcome, Cerulean. Others have said the important stuff, but I am glad you are here. You can say or ask anything here, and it is the best possible resource for those of us with WG. There is a huge variety in the experiences the people on here have had. You are basically young and strong and can get through this. People on here have gotten WG at about your age and then gone on to be in remission for decades. The older ones of us may not have decades of remission but most of us have gotten enough control over the disease to have very good levels of quality and completeness in our lives. The worst is when you are first being treated and don't know what to expect or how it will go. But believe me, it will get better.