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cherS
03-31-2014, 11:08 AM
:w00t: I found I had Wegeners last year 3 months latter my Hubby died now Im alone and trying to deal with this disease. I am afraid

NikkiNicole
03-31-2014, 11:36 AM
You have come to the right place. While we aren't doctors, there are hundreds, if not thousands, of people on here in various stages of Wegener's who can give their own advice based on what they've experienced. You'll find people who have fought back from certain death, to those who have just started to face the very tip of the Wegener's iceberg. Each and every one of us in united in our battle against Wegener's. We come here to vent, to scream, to cry, and to reach out to one another.
I am sorry to hear that you are going through such a horrific time. My heart goes out to you. Please feel free to unload your troubles, tell us your Wegener's story, someone on here is bound to have experienced something similar. (again, there are thousands!)
Welcome to our family, it's unfortunate that you have to join but we are glad to have you.

Dirty Don
03-31-2014, 11:50 AM
:w00t: I found I had Wegeners last year 3 months latter my Hubby died now Im alone and trying to deal with this disease. I am afraid

Hi cherS, sorry about your loss, certainly complicates things having WG also, for you. But, do not be afraid...watchful and concerned, yes...but no fear. Don't know where you are in AZ, but you have Mayo in Phx nearest for you. I go there now, I live in Surprise AZ, Mayo has a good concept of what WG demands and has kept me on my feet for 2 1/2 years now. I'm 65, active, in reasonably good shape...shut up everyone!!!!...I golf, whaddya want!? Anyway, sorry...class clown is creeping out tonite...ignore my weirdness...and with Mayo's help I have gone thru the fear, the denial, and finally the fix up phases...I'm kinda now at the full acceptance stages of WG is forever with me now. And it's OK...as long as one has good docs (WG aware/enabled/experienced), some kind of support system, and one follows the correct protocols correctly...lots of fortitude and patience cherS...best to you!

windchime
03-31-2014, 02:01 PM
Welcome to the forum Cher. I'm sorry to hear that you've had such a devastating loss and been diagnosed with this disease all within such a short period of time. It's natural to feel fear when faced with what you are facing. Do you have any family or support system to help you cope with things? This is an excellent support group full of loving, sensitive people. Here you can ask any question or share information or just post your frustrations with whatever. We all understand. There is a wealth of information in the archives. If you haven't started reading some of the older posts you should. It will help you understand the disease better and give you a better perspective when reading other peoples stories. Please feel free to share more of your story, how you were diagnosed, what meds you are on and your journey here when you feel like it. We would like to know you. In the meantime hugs to you. :hug2:

Alysia
03-31-2014, 05:29 PM
dear Cher,
I am sorry for your loss. must be though :crying:
having WG is scary but you are not alone anymore. we are with you, so it is going to be less scary, sometimes even funny, especially when Dirty Don is around :wink1:
what meds are you taking ? what are your synptoms ?
continue to write. it helps. hugs :hug2:

annekat
04-01-2014, 05:59 AM
Welcome, cherS! The above posts have pretty much said it all. But I'm so glad you found us and only wish it could have been sooner. This is a very hard disease to be alone with, and here, you will not be alone. We understand and are here for you. Please continue to write, say as much or as little as you want, but hopefully more.... Ask whatever, blow off steam, share interesting stories, the list goes one. Hope to keep hearing from you, and maybe you live close enough to Don for a face-to-face visit.

renidrag
04-01-2014, 07:55 AM
Welcome CherS , indeed there are all realms of WG here. From the newly diagnosed to, well ,me. I am not the standard but have reached drug free remission for three and a half years. There is hope. Plus you will make a lot of new friends here that understand.
Dale

cherS
04-02-2014, 05:11 PM
Thanks for all the support. Mine started with sinus problems I went to anENT and he was aware of WG and sent me to Univ of NV There I was started on prednisone. I have had a wild ride of finding any Doctors that had a clue but now I have a very caring Dr. I am now off of the pred and was taking methotrexate which did not help. Now on cyclophosphamide. Starting second month I dont feel great but can drive and do a few things around the house. I lost hearing in right ear and some loss of sight in right eye. Tried cataract surgury but did not work. Also have neuropathy and carpel in both hands. I take lyrica and it helps the pain. I cant get around much and that makes me sad so I watch alot of TV and do things on my computer. So thats my tale of woe!!

Dirty Don
04-03-2014, 03:03 AM
Not woeful, sounds like many of us!!! It's the new normal as some are fond of on here...better than the last chance!!!!!! Glad you have a doc who is trying hard...but there may be consultations available if the doc is willing thru the Vasculitis Org. The drugs take about 5-6 weeks before they are effective, so be patient patient! The neuropathy, for many of us, goes away or at least recedes somewhat...I still have some in left foot, but had it in both legs and feet at first...massage helped a lot. Carpal tunnel seems to be a mistaken dx that occurs somewhat frequently when it is actually the 'roaming' pains of the WG symptom presentation. Keep at it, keep getting info, keep asking questions, and you'll get back to where you want to be. Best to you!

windchime
04-03-2014, 07:48 AM
I'm also on Cyclophosphamide and it makes me feel bad also. I've been on it since Nov 30th and should be getting off it soon. Fingers are crossed here. Good luck with it and if it becomes too bad maybe they can reduce your dose or there are other meds besides the CTX and MTX. Hugs to you. :hug2:

mishb
04-03-2014, 10:36 PM
Hi cherS and welcome to the happy little WG club.

I guess your WG could have got a little worse after the death of your husband. I am so sorry for your loss :crying:

Stress is a terrible thing and can make the symptoms worse :sad:

Don is right, it is not a tale of woe. Off pred already is an incredible feat in itself......good for you :hug3:

rif
04-03-2014, 11:59 PM
Hello cherS

My sympathies on your loss, you will never be alone now you are a member of this forum.

Rif

ingemlb
04-06-2014, 09:06 PM
So sorry that you have to do this alone cher. My husband is such a support to me I can't even begin to imagine if I had to manage on my own. The stress of your loss wouldn't have helped your illness either.

Glad you found this forum. I am new to all this too. I was diagnosed in January this year and found the forum straight away and that was good as the people here kept me sane. I was totally freaking out when I started to study up on this nasty disease. But also it was a kind of relief to finally have some name to blame for all the weird things that were happening in my body!

don I never realised Carpal tunnel could be Wegener's related. I have struggled with that from time to time for years in my right hand. Come to think of it many of my joint issues seem to be on the right side of my body :( Luckily the carpal tunnel comes and goes and doesn't last too long but when it hits the hand i useless.

In the left wrist I have a ganglion cyst but that is without pain. Hm... just took a look at it. Seems to have shrunk considerably. Wonder if that's thanks to the Pred?

Re the Neuropathy it was reassuring to hear that this passes too :) First time I heard that. I have it in both feet and when I had the nasty flare in January prior to diagnosis I also started to get severe pins and needles. Prior to that the Neuropathy was pain free and the only symptoms were patchy numbness in both feet. However the pins and needles feeling seems to be improving as well.

One thing I found out early on is that the Pred can play havoc with your brain as well. I am seeing a Psychiatrist due to getting panic attacks, anxiety, "racy mind" and insomnia. Funnily the insomnia was ok for a few weeks but has suddenly returned with a vengeance. It's quite nasty. I am dead tired but can't fall asleep :( Seeing my Psychiatrist tomorrow hopefully he will help me with something before I pass out from exhaustion :(

Keep posting and reading cherS you will definitely feel less alone now :) All the best.

mishb
04-06-2014, 10:38 PM
Inge mine are the same.

All symptoms are on my right hand side - deafness in ear, red eyes (worse on the right), right hand, elbow, shoulder, knee calf and ankle.

I also have a ganglion cyst on my left wrist and a ganglion cyst on my right ankle.
My rheumy said that these are common with vasculitis. Does anyone else have these?? (also called bible bump/cyst)
The cyst on my left wrist has gone down considerably since diagnosis and medication (I also think the pred was responsible), however the cyst on my right ankle joint is still large.

Dirty Don
04-07-2014, 02:12 AM
don I never realised Carpal tunnel could be Wegener's related. It's not so much related as it is a mistaken dx when the roaming pains are occuring. My wrists, ankles, shoulders all hurt during my first flare and I just couldn't figure it out.

renidrag
04-07-2014, 02:20 AM
I had two ganglions, one on my sternum and one between middle and ring finger. Shaking hands was very painful, to the point that I had to put out my left hand. Both disappeared with prednisone, Sternum one seems to be coming back but fingers are ok.
Dale

cherS
04-11-2014, 11:54 AM
Thanks for support. I am in Bullhead city across river from Laughlin but am trying to buy a small condo in old Sun City. Maybe when that happens you can give me advice on some Docs in the area. I am going to look into Mayo clinic my friend in Scottsdale has been on me to move and go there.

ingemlb
04-11-2014, 01:39 PM
Interesting about the Ganglion cysts !! My left wrist is almost flat now. so goes to show if it reacts to the pred must be connected. Wonder if the same is true for bakers cysts in the knees. I was diagnosed with those in 2011 and the Orthopaedic surgeon on examining my right knee the other day found nothing of consequences. I.e. no bumps or inflammation. Guess the Pred is cleaning it all up. Maybe I will stop getting so mad at the pred LOL for the weight gain.

So if the Ganglion Cyst and the Carpal Tunnel are all Wegener's related goes to show I have been having symptoms for many years!!!

mishb
04-11-2014, 10:15 PM
I went to my GP about this squishy lump in my left wrist in my late 30's.

She asked me whether I had any other symptoms/conditions - my reply was "Like what"

She said that she couldn't tell me what symptoms but if I didn't have anything then I was fine and all the lump is - is a ganglion, and if it doesn't go away on its own, it can be drained. Looking at it now whilst I'm typing, it is nearly flat. Is that as a result of pred or as a result of 'it will go away on its own' !!?

To this day, my husband and I still wonder what the other symptoms were that she was wondering about - maybe I could have received a WG diagnosis even earlier

ingemlb
04-11-2014, 10:32 PM
Strange way for a doctor to go about it Michelle. You would have thought she would at least ask specific questions. We get so many symptoms we learn to live with that we don't consider as symptoms in the end. Like I knew I had post nasal drip but it NEVER occurred to me that it was causing this nasty cough. So when I saw my GP about the cough I wouldn't mention my sinus issues. Had he asked me I would have remembered and said, yes I have post nasal drip :(

Because the carpal tunnel was only spasmodic it was another one I never bothered to investigate. And the only thing I did about the Ganglion Cyst was show the GP and get a name for it. After that I never mentioned it again.

Anyway. Not sure if an earlier diagnosis would have helped a great deal?

Bed time for me. Eyes are droopy so I better take advantage of this feeling of tiredness before I get a second wind going :) Night Nigth.

pwc51
04-12-2014, 04:40 AM
Just for fun (sorry business) I am heading to Phoenix for a few days towards the end of April!

Lilly
04-12-2014, 02:09 PM
Hi cherS, I am so sorry for your loss. I can understand your fear on top of the loss of your hubby. It would definitely make me afraid too. I just finished reading all the different advice a lot of the weggies have given you. Its great to have so much support, and I am sure you will feel so much better just reading about all the others and what we have gone through and are going through. You can get on here and cry, scream, be completely honest without the fear of being judged. We are all here for you, as so many have told you. This site has changed me. I know it will help you. I am thiking about you, and will be checkin in on you.......we all really care. I hope you are getting less afraid, take care.......blessings to you, and talk to you soon~

cherS
04-12-2014, 03:03 PM
Thanks Lily, Im trying hard to find some peace. I am heading for Phoenix tomorrow to visit my friend. Im also looking at condos in Sun City hoping I can move closer to her and a year alone in the house where my Hubby passed is enough. My dogs and cat are looking for a fresh start. Hopefully next week I may have a new abode!!! Here in Bullhead City I don't know anyone. And frankly havent been impressed with any of my neighbors. The couple we knew here passed away and its not a very easy plase to make friends. I think Sun City will have older people like me and maybe I can start swimming again. I have come to terms with my disease and now it is my friend I share this body with lol. Im up for an adventure!!! Makes me feel useful again. Wish me luck and will be back later in the week with my findings. If anyone knows good WG doc in Phoenix area let me know. God Bless and lets all keep our chins held high and our hearts with God.

cherS
04-12-2014, 03:06 PM
Ill be back in Bullhead City by then or we could do lunch. LOL

Lilly
04-12-2014, 04:17 PM
Wow cherS, you sound like you are doing a lot better! You are ready for a change, and you are doing it! You have your pets, which if you are like me, they are your babies! I know your friend is excited you are moving closer to her! And I love the way you say wegeners is now a friend you share your body with! So funny and such a great way to look at it! I Love it! I wish you luck, and look forward to watching you grow, and be able to live with this disease, but still do things you love, like swimming. A change sounds like just what you need.......and I cant wait to see how it all works out. Im sure you will have ups and downs, as we all do, and that's what we are all here for, to share the joy, the tears, and any emotion and changes you go through. God bless you and Im so glad to have you with us! Take care~