Ellen Weggies story

[kieshara]

Yes i read several of your stories and realised that mine is the same. I was dign in 2010 after being sick for two years. Cronic sinisitus and neuralgia on the left side of my face. Before that Schingles right abdomen and left side of my face. I went to the .GP every week telling him I dont feel well, but did not no were. I went so far as to tell him maybe it is up in my head. Being n old nurse and not a person easily getting down he said no. I saw that my nose was tipped to the left side of my face thinking i always wiped it to the same side with the pain in my face. I went to the ENT guy who said he will take me to theatre and do biopsy of my sinus I refused any other procedure he promised to only do that and a washout. After the op he told me that my nose is very sick. I went home to wait for results. A week later he phoned and said i had this rare Wegener's and have to be admitted for treatment. I went to hospital had grams of cortisone and started on cyclo phos. When i walked out of hospital to the car i said to my husband if i was not sick i am now. My legs felt as if there were no blood in them i was so weak .The next six months at home was hell. I never imagine that you could be so weak and tired. I saw my phisitian pulmonoligist every month or more After one month i was back in hospital on antibiotics tons of it. Back home hell goes on. After 6 Months i went on Imuran and still on Cortisone. Going regulary for bloods x rays scope of my larynx that was one of the first simptons weezing there the Wegs was on my vocal cords. After two half years I went on maintance 10mg cortisone and 50mg Imuran. Of course now i have a Tagicardia of 128 high blood pressure Lesions on the skin, all the side effects of this horrible disease. Now it is more tablets 10 or 12 a day hope they all knew were to go""" Then it is washout of your nose every day otherwise it gets infection You wake up and think ye i feel great today put your feet on the floor and no you not great weak weak. I read a book that a dentist wrote that the mercury in the fillings is so bad he was convinced after 34 years that it caused auto i'm diseases. My gums was another problem away from my teeth bad taste in my mouth so i went to the dentist told him about it he said i will be 40% better if my gums are well. Had dentures top so i had the bottom 11 out in the chair waited 3 months and got the bottom dentures, another story to get use to. But in 3 weeks my general health felt so good I drank Rooibostea and honey my mouth healed in record time. In Sep 2013 i walked nearly 2 km resting but i could not get to the driveway before. I got home phoned my phisian and said. Dr I feel so well write it in my file. two weeks later i woke-up not so good, weezing short of breath, went to my GP he said nothing in your lungs an obstruction in your larynx. I was so disappointed. Bag to the big DRs Scope yes n narrowing was there back to hospital broncho scope MRI lungs bloods x rays ultrasound of my neck name it i had it and....a Angiogram arterys like hoses cant find anything wrong but... i am still short of breath cant shower, rest hang the washing, rest, cook, rest it is so frustrating i am not sick but i can do very little moving around legs don't want to walk. This was last week, my GP suggest i try a inhaler with cortisone i rushed out got one inhale and ye i felt better but this morning after using it no better i read the pamphlet wait four days for full results so there is 3 more days . Dr told me to there is an operation cutting out the ring or do a permanent trachy. Big stuff to live with. I always said if you no to little of to much {like we nurses do)... not nice. I am 63years old, and feeling old because of restricted movement. I use to help people now i am depended on my family and i always say everybody is sorry for the pasient but i am sorry for the carers, it is tough on the family marriage friends yourself. It just seem that the medical world is stunned by this disease there hands are tied so little meds that it is treated with. and each pasient is different. It steals your live. I just want to say to all you out there we have got to hang on.

[chrisTIn@]

Hi Kieshara (or is it Ellen?),
Welcome to the forum.
You can find lots of information here, and share your experience with other patients.
You endured a lot yourself, and feeling 'old' because of restricted movement is something Weggies of all ages will recognize.
Still it's the only way to feel better eventually. Do something and then rest.
Take as much rest as you need and you can afford, and in the end you 'll feel better, when you adjust to your new lifestyle.
Hang on indeed!

[kieshara]

Hi Kieshara (or is it Ellen?),
Welcome to the forum.
You can find lots of information here, and share your experience with other patients.
You endured a lot yourself, and feeling 'old' because of restricted movement is something Weggies of all ages will recognize.
Still it's the only way to feel better eventually. Do something and then rest.
Take as much rest as you need and you can afford, and in the end you 'll feel better, when you adjust to your new lifestyle.
Hang on indeed!
you could say its both .... my mom wrote it and i posted it for her... she went to lay down now... coming up stairs is kinda making her out of breathe... and she does alot of knitting, smocking and all that stuff for who-ever ....

[chrisTIn@]

Welcome mother and daughter then!
So your mother's name is Ellen, and you are Kieshara, right?

It's good that she went to lay down, wish her all the best.
Very sweet of you to help your mother with the 'digital stuff'.
I have a twentyfour year old daughter myself, who is very good with internet,
and she sometimes finds the time to tell me some of her little tips & trics, from which I benefit a lot! :wink1:

[kieshara]

Welcome mother and daughter then!
So your mother's name is Ellen, and you are Kieshara, right?

It's good that she went to lay down, wish her all the best.
Very sweet of you to help your mother with the 'digital stuff'.
I have a twentyfour year old daughter myself, who is very good with internet,
and she sometimes finds the time to tell me some of her little tips & trics, from which I benefit a lot! :wink1:

kieshara is my internet name... not my real name

karin is my real name.. and yes my mom's name is Ellen :D

[windchime]

Welcome Ellen and Karin,

Sorry you had to find us, but glad you did. There are many caring, helpful people on the forum that are available 24/7. The site also has a lot to offer in the archives if you get a chance to look at them. Feel free to ask any questions, vent, or just share your experiences.

I understand the feeling of being old before your time. I also have a lot of shortness of breath. Taking a shower is a challenge as well as other activities. Is it possible they could do a dilation in your throat instead of a trach? A trach seems to be a very invasive procedure. Maybe you can get a second opinion and see if another doc may have another solution. What kinds of docs are you seeing and which one recommended the trach.

Good luck to you and stay connected with us and let us know how you are doing.

[annekat]

Welcome, Ellen and Karin. I'm glad you are here, if WG has to be a reality in your lives. This site has been a sanity saver and maybe even a lifesaver for me. I hope you will find it to be the same, and that it will bring you comfort as well as information and support. It can take quite a few months to get over the bulk of the fatigue... and we will probably never be back to our "old normal".... well, I guess you know that, as I see you were diagnosed longer ago than I was. I see you have had more ups and downs than I have. I'm sorry about your tracheal problems, which add another dimension to the ordeal of WG. I would not like that breathless feeling and the lack of energy that results. It is interesting about the mercury dental fillings. I had those replaced about 9 years ago, before I ever was sick or knew anything about WG. In any case, I hope there is a light at the end of the tunnel for you. Things CAN get better. Please continue to share your experiences and ask any questions, use us as a sounding board for rants, etc. That is what we are here for. I wish you the best, for the right decisions to be made that will make your life better. BTW, I am 61 years old.

[mishb]

Hi Ellen and Karin and welcome to the best forum to hang around at :thumbsup:

Thanks for finding us for your mum Karin.

Ellen, I hope things start to improve for you so that you can continue doing the things you love, without all of the fatigue.

Anne is right, things CAN get better ........and they will

[Alysia]

welcome Karin and Ellen,
Long and tough way :crying: but I hope for you that things will get better. usually they do.
you are blessed to have each other and that is a source of power for future recovery and for surving the tough moments.
and now you also have us to hold your hands all the way.
as Anne wrote above: this forum is def sanity and life saving. for me2.
please continue to write.

[kieshara]

i am so short of breath too, mine happens the moment i put my feet on the floor to do something.Walk washing shower, then when i rest a while usualy sitting down and do needlework i feel fine. After the hospital 2 weeks ago and all the test neg, i went back to my GP and told him that i dont look forward to this kind of life, he spoke to the ENT again and they decided to give me an inhaler with cortisone and antiinflam to use three times a day, I went and got one and used it , I felt relieve inmediately, and was so glad, but the next day and now into the 7th day no relieve. I read the pamflet said about 4 days I am still pos that it might help. My pred is down to 10mg again and now the arthiritis is worse again, you just cant win. I have still another option. We live at the sea very hot and humid. My kids have landed this morning from the U.K permantly back and we are going to them in a week or so, there it is inland hot dry, i might just breath easy there who knows. I never get colds or flu, i always say i only get illnesses that stay for years no 7 day bugs for me. I found it difficult sometimes when i dont feel well, is it the Weggs or just something passing, cant run to Dr with little things, or that is what i sometimes think. I seem to have forever a septic focus, my eyes are a big problem as the Wegg damaged my tearducts, then my lower eyelashes decide to grow inwards, then it is a toenail suddenly for no reason, what an irratation, at the moment i have lower abdominal cramps coming and going for no reason. Hang in there

Ellen

[Alysia]

Hi Ellen. in time you will feel better. I am not sure which climate is better. I find the sea air good for me. it is also important to live close enough to docs and labs. hugs :hug1:

[windchime]

Ellen perhaps your predisone is too low if the pain has come back. Also ask about getting a nebulizer. That makes medicine into a mist that you inhale. It helps open up your lungs which in turn helps you breath. I don't know if these will work, but they're worth a try. I too have breathing problems and get short of breath doing anything. I'm on 25 mg of pred and when I try to go lower my breathing becomes worse. Hugs to you. :hug2:

[ingemlb]

Hi Ellen and Karen. I only joined the Forum a few weeks ago when I was diagnosed with Wegener's and I must say without it I could not have coped. I am still struggling but it's so good to have so many people who understand what we are going through and are so willing to share of their time and help each other. Inge :)

[kieshara]

i will let my mom post here agian..... today sometime...

[Jayne 14]

Welcome Ellen & Karen
This site has helped me so much . Kindness & help from all
Xx


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