Not getting better

[NikkiNicole]

I really thought I was getting better after this cold. I felt even more run down than usual but I knew I needed to just get through it. However, after taking my new dose of meds, something isn't right. I am sliding backwards.
My brain feels fuzzy. I'm dizzy and not quite sure if this is nausea or what. My mouth itches. My dog slammed into my nose, which hurt but I didn't think it was THAT bad but when I did my sinus rinse it was nothing but blood. Not sure if my dog knocked some of my scabs loose or what. And now, I am getting completely congested again. The sneezing is increasing, the coughing ... I should be much better than this by now.

I almost didn't come to work. I felt very ..... all I can describe it as is weird. Not right. Not normal. I feel like my eyes are crossed (they aren't), I feel like I desperately need to lie down. My head hurts, but it's soooo weird and fuzzy. LIke I can't think ...

I promise you all, if I am still off tomorrow I shall stay home from work.
:blushing:

[gilders]

Oh Nikki I really feel bad for you. After 19 years of living with WG I still get worried that my cold could be the start of a WG flare.

I read your blog today. Strange how we have a few similarities.

Your love of Disney - I love it so much I proposed to my (now) wife. I don't tell everyone as I guess it was a bit cheesey (hope you have that expression in the US), but as you're a Disney fanatic I'll let you know. I went to Cinderella's wishing well and we both tossed in a quarter. I then said "aren't you going to ask if my wish came true?". She said, with a slightly puzzled look, "OK then, has your wish come true?"
At this point I replied "I'm about to find out"
Another puzzled look from her until I revealed the ring and said, "Will you marry me?"

Your electric issues at home - Last week our light dimmer switch had got so hot it melted and turned black. Nearly an house fire in the making.

Needing a fence for your dog - We moved house a few years ago while I was able to work. We only had a 2 bedroom for us and our 3 boys. At the time the boys were 14, 12 and 7. It wasn't really feasible for the eldest 2 to be sharing with our youngest. As we were needing an extra bedroom and after all the legal and estate agent fees we couldn't afford to buy a house more expensive than the current house. Moving to a less desirable location was not an option for us, so we ended up with a house with no garden. The kids never used the garden at the other house so it was a good compromise. When I became to ill to work I got a dog for company. Now we have a similar problem as you no fenced garden for the dogs (we have 2 dogs now)

Needing a relaxing vacation - This is what I live for. I spend most of life sat indoors. I used to love active holidays (Disney from opening until closing), but now I have little energy, so relaxing by the pool at a villa is what I do now (mostly Spain as it's relatively inexpensive and not far from UK so insurance isn't too expensive)
The picture (if it has appeared) is the view from the villa we rented in July, absolute tranquility.

[NikkiNicole]

I am so happy to have met a fellow Disney fanatic!!!!! And yes, cheesy is definitely a phrase used here in the US. I use it a lot because I am cheesy as can be about a lot of things.

Your proposal story is wonderful. How very romantic and special and .... I am just all warm inside about it. I would have loved that. Disney is about fairy tale happy endings and dreams coming true. How perfect!!!!!!

I am sorry to hear you are having some of the same issues. It's a darn pain in the rear to be an adult, isn't it? I am lucky in my case to be married to an electrician. Of course, he's very busy with work so ... that project will remain as it is for the time being.

I am not as bad off with my Wegener's as others. I am one of the "lucky" ones, if you can call it that. I had an excellent doctor who decided to look into this and caught this WAY early. So, I almost hesitate to come here and whine and worry about what's going on with me. I just know how quickly things can go from good, to bad, to worse and ... I want to stay ahead of this monster that I've not inherited.

There was no picture so I couldn't see your villa. I am beyond jealous that you are over in the UK. I want to move to London SO bad. Maybe not necessarily London but definitely somewhere near London. When I do get the chance to do some "dream travel" I want to go to Europe because of the close proximity of SO many things. Until then, I'm stateside, dreaming of being across the pond!!

I hope you can have another relaxing vacation sometime soon.

[gilders]

Hmm. Not sure what I'm doing wrong. The progress bar fills up when I upload the pic, but then nothing happens?
I was in London a couple of weeks ago to see my sister, bro-in-law, nieces and nephew. I went to my nephew's christening in Ireland 2 months ago, my cousin live sin Cardiff (Wales). we spent our anniversary in Llandudno (Wales) and next month we're visiting Scotland. Don't think I've ever done the all the UK in such a few month before.

I think where I live is much nicer than London (Yorkshire). BUT it is so darn rainy here compared to London.

[NikkiNicole]

I like rain. Love it actually. We are entering my favorite time of year here in california! It's all overcast and threatening rain outside and I am very happy inside. Of course, this isn't normal September weather but I'll take it. I love the autumn and winter. People call me crazy. I'd love to move up north to the Pacific Northwest if I have to stay here in the States.

I am so jealous of your recent excursions!!! I would love to go to Ireland and Scotland. I am part Irish ... mostly English and even Native American. So ... I am rooted here but my family comes from over there! (I've been doing some geneology)

[Wegetarian]

Darn sorry to hear you are feeling bad again :( Definitely sounds like you need a few days of rest.


I would love to go to Ireland and Scotland.

A quick heads-up for you and gilders, there is a cabin in Scotland that I understood vasculites can rent for free:
https://www.facebook.com/twilightcabin/info

From my understanding its about 2.5 hours drive from the nearest airport. Looked at the prices and I guess for our family it would cost about 1k euro for the flights + car rental so not too cheap of a vacation but it would be nice to see Scotland. A forefather of mine comes from there :)

[gilders]

Thank you so much for posting about the log cabin. As soon as my wife gets home from work we'll decided on a date to see if it's available.
Such a shame I can't bring my dogs, but I understand why they're not allowed.

[Wegetarian]

Really glad to help! It should probably be added to some relevant section of the forum stickies so that people can find it easier. It was Jim who mentioned it in the Vasculites FB group (I really recommend joining as he posts a ton of new links there, I usually steal the most interesting ones and share them here though).

I think the reservations started from January and onwards, but it might ofc be a good thing to try to get a reservation early so that you get a suitable time. Do remember to post a trip report :) I hope you will have a great time!

[gilders]

It really is wonderful for people living in the UK. It's so hard finding affordable insurance for trips abroad and there's always the risk of not being well enough to travel. UK cottages and cabins tend to be very expensive to rent compared to my usual destination (Spain), so this is a real treat.
Hope I can find some availability which coincides with time that's available for my wife to book off work.

[Wegetarian]

Great to hear like its going to be of good use for you! BTW, I'm glad to see you have become so active at this forum :) Glad to have you around. You do seem to have a lot of insight on the disease, besides being one cool & tough mofo :)

[Barbara N]

I really thought I was getting better after this cold. I felt even more run down than usual but I knew I needed to just get through it. However, after taking my new dose of meds, something isn't right. I am sliding backwards.
My brain feels fuzzy. I'm dizzy and not quite sure if this is nausea or what. My mouth itches. My dog slammed into my nose, which hurt but I didn't think it was THAT bad but when I did my sinus rinse it was nothing but blood. Not sure if my dog knocked some of my scabs loose or what. And now, I am getting completely congested again. The sneezing is increasing, the coughing ... I should be much better than this by now.

I almost didn't come to work. I felt very ..... all I can describe it as is weird. Not right. Not normal. I feel like my eyes are crossed (they aren't), I feel like I desperately need to lie down. My head hurts, but it's soooo weird and fuzzy. LIke I can't think ...

I promise you all, if I am still off tomorrow I shall stay home from work.
:blushing:

I have felt all weird and dizzy even stumbling around like something in a cartoon and my short term memory is gone. My vision is bad and I have trouble with the calendar and dates and places. I feel really stupid. They gave me some tablets to take 3 times a day to see if that straightened it out.So far it seems so be working and I have only been taking it for 2 days. the doctor might be able to shed some light on it on Monday when I go to Madrid. I can't be out of it and control over 600 kilos of muscle, I have to keep it together to ride such a large and powerful animal.

[pberggren1]

Nikki, maybe you need an antibiotic. I had a throat infection last week that started the week before and was not going away with my methods so I just called my doc for some Cephalexin and picked it up 15 min later.

[Debbie C]

Nikki,have you checked with your dr. about how you are feeling,if not you need to do so a.s.a.p. I just hope your dog hitting your nose is the problem.When I went and had that balance test done on me,they put this eye mask over me which was so thight it still hurts to wear my glasses and that's been two weeks...but I'm not having any bloody nose isssues..so definately get checked out. Maybe you just can't take the mtx. Keep us posted...
I'm also like you, (except I hate the rain unless I want to sleep)I want to move to Europe. I went to Rome and just loved it. But I'm part English and Welsh and would love to live there,and be able to travel thru Europe.But I also want to go to Australia and New Zealand.What I need is a rich man!! I also am part Indian but don't know which tribe,my great,great grand mother was pure Indian.

And Barbara what is up with you? I hope the pills are working and you are starting to feel better. Good luck in Madrid monday. Let us know what the doc. says.

[NikkiNicole]

I've been speaking regularly with my doctor. Had my next round o' blood tests today and of course, everything is right where it needs to be. (We didn't do ANCA and the CRP isn't back in yet) I get frustrated because I wish my blood would show what's going on. Instead, they have to rely on me.
Debra, I also do not know anything about my tribal heritage and my mom was at minimum a quarter Native American. Unfortunately, she has passed away, as has pretty much everyone on my mother's side of the family. I've tried searching her family on Ancestry.com and I'm getting nowhere. I do think my grandfather's family came over from Ireland, I found that but ... nothing on my maternal grandmother's side which is where the Native is!! It's like they don't exist. I've traced my father's heritage back to England and Prince Edward Isle in Canada.

[Barbara N]

Nikki,have you checked with your dr. about how you are feeling,if not you need to do so a.s.a.p. I just hope your dog hitting your nose is the problem.When I went and had that balance test done on me,they put this eye mask over me which was so thight it still hurts to wear my glasses and that's been two weeks...but I'm not having any bloody nose isssues..so definately get checked out. Maybe you just can't take the mtx. Keep us posted...
I'm also like you, (except I hate the rain unless I want to sleep)I want to move to Europe. I went to Rome and just loved it. But I'm part English and Welsh and would love to live there,and be able to travel thru Europe.But I also want to go to Australia and New Zealand.What I need is a rich man!! I also am part Indian but don't know which tribe,my great,great grand mother was pure Indian.

And Barbara what is up with you? I hope the pills are working and you are starting to feel better. Good luck in Madrid monday. Let us know what the doc. says.

I'm doing fine, I leave for Madrid tomorrow and will see as many doctors as I can. As far as Europe, I grew up in Englad and now have spent 30 years in Spain, in the most beautiful unspoilt area there is left. I am from California.It seems that my children all seem to be picking Cherokees as partners. Four of my grand children have dark skin black straight hair and black eyes, they are gorgeous. but my daughter is as blond as they come with bright blue eyes ans fair skin. Now my son is dating a Cherokee and my other daughter married a Spaniard. Europe is a wonderful place to see and everything is relatively close compared to the states and there are so many old and beautiful things to see. If you ever come to Southern Spain you are always welcome here. It is a big old country house but unfortunately as progress continues we are starting to get neighbors. Yuck!!! I hate having neighbors.My horses are right behind the house and it is fabulous.Well you will just have to come visit.

[Debbie C]

Okay Barbara, you talked me into it. STILLLLL waiting on Phil,I think he is still counting his nana's !!! Good luck in Madrid let us know what happened when you get back

[Debbie C]

Nikki, I tried seaching also and I was told that "back in the day" they didn't keep wedding certificates or licenses on Indians.
And my great,great grandfather who marrried an Indian was from West Virginia,I believe, so that was kinda of a taboo thing to do then was to marry an Indian.