December 21, 2013

Decided to use my blog to keep family and friends updated regarding my Wegener's

It all started about 3 years ago when I developed a small sore (scab) on the inside of my left nostril.  I tried all kinds of ointments and creams to clear it up, but, nothing helped and it kept getting bigger.
Of course Monica, being the thoughtful daughter that she is, kept telling me to stop picking my nose....LOL.. and I kept telling her that I was not picking my nose, the sore was getting bigger and bigger, so I eventually talked to my family doctor about this on one of my regular visits and he thought I should have a biopsy of the area.  That was my first encounter with my dermatologist, Dr Baxter, (I was seeing her for my exzema at the time also). 
Dr. Baxter agreed that I needed to have a biopsy, so she tried to do a minor biopsy in her office.  She was having a difficult time getting a sample, so she called in another dr. in her office, and asked him to do the biopsy. 
He also had a difficult time getting a good sample because he said the skin was just shredding each time he tried to get a skin sample.   He did what he could and off to the lab went the sample of skin.
I got a call a few days later that I needed to see Dr. Dempsey (a throat, nose and ear specialist). 
Dr. Dempsey made a day appointment at the hospital for me, so that he could do a much more indepth biopsy of my nose.  They also sent me for a wide range of bloodwork.
I must say, that was the worst most painful procedure I had ever had.  It took them almost two hours to get a fair biopsy sample because one again, the skin inside my nose kept shredding, and it smelled horrible, like rotted meat.
A few days later I get a call from Dr. Dempsey, he advised me that it looked like I had a condition called Wegener's Granulomatosis and that I would have to see a rheumatologist, Dr. Hanly.
I had an appointment the next day and Dr. Hanly did more bloodwork, CT scans, etc, and confirmed that I did indeed have Wegerner's.
What is Wegener's you say???  It is an inflammation of the blood vessels.  Your nose is the second place in your body that has the most blood vessels.  Your kidney is the first.
So Wegener's is an inflammation of the blood vessels in my nose, throat, lungs, and often will also effect your kidneys.  I was lucky because as of July it looked like my kidneys had not been affected.  Only my upper airways, nose, throat, sinuses, and my lower airways being my lungs.
Dr. Hanly also mentioned that the colds and pneumonia that I was getting every year was probably not pneumonia at all and that it was probably the Wegener's and that I probably had this condition for more that 5 years.
Wegener's is a very rare disease affecting 1 in every 50,000 people.  It is not hereditary, or contagious, and there is nothing that I did or didn't do to get this. 
There is no cure for Wegener's, all they can do is try to control the disease and get it into remission.  The only medication known to do this is the same medication that they give to cancer patients.  They are Prednisone and Psyclophosphamide.  These medications can only be used for a very short period of time as they can damage your kidneys.  Ironic that something to help with your kidneys can also damage your kidneys.
So, in August I began taking both medications.  They were prescribed for three months.  The Prednisone I started taking 50 mg per day and after 1 month they began to decrease the amount by 5 mg each week.  When I first began taking the medication I nose was getting much better.  As soon as they began to reduce the amount (by the third week) the inflammation in my nose was coming back and getting worst, so they increased the amount again for two weeks and the inflammation started to get better.  After three months on medication they began to decrease the prednisone again and told me to continue taking the psyclophosphamide for another three months, but that I would have to go off the medication after that and they were hoping that the Wegener's would be in remission by then.
Then, I began getting really bad lower back pains, and what I thought was the start of a bladder infection.  So I tried the good old home remedies of cranberry juice, warm water with soda, drinking lots of water, etc.  After a couple of days of getting worst, I went to see my family Dr. 
He put me on very strong antibiotics, and said I should feel some relief almost immediately, as they had to get rid of this bladder infection because it could affect my kidneys, and with my suppressed immune system (because of the medication I was taking) they had to make sure this infection was cleared ASAP.  He also told me to stop taking the psyclophosphamide, because that could be the problem also.
I began the antibiotics on a Friday and by Monday morning, the pain was much worst and I could hardly walk.  I called my family Dr. and he told me to come into his office.  He took one look at me and sent me to the hospital immediately and called the hospital to let them know that I was on my way.
When I got to the hospital, it was IV, bloodwork, urinalisis, CT scan, poke and pry, and Dr.'s running around like crazy because my blood pressure was much too high and my heart rate was so high that they were very worried. 
They gave me oxycodone, and morphine for the pain but, nothing was giving me any relief.  The only way I could describe the pain was by telling them that it was just like when I went into labour with my children, having natural childbirth with no pain medication, there was the pressure that you have to push and push and lots of burning pain, that would last about two minutes, then it would ease  up and within 10 minutes that pain would start again. 
When I was admitted, they began giving me antibiotics through the IV and every 24 hours if I had no relief, they would try a different antibiotic.  After 4 days, I finally began to get some relief.  I had been off the psyclophosphamide for 7 days by then.
So, in the end, after doing blood and urine cultures and hundreds of blood test and urine test, the conclusion was that I was in Chronic Renal Failure.  Meaning, my Kidneys had shut down and were not working as they should have.
Now, today, most of the pain is gone, but, I am still having some problems.  I have an appointment with Dr. Hanly on Monday, and I will know at that time if there is another medication they can give me for the Wegener's as my upper airways are very inflamed and my lower airways are not great either.  The back pain is not as bad, the burning is not as bad either, but, it is still happening.
The reason I didn't want to tell the family or friends that I was in the hospital is that I myself didn't really know what was wrong, and I didn't want anyone to worry about me.  I knew there was nothing that anyone could do, and that I was in good hands with the Doctors that I have here in Halifax.
On Monday, after my appointment with Dr. Hanly, I will update my blog so that you can all be up to date on what is happening.
I will take a few pictures this weekend and post them on this blog for all of you to see that I am fine.  I have gained a lot of weight (fluids) because of the medication, some of it is slowly going away, but, there is still a lot more to lose.  My hair is very thin and brittle (because of the prednisone, the doctor said I may only lose some hair or I may eventually lose all of it),  So far, my hair and eyebrows have gotten very brittle, and thin, but on a positive note, I haven't had to shave my legs since August.  The hair just stopped growing.
The prednisone has also cleared up my exzema and my skin is softer now than it has ever been. 
The left side of my nose looks very funny.  It is deformed looking (looks like someone took a bite our of the side of my nose).  This is the flesh that is shredding away on the side and inside of my nose.  There is a lot of scar tissue on the inside of my nose that will be there forever.  They are hoping that plastic surgery can be done on my nose to try and make it look half normal again, but, they can't do this until they can heal the scabs and stop the tissue from shredding on the inside, and in my sinuses.
I think this is about the end of my blog for today. 
If you have any questions, please don't hesitate to ask me.  I will answer to the best of my ability.  This is a very rare disease and I am the only patient that my family Dr. has with this condition.  He said, this is something they learn about in medical school but never get a chance to actually see. 
There are not very many cases here in Nova Scotia and my Case File is being used to teach the medical students at the University here in Halifax all about Wegener's.  Each time I go for my appointment with Dr. Hanly, they take pictures, and I have to sign waivers allowing them to use my information for teaching purposes.
The bottom line is, I am going to be fine, we just need to find something that is going to help get this disease into remission without causing any more damage to my kidneys.
I hope this blog will help you to better understand Wegener's and my health issues.
Positive thoughts all the way.

August 22, 2011

Summer is almost over.

Well, summer is almost over and it has been a very busy summer. 

Derek and I went to Vancouver Island the first week of June for his parents birthdays.  Yes, both parents have their birthday on June 6th.  It was a great vacation with lots of sunshine.

Our garden was very successful this year.  Lots of fresh veggies, and still lots of potatoes, and tomatoes left in the garden.

Kelsey continues to work at McDonalds, however, her part time hours have kind of been upgraded to mostly full time for the summer.  No complaints from her as she likes the money and it helps pay the gas for her car.  She and her friends have also been enjoying their summer.  I think they made a "Summer Must Do" list.  Last week; horseback riding, this week; ziplines.  

Cait has been hanging out with friends, and has started babysitting.  That will give her a few entry $$$ also.

Josh and Joeye have been enrolled in Summer Daycamp.  They usually attend 2 days per week, and they seem to really enjoy their time there with their friends.

Emilee has been here visiting with Mike and us for the past two weeks.  She leaves for home on Wednesday.

We, the family, had our annual camping trip to Dunromin campground.  A great time was had by all.
There was, Monica, JJ, Kelsey, Caitlynn, Joeye, Josh, Mike, Emilee, Derek and I, Andrea and Tyler, Amy and Mitch, Henry, April, Meaghan, Michaela, Maddison and Willie. This is our 8th year of camping at Dunromin, and I think it was the best year yet.

Derek and I have book an anniversary holiday in Punta Cana for October.  We will be spending a week at an all inclusive that was recommended by Brenda.  Looking forward to it.

On a more sad note, Monica and Mikes' grandfather, Ralph Marsh, passed away last week.  Their Grandmother, Shirley Marsh had passed away less than a year now, and their Greatgrandmother, Jean Sobey, had passed only three months before the grandmother.  The past year has been a sad one for the Marsh family.  The memorial service for both grandparents were held in Ontario this past weekend, and since Monica and Mike were not able to attend at that time, they will be going to Ontario this week to spend time with their father and the rest of the Marsh family.  This means that I get to stay with the grandkids. So, I am really looking forward to that.

Andrea graduated from NSCC, Community College, and has been able to find a job immediately.  She works for CAT Equipment, in the sales and marketing department.  We were very happy that Dereks mom was able to come and visit with us for the week and was able to be at the graduation.

Grandkids are just about ready for school and they are looking forward to going back.  Hard to believe that this is Kelsey's last year of highschool.  She only needs two credits to graduate, however, Monica, being the smart mommy that she is, has made Kels take all eight credits this year.  Monica says that school is free and that she is going to make sure that the children take advantage of that.  You can never get too much education.  Caitlynn is starting High School this year.  Where or where have the years gone.  You know you are getting old when the grandkids start to graduate. 

Sorry it took so long to update, but I just seem to be so busy lately.  I guess the saying "Time Flies when your having Fun" is true.

Derek and I have been keeping busy with our weekenly drives to the country for picnics and hikes, our trips to the beach, and just getting along with family.  The next big family event will be the corn boil at Paul's, Labour Day weekend.  We are all looking forward to getting together with everyone once again.  Too bad some family members live so far away.

April 23, 2011

Lots and lots of new pics

Hello everyone
We hope that you all have a wonderful Easter holiday.
Here are a few pics to show you how we get ready for the Easter Bunny.
Decorating cookies with Kelsey, Caitlynn, Joeye and Andrea.
 Monica getting the color mix ready so that the kiddies can decorate eggs.
Monica making sure the colors are all ready.
 Candice enjoying one of the cookes that she decorated.
 Caitlynn showing off her decorating techniques.
 Now its Joeye's turn to show off her decorating skills.
 Josh painting one of his eggs.  Green is his favorite color
 Caitlynn decorating her egg.

 Candice is also decorating eggs.
Josh putting the finishing touches on his first egg.
He is so proud of himself for doing this all by himself.
Kelsey is also getting in on the fun.
Another group picture.
This is one of Joeyes creations.  Good good Jojo...
Josh is now adding camouflage to his egg.  Did I mention Green is his favorite color....LOL...
And here is Josh's finished egg. 
An assortment of colorful eggs.
Some of the decorated cookies.
More YUMMY Cookies.
And nothing tops off a beautiful sunny Saturday like a ride in the Wheelbarrow.
Josh enjoying the day working around the yard with Papa/
This was taken on Thursday morning.  Mommy went to school with Jojo for the morning.
On Thursday morning, Nanny took Josh to school.
A picture of Josh enjoying one of the cookies he decorated.
Those cookies sure were yummy.  White and Green icing.  Can you tell that Green is his favorite color...LOL...He sure loves green.

Hope you enjoy all the pics.   I will post more tomorrow evening, after we have our family dinner.  Wish you were all here with us to celebrate.  
We miss you DADDY  (JJ) , wish you were here....Hurry Home!...  We will save you a cookie!!!

April 20, 2011

How is this for keeping up with the blog.!!!!! I'm trying, really, I am!!!

Here are a few more pics for everyone to enjoy.
Monica went to parent-teacher interviews for the three girls and their teachers are very impressed with all of them and they are all doing excellent in school.  Their report cards were the best ever.   We are so proud of them.
Here is a picture of Cait before leaving for her orthodontist appointment.
 Kelsey and Caitlynn having quiet time before supper.
 Another picture of Cait after school.
 Joeye telling nanny all about her day at school.
 Josh checking the calendar and counting the days until Daddy returns... Josh is also wearing the bunny ears that he made at Preschool today.
 Josh showing nanny some of his new breakdance moves.
 Here is a picture of Mike's new toy.  A 2011 Ford something or other ...truck.
 Josh cleaning his truck and waiting for JJ to return so they can go cruising through the trails...
Hope you all enjoy the new pics.  I wanted to post a pic of Monica but she wouldn't let me take one of her.   Maybe I can convince her tomorrow to let me take one.

April 18, 2011

More pics for Daddy (JJ) and anyone else who is keeping up with the news.

Hello again
All is going well so far.  Had Candice drop in for a visit during her quick turn around time in Halifax.  She will be returning this weekend and this time will be staying a few days to visit.   We are very excited to have her visit and are making plans to keep her very busy.  I will let her have one evening to herself to visit with friends that live in the area.
We are also hoping to make a quick overnight trip at the end of the month, to see Uncle Paul and Auntie Cheryl.
Joeye and Josh got to go to Build A Bear, but, Joeye is still looking forward to her shopping trip with Daddy and says she already knows what she is going to buy.  We all miss daddy and are waiting anxiously for his return.
Here are a few more pics that Josh and Jojo wanted me to post for daddy.
Hope everyone enjoys them cause we had fun taking them.

Here is a picture of Joeye with her new Build a Bear - Bunny,  She named her Flower.
 Joeye making a funny face for daddy.
 Joeye waiting only one more minute before it is her time for the computer.  She and Josh each take turns.
 Josh enjoying a snack before having his second turn on the computer.
 Josh is now playing games on
 Josh's turn to make funny faces for daddy. 
I absolutely love spending time with them.  Now if I could only convince Caitlynn and Kelsey to let me take pics of them.   I will try and get some of them tomorrow.

April 15, 2011

I Promise to update more often, now that I know you look at them.

Apparently, I SUCK at posting regularly on my blog, as I had promised I would.
I wasn't sure if the blog was being seen, well, I found out this morning that it is. So I promise that I will blog more often until JJ returns home.
Mom is still here visiting and plans on staying until the end of May.
Derek and I will be going to BC early in June to help his parents celebrate their birthdays. Both his mom and dad's birthday is June 6th. His father will be 80 this year, I won't mention his mom's age, and they are hoping that the family will be together to celebrate. Derek's brother Mark ( lives in Toronto) will also be in BC for the celebration.
Candice is here this weekend working on promoting WagJag. I picked her up at the airport this afternoon and we spent a few hours with her before taking her to her motel room.
I will be spending the day tomorrow driving her and her team around and then Derek, Mom and I will meet up at "The Old Triangle Pub" in Halifax tomorrow afternoon before I drive Candice back to the airport for her return to Toronto.
And now, I have a few pictures to post. There is a couple of Joeye and Josh and one of Candice. I will try and get pics of Kels and Cait and Monica tomorrow.
Joeye had PJ day at school today so this is a picture of her in her pj's after school.
This is Josh giving nanny MacAulay a wink.
Here are two picture of Josh and Joeye making funny faces for daddy.
This pic is Josh wanting daddy to know that he is still playing computer games.
And Joeye wanting daddy to see that she still has a beautiful smile just for him.
And finally, a picture of Candice having late afternoon lunch.
Hoping you enjoy this short blog...Until Tomorrow...

March 30, 2011

More pictures and updates...Especially for JJ (aka Daddy)

Hello everyone, I will start by showing you a picture that Josh made. He said this was a picture of his Nanny (me). Not bad for a three year old artist. And this is a picture of his Papa (Derek).

You know spring has arrived when it is warm enough for Kelsey to take the top off her Tracker.

Here is a picture of Josh showing off his new Mario T-Shirt. He wanted to show Daddy his new shirt.

Josh enjoying his watermellon.

This picture of Josh really shows how tall he is getting. He may look like his Mama but he is tall and slim like his Daddy.

Joeye wanted to show Daddy that she is learning how to frost cupcakes and will have some ready for him when he gets home....Chocolate or Vanilla, what do you want Daddy????

Joeye also loves watermellon. One of her favourite after school snacks. We wish Daddy was here to share with her and Josh.

Joeye and Josh in the back seat of the Tracker. Kels is going to take Josh, Joeye and Cait out for ice cream. Yummy!!!

Another pic of Josh and Jojo in the Tracker with the top off.

Here is a picture of Cait showing off her new "Hello Kitty" backpack.

Caitlynn is all smiles after talking to JJ on the phone.

JJ called and spoke to the kids today. They were so excited, and happy to talk to their daddy. Joeye is looking forward to her shopping trip with Daddy when he returns.

I don't think Josh quite gets the part about daddy being so far away because after talking to him today he kept going to the door and looking outside and looking out the window. When I asked what he was doing he said he was "Waiting for Daddy". He said, "I talk to my Daddy and he is coming home now". We explained that Daddy was coming home soon but that it wasn't today. He was sad, but I told him that we could make a calendar tomorrow so that he can cross off the days until daddy does come home. I can get stickers for him to add to the calendar each day or something. That may make it a little easier for him to understand.

I will let him take a picture of his calendar so we can post it on here for Daddy to see.

Mom (Nanny MacAulay) arrives here tomorrow. I will pick her up from Melanies when she arrives. It will be nice to have her visit with us for a while.

Candice will be coming to Halifax for work and a visit next week. We pick her up at the airport on Sunday. We are all very excited to have her and we will have lots of fun things planned for her to keep her busy.

The weather here has been beautiful this week. Josh and I had a picnic lunch outside today.

Hope everyone has a great week.

We miss you JJ (Daddy). Hurry home....

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