Another Update

I didn't know wether to post again or not.  I don't want to be that "sick" person who complains all the time. A lot of people have been asking about my disease and when I will be done with treatment so I just decided to write a post to explain everything that has happened recently.

In short I have at least 4 more month to go.

The last month has been a rough one.  I have been on high doses on antibiotics since Sept 4.  We upped my dose at the beginning of January and that is when it all really started.  My stomach had been having trouble on and off with the antibiotics.....it is hard on your stomach but when I upped the meds my stomach gave way I couldn't keep anything down.  We were going to try to stop the meds for a week or two and then start a different antibiotic but my stomach is shredded and I won't be able to take any antibiotics for a long while.

So we go to step two anti-malayria medication (literally anti fungal meds).  It is a lot softer on my tummy but more toxic on my body.  I will have to have a liver test once a month and an eye test to make sure my retinas aren't effected.  I will get sicker at first but the hope is that it is faster acting than the antibiotics and in a few months I will feel better.  If this med works there is a chance I could just stay on it a few times a week for the rest of my life and never have to do treatments again, just keep up with it so my disease won't ever resurface as badly as it is now.  So it is all in all good news for the long term future, but frustrating for short term.

Ted and I are doing pretty good.  It hasn't been easy I will tell you that!  We have had some frustrating days and weeks but we are trying to stay positive because there isn't many other options at this point.

Hope this clarifies some of the questions everyone has been having don't hesitate to ask more I just wanted to help everyone understand a little more of what is happening.

Update

I went to the Dr. last Wednesday to get an update on my progress and to figure out something to do for my extreme leg pain and cramping.  It wan't the best Dr. apt.  He said that my disease was a lot worse than we originally thought and that instead of turning a corner in the next few days, I had a least 2 months left before any relief would come.  It wasn't the news I wanted to hear the day before Thanksgiving.

I felt bad after my last blog post because everyone says I am so positive.  I hope you know there are lots of times I question why me, or if this will ever go away.  This weekend I had several nights where I was sad, even devastated that I have to do this for a lot longer than we thought.  It will be a total of 4 months before I start climbing out.

I am trying to see it from a positive side that at least I didn't know at the beginning it would take so long, 2 months doesn't seem like that long....so I can do it another 2 months.  I know I can, some times it is just hard to take it all in.  I really didn't want to be sick for Christmas, but I can't control much of that.  So now instead of feeling good for Christmas Ted and I have a new goal of feeling better by my birthday March 5, I think it is doable.  I just have to get use to the new idea I guess.

In other news I found a few pics from the last month I wanted to share:

Ted's mom came over and helped me set up our Christmas tree!  The 2nd tree in our whole marriage.  My first fake tree ever...I grew up in Utah where real Christmas Trees weren't a fire hazard...something I have to get use to here in dry old AZ.  

I am making these for the tree...so far only 4 done.  They are decoupage ornaments with old book pages on them.  I had the idea since Ted's biggest passion is books, I ended up using my grandma's old cooking books (over 50 years old) to incorporate family and of course my love for cooking :)  They are turning out pretty cute, I just need more energy to do them all!

Yesterday we got to visit our good friends (who is also Ted's cousin) Roger and Lindsey who just had a new baby Thanksgiving eve!  He is adorable!  Ted loved holding baby Owen.

Yes that is a chocolate fountain in our fancy grocery store that is near our house.  They have a wine cellar, a man's den with club chairs and TV's for the men to watch TV, fruit from all over the world...it is pretty crazy!

I made an apple pie for Thanksgiving.....It turned out cute, but it was really runny...I think I better lay off baking till I feel better, but at least I made something for Thanksgiving!  

We got a new member of the family...a TV.  We haven't had one since before we left Philly 3 years ago, once we found out I would be in bed longer Ted made sure I had something to do :)

One of my favorite places near our new apartment is an outdoor mall, The Scottsdale Quarter.  It has the prettiest outdoor lighting at night complete with a light up splash pad dancing to music.

I had to add this one, Ted manages online faculty for Grand Canyon University and the team he manages dressed up like him for Halloween, how perfect was it that he wore the exact thing that day?

(Ted gets a hard time for wearing a shirt and tie to work every day)

Lola and I spend a lot of time at the pool in the sun trying to get more Vitamin D.  Such a hard life....

Hope you have a great day!!!  

We are still here!

I noticed today how long it has been since I posted!  OH gosh!  Not much has gone on in terms of exciting things so not much to post.

Ted sold his car.  He is working like a mad man at Grand Canyon University and is in his last year of course work for his Doctorate at Pepperdine.  Almost done with school!

I got my real estate license toward the end of summer and then got the bad news that I was sick again.  At first it was just Lyme disease again so we went to a doctor to try to treat it.....that was when he found out I actually have never had Lyme disease but instead have a rare blood diseases that is attacking my white blood cells (a type of a Protozoa).

I started treatment in early September right when we had to move.  When you treat a blood disease, you get  a lot worse before you get better.  Usually the blood disease lays dormant in most your body but when you start treating it the disease starts to fight back, making your body a war zone...literally!  I am suppose to get to a point where it is so bad that it kills everything and then I will start feeling better....still waiting for that point.  I was suppose to hit the bottom by Thanksgiving time...but it doesn't look like that is going to happen.

Here is a picture of my blood test.  The blue is the blood, the white film is the disease (it literally makes your blood really thick, it is named for the greek word slime....), the white dots are my white blood cells in cased in the disease.

I have had tons of people asking so I thought I would just try to explain it a little better.  I am on huge doses of antibiotics that are trying to fight the disease.  The pain I feel is a muscle/joint pain mixed with bone pain.  And I have little to no energy.  But the best part is we know what it is and we can treat it!

Blood diseases never truly go away fully, but we can track it and maybe every 5-10 years (hopefully longer) treat it again.  Those treatments won't be as long or painful as this initial one, especially if we catch it fast.  

We are so lucky to be in warm Arizona during this treatment with lots of family and friends helping.  It has made these last few months so much easier!  The worst part of the whole thing...I can't drive!  It really has been worse than the pain some days!  Ha ha...how is that for dramatic?  I don't have energy to go anywhere anyway...but just knowing I can't drive has been so hard.

Ted has always been so supportive, he is such an amazing guy for working 10-12 hours a day coming home to take care of me and fitting studying in somewhere along the lines.  We are just really lucky to be in a great place and we feel so loved!  So thank you to everyone!  

I am not shy about talking about my disease so ask away.  I just don't love to talk about it on Facebook or the blog every day because then I feel like that "sick" person.  I will be better before you know it!  Here's to being healthy!  

Ted's selling his car!

It's time :(  Ted is selling his baby!  Come take a look at his car here:
http://1966karmannghia.blogspot.com/