I'm 35!!-- and a mini update

So, I had a birthday. Shout hooray! :) Just kidding. But, I did turn 35. and I suppose that is something to celebrate. Shout hooray!

I went and saw my local rheumatologist last week. He wanted to make sure we were all on the same page after I had seen the rheumalotogist in {P}. He said he has communicated with half a dozen other rheumatologists around the country and they all give varying suggestions on what my treatment should be. He gave me my choices and I told him I was perfectly happy to follow the changes the {P} Dr recommended. He was cool with that so long as I come in often for blood work to make sure my liver levels stay normal. and so, for now, we stay with that. I have noticed a considerable decrease in the size of my mass over the past couple of weeks! Seriously, I am amazed at how much smaller it is now. It has been like a flat pancake with a scoop of ice cream on top. Well, the pancake has all but gone away, which means I can feel farther around the mass on top. It is also getting smaller and not as firm feeling. I still have the other small fluid pockets, and they seem to be fluctuating in size day by day. But, I have hope now that this whole ordeal might actually be less than a year!! :)   and that, my friends is actually worth celebrating about! Shout hooray! ;)

another medical uptate...

Here is an update on my Dr appointment in {P} that we went to the end of last month. (This is what I emailed out to my family after the appointment)

We met Dr. {D}(a rheumatologist) in {P} on Monday morning. He was very thorough and nice. He went over the entire ordeal and asked lots of questions to understand the order of things and what I went through.

He asked me a few times if I had been tested for TB and if I knew what sarcoidosis is. (my local rheumatologist Dr {M} had asked me if I knew what sarcoidosis was, but that's as far as he pursued that) He was very good about explaining all my previous diagnoses. He asked if the cultures taken from my breast had been tested for TB. (I didn't know, but after asking the breast surgeon to fax over lab results, we find the cultures had been tested, but the results hadn't come back yet) Apparently there is a family of different types of TB. The one that most of us know about has symptoms like coughing blood. He was looking for a TB that is found as infection(i.e. my breast) I have emailed the breast surgeon to see if the test results have come back, but haven't heard back yet.

Sarcoidosis is probably what I have. It is defined on the hospital website as:

Sarcoidosis

What is sarcoidosis? Sarcoidosis (say "sar-koy-DOH-sus") is a rare disease that creates tiny lumps of cells throughout the body. These lumps, called granulomas, are too small to see or feel. They can form anywhere on the inside or outside of the body and can cause permanent scar tissue. They often form in the lungs...

Sarcoidosis

Sarcoidosis is a multisystem disorder that most often affects individuals between 20 and 40 years of age. Females appear to be affected more frequently than males. Sarcoidosis is characterized by the abnormal formation of inflammatory masses or nodules (granulomas) consisting of certain granular white blood cells...

Dr {D} explained it as my body is have a civil war within itself. I have an over active immune system and it is fighting with itself. The methotrexate(the med I am on) should clear this up.

He had me get an xray to see if he could see any granulomes in my lungs.
Basically, nothing changes in my treatment whether I have it or not. Methotrexate is still the best medicine for decreasing the inflammation. It sounds like once the inflammation is is gone, so is the sarcoidosis and so then I have cured(or so he says)
If I have TB(which I don't think I do) then the treatments change...

Dr {D} changed my medicine dosages a bit. He is tapering me off the prednisone faster than before and increased the methotrexate by 2 1/2 times. I am ok with this decision. I am happy to be off the prednisone faster and hopefully the metho will get rid of my mass faster. It still sounds like it will be atleast a few months though, since the metho doesn't even start working in my body for 6-8 weeks. As of today, I have taken 5 weeks of metho. (update: I have now taken 8 weeks as of Oct 19)

Hopefully this is a clear explanation of how things went. I am just waiting to hear about the xray and if the TB results have come back yet.

Feel free to ask any questions.

This is the next email I sent out about a week later.

Hi all. Here is another update: I have heard back from Dr. {D} about the test results and the xray. He says the blood work came back normal, as did the xray. Which technically means I don't have sarcoidosis.(because there are no signs of it in my lungs) However, he and I both feel that the circumstantial evidence still leads us to believe that I do actually have sarcoidosis and the course of treatment will stay the same.

That being said, I do need to clarify something I said in my previous email. Sarcoidosis is not "curable". It is however, very treatable and once the symptoms are gone(probably within the next 1-2 years) then I will be in remission and may or may not ever see/feel symptoms of sarcoidosis again. 

Thanks to everyone for your sweet notes of encouragement, I appreciate each one. I currently feel great and am grateful for amazing Dr's who are gathering around me to work through this weird medical trial.

medical update

Another medical update is necessary.
We went and saw a Rheumatologist here in town the middle of Aug. He readily admitted that he has never seem GM, let alone GM and EN together. However, after having visited with him a few times, we are confident that even though he has never seen it, he is doing all he can to understand it. He really wants to get me off Prednisone. So, in order to do that, I need to take a different anti-inflamatory medicine. The medicine of choice is Methotrexate. It's a medicine that cancer patients use, and Dr's even use it as an abortive drug. It's a pretty scary choice for me, but after a week of studying, worrying, and talking to 2 different Dr's about it, I have decided that the side effects of the Metho are less than the side effects of the prednisone. The prednisone has not done my body well. My face is starting to swell, and I have a never ending appetite.
Over the next few months, I am slowly starting to taper down the prednisone. In addition, I am taking the Metho once a week, along with a Folic acid tablet.
The Rheumatologist decided that I should see a Dr. at a teaching hospital. I now have an appt to see a Dr. in a neighboring state(about 8 hour drive away) at the end of Sept. Hopefully he will have experience with GM and EN(together? even better) and he will help us to understand how, and why it happened, whether it will go away, and what do we do from here?

The best part? I get an entire weekend away with my DH, just him and me. We don't get away without kids very often, so I can't hardly wait.

In the meantime, I am vigilant about taking my pill regimen each morning. The local Rheumatologist believes I will be taking them for 1-2 years. My breast surgeon is thinking closer to 6 months. I am curious to see what the other Rheumatologist will say about a timeline. The sooner the inflammatory mass goes away the sooner I can get off all these drugs. It is getting smaller, only at a snails pace.

Random Updates...

So this post is a random, catch all for the past I don't know how many months. Clearly, I have missed posting about each of the kids most recent birthdays, and they all had one, but this is going to focus on noteworthy events that have happened since the first of the year.

 First, {k} had his tonsils out in Jan. Here is a before...

 and here is the after. :) Clearly, he wasn't all that worse for wear after the procedure. The following month was tougher for him than for his siblings when they got their tonsils out, but he recovered just fine in the end.

 The end of the school year brought {A} earning Honor Roll for his class. He was one of only a handful of kids in his class to earn honor roll. We are very proud of how hard he worked in school this year.

  

 {A} participated in the school choir this year also. He would meet about 40 minutes early two days a week, and practice. They had 3-4 concerts throughout the year, and were even able to sing at the Capitol Rotunda during Christmas time. He loves to sing!

 

{a} graduated from Preschool in May. She had a wonderful teacher, and a super fun experience! She will now join her brothers in school this year, as a kindergartener!!

 My Grandpa {G} passed away in July. He was 93 and had had a wonderful, long fulfilling life. He went rather quickly, for which we are all grateful. He is now celebrating with Grandma {L} in Heaven. Love you Grandpa!!

July also brought {K} turning 8. This meant he got to have a friend birthday party. He invited 8 friends from school/church and had such a fun time! The most favorite activity were these bubble snakes. They dipped the end of a sock into a light bubble/water mix and then blew in the end of a water bottle. These cool "snakes" would then appear.

{K} made the choice to be baptized. He was baptized and confirmed by his dad and we then had a small gathering of family and close friends for dinner after. We are so proud of you, {K}!!



The following is a synopsis of what I have had to deal with this summer: (I wrote this to a friend in an email)
 While we were gone camping the end of June, I ended up getting mastitis in my left breast. It is very rare for women to get mastitis if they arent nursing, but apparently it can happen. So far it has been two weeks.  They cultured it last week and it is staph. Not good. Last friday a surgeon cut a two inch slit just to the left of my nipple in hopes that the infection would have somewhere to drain. I head back to the surgeons office today for a checkup. It really isnt getting better. In the meantime i have had a rash from the antibiotic. I am so ready for all this to be behind me.
 Next, I wrote:
 Really long story short, we finally made the decision to see another breast care surgeon(who is 1000 time better than the first) and she was willing to try and diagnose the problem, instead of just trying to get rid of the problem. She did cancer biopsies and thankfully they are all negative. She did however, diagnose my breast infection/inflammation as glanulomatous mastitis(GM). It's basically mastitis in my glands. Then, on top of that, I ended up getting erythema nodosum(EN). This is basically an umbrella term for a hypersensitivity/inflammation reaction to (blank). The blank can be infection, inflammation, reaction to antibiotics or any combination of the above. It was extremely painful bruise-like sores all over my legs. I could hardly walk, kneel and whenever I put my legs down I could feel the blood rush to my legs. She put me on prednisone, and I am pleased to share that the meds began working almost immediately. The leg pain is completely gone, and the bruises are looking wonderful(compared to what they did look like).
The surgeon found an article that links the GM to the EN, so that proved to her that they are connected somehow. The GM is a pretty rare kind of mastitis, so she is sending me to a rheumatologist for further consultation to determine if I have an underlying auto-immune something going on.


So, there you go. Major update from our family. Now, on to back to school!! :)

{K} is a star!

I know, I haven't posted in so long, and I need to post on a birthday and such, but today I get to celebrate {K}. He was on the news last night! His class all made weather presentations and then our local news station came and video taped them all. Then the weatherman has played one each night for the past week. Well, last night, {K}'s presentation was played! He was so cute. It was really fun to watch his presentation and to hear him talk about his question. He worked really hard on his question/answer and then made a really nice powerpoint to tell all about his question. His question was: Why doesn't a tornado tip over? His answer: because the force of the wind keeps it up.

Way to go, {K}!!

:)

This picture is of {K} and some of his class when all the first and second graders presented a music program called "Going on a Bear Hunt". It was an adorable program. {K} got to have two speaking parts. It was so neat to watch him. He is so much more confident and brave this year and I have really enjoyed watching him blossom over the past year.

Pine Wood Derby

{A} participated in his third Pine Wood Derby last night. He and DH had a fun time designing and cutting the car out. {A} then painted it all by himself. We took the car to the race last night. We had a wonderful time watching him race his buddies!

Believe it or not, {A} won Grand Prize for the Bear Den!! We are so proud of him! It was fun to cheer for him and his car!!

{A} and his friend {C} with their cars. {C}'s car is a coffin complete with hinged lid and skeleton inside. So clever!!

After the races were over, we texted all the family, and they were so supportive to send back fun and encouraging notes to him.

Way to go, {A}!!

OLW: Choice

I have finally chosen my One Little Word for 2013. This has been a hard one for me. I struggled finding just the right word to fit what I am hoping to accomplish this year. Yesterday Choice came to me at two different times during the day. So last night I looked up its definition and it hit me. Choice is the right word for me for this year.

Choice
noun
An act of selecting or making a decision when faced with two or more possibilities

I also looked up quotes that have Choice in them and here are two that I would like to memorize and apply to my life.

I believe the choice to be excellent begins with aligning your thoughts and words with the intention to require more from yourself.

Oprah Winfrey

The self is not something ready-made, but something in continuous formation through choice of action.

John Dewey

I hope to use the good, better, best idea when making choices everyday this year. Is what I am choosing to do with my time today the best option? 
I also found an app for my phone to help remind me to make great choices each day when it comes to scripture study, prayer and computer time.