Thursday, March 20, 2014

New Job, New Plan

So with the onset of my Sarcoidosis alot of things had to change. Thankfully Jonny found a great job! The day after I stopped school he applied at CenturyLink. I call it his first grown up job. It is his first job that is Monday through Friday. The hours right now are 10-7 but after he moves up in seniority he can get either 9-6 or 8-5. He gets benefits and paid vacation.
I absolutely love this job!
Having him home on the weekends has been great! We were planning on him going back to school in Pocatello but with a job like this how could we move. Did I mention they pay for his schooling? So he is going to school part time online. After this semester he will have his associates. Then he is going to continue on to get his bachelors in business.
We plan on him working his way up in the company. They have branches all over. Eventually I still hope to move to Florida. I would love to live on the beach.
I hate winter! I hate being stuck inside. Florida will definitely happen one day. I can dream anyway.
For now we are enjoying having weekends together.

Sarcodosis

Its been over a year since I have posted on this blog. So many changes and so many things have happened.
I started Cosmetology school. I got diagnosed with Sarcoidosis. I had to stop Cosmetology school.
That was honestly one of the hardest things. I loved Cosmetology school and was actually pretty good at it. I was there for 600 hours. I can still cut hair but the chemicals don't react well with my lungs so I can't be around them much. I am still cutting families hair which I really enjoy.
The process of getting diagnosed was definitely not pleasant. It all started out with me going to urgent care a couple times but they just gave me an antibiotic without much thought.
Then one day I was at school doing highlights on my mannequin and it became hard to breathe. So I went to the ER. They tried to blow me off too but I made them run some tests.
After the xrays came back they told me I needed to go to a specialist. Thats is when all the tests started. First it was xrays, then it was a CAT scan, then it was a breathing test. After that they said it was either sarcoidosis or possibly Cancer.
I have to admit when I heard that I freaked on the inside. I stayed calm on the outside mostly because everyone else was so worried.
The thought of not being around to see your child grow up is the scariest thing possible. I am a planner. So my only way of staying calm was to plan out best and worse case scenario.
So the next step was a lung biopsy.  I was awake for the procedure but drugged enough that I don't remember it. Overall it went well but they nicked my throat on the way down and it got infected. So after missing 3 days of school I went to the doctor for medicine.
A couple of days later we had the results. Thank heavens it was not cancer.
Sarcoidosis it was. The treatment hasn't been too bad. I was put on steroids and told that school was a no go at least temporarily. It didn't take long for them to say I should quit permanently.
The steriods have been a long process. I started them in November. In January they lowered the dose to start the weaning process. Now in March they lowered it again. I am down to half the original dose.
The side affects haven't been too bad. I am hungry all the time. Sadly my metabolism isn't as fast. I have gained like 15 lbs. Not too happy about that but hopefully after I am off the medicine I will be able to loose it.
I have to say the most frustrating part is the unknown. Sarcoidosis is pretty rare and not very studied. It fluctuates its severity pretty drastically from case to case. Some people have it and it goes away without them ever knowing that they have it. Other people have it so severely they need a lung transplant and it can spread to your eyes and heart.
I am grateful that it hadn't spread to any where else and that my body is taking the treatment so well.
Hopefully only a couple more months and I will be off it completely.
The next thing is keeping an eye out for relapse. Most times relapse happens fairly fast after the initial time so fingers crossed that doesn't happen.
I think the reason it took so long to write this post it I was scared of it. I hate not having control over something in my life especially when it is my own body.
I am so glad things are going the way they are now.