Random Thoughts Today

One of my favorite TV shows was "Monk." I even bought a Monk bobblehead!
One thing he always said about his "condition" was that "It is a Blessing and a Curse." That's the way I see my condition. It has been a blessing the last 3 years that no one could really tell I was not well. Everything was happening on my inside. The Curse was, NO one could tell I wasn't feeling well. I worked and slept. That has been my life for the last 2 years. This last year was the worst. But having Great children and 3 Beautiful Grand Children, everyday is a Blessing and what keeps me going.

Now let me talk to you about "HOT FLASHES." Menopause has come and gone. Had some hot flashes. Took medication for a short while and stopped. Hot flashes decreased. NOW, every evening I have a power surge that explodes in me. Starts with funny feeling in head and then whoooosh! I'm happy it is happening in the winter. It would be a lot worse in the summer! :p
Don't know if this increase is because of infusion, I will ask doctor.

Next on my list to talk about, my abdomen. Area above navel. Oh my! I will have to keep track of how and when this happens. It gets sooo large and firm. I measured it today but will not share that. lol  It will go down in a few days. No I am not constipated. haha

Enough for now.
Peace out. 

This is me getting my first infusion of Cytoxan on Oct. 15 in Akron. It was a long day. Couldn't sleep the night before. My sister Janet took me and entertained me. She even brought me toast! They have a FULL kitchen with all kinds of goodies. I didn't get nauseated. They gave me anti nausea med before starting. I was prepared with "puke bag" just in case.

My last night to work was Oct.5 2013. Almost one month off work. Still going strong. This is the last of my 10-14 days of being more susceptible from the med. So far so good. Went to church on Sunday and wore my mask. Maribeth is selling crochet stuff at a craft show this weekend, so I am busy crocheting some things for her to sell. $$$$$ I haven't started getting any disability yet. It could be 3-4 months!!!$$$  Finding out about how people survive on disability!!!! It's interesting. Never thought I would be going through this. But I will make it!

I miss seeing my girls that I took care of at work. I hope they stay healthy this winter.

 

FEELING:

Ever since I started my infusion I have a very slight headache right above my eyes. Continue to have lower back heaviness and upper back tightening. Also, since I am on a high dose of Prednisone my appetite has changed. Plus my stomach has increased in size. I think I am having another "Alien Baby". (Had one once before when I had my gall bladder out about 6 years ago!) These are things I can deal with. I haven't lost any hair yet. Can't remember if I said that I can get a FREE wig. I'm thinking RED.

Enough for today...

Peace out  

I have been dealing with some type of autoimmune disease for the last 3 years. First dx set me on the way that my kidneys were failing. So every 3 months for the last 3 years I have seen a Mansfield kidney doctor and getting blood work to see if I was ready for dialysis. Always staying in Level 4 where Level 5 is dialysis. Not a way to live a life......Plus during this time I was ALWAYS having sinus problems that included my eyes, ears and dry mouth! Always on antibiotics!!!!! FINALLY my "lovely" niece Tara, who is a dialysis nurse in Akron, said.......SOMETHING has to be done. She spoke with a kidney doctor that she loves in Akron. I saw him this summer. Fell in love too. This lead to my second kidney biopsy and a dx from previous post. FINALLY a dx with a treatment. YEAH!!!!
I will be getting an IV infusion once a month for the next 6 months in Akron of Cytoxan. (It is a cancer drug that works for this dx) Because this medication can decrease my white blood count, I have to be off work. No nursing for me for at least 6 months. First infusion was Oct.15. All went well. No nausea. I still have my hair. I may lose or just may just thin. I'm hoping I lose it! Crazy, I know.
So I am home 24-7 with Maribeth's help. Along with Penny (the dog) It is going to be a long winter!!! I hope I don't turn into Jack Nickolson in "The Shining!"
PLUS I told the doctor NOTHING is going to keep me away from my grand children. I will mask up and did yesterday for Kendall and Landon's baptism!
I need to THANK ALL MY FAMILY who have been sooooo supportive during this period of my life. I LOVE you ALL!!!!

MY LIFE SO FAR........

I have decided to start a blog during my time off work to pass the time and also keep everyone updated on why I'm off work. You can follow if you want. No biggie. I just needed a place to write how I'm feeling and not post everything on Facebook or remember to include people in e-mails!!!

My diagnosis: (incase you want to know lol)

Granulomatosis with polyangiitis (Wegener's) (GPA)

What is Granulomatosis with polyangiitis (Wegener's) (GPA)?
Granulomatosis with polyangiitis (Wegener's) (GPA) is a rare form of vasculitis mainly involving small and medium-sized blood vessels. The disease can affect most parts of the body. It commonly affects the sinuses, nose, throat, lungs, ears, eyes, kidneys, skin, joints, brain and other parts of the nervous system. Not every one with GPA is affected in the same way. Some patients have mild disease, while others may have severe damage to these organs which can be life-threatening.
Who gets granulomatosis with polyangiitis (Wegener's) (GPA)?
Granulomatosis with polyangiitis (Wegener's) (GPA) occurs in both men and women and can affect children and adults. Although Caucasians are affected more often, people all over the world can get GPA.
What causes granulomatosis with polyangiitis (Wegener's) (GPA)?
Wegener's granulomatosis is thought to be an auto-immune disease for which there is no known cause.
How is granulomatosis with polyangiitis (Wegener's) (GPA) diagnosed?
The diagnosis of GPA is made by combining clinical features with laboratory tests (including tests for ANCA) and biopsy of affected tissues.
What is the treatment for granulomatosis with polyangiitis (Wegener's) (GPA)?
Treatment of GPA usually includes a combination of glucocorticoids and an immunosuppressive drug such as cyclophosphamide, methotrexate, or azathioprine. If diagnosed promptly, treatment can bring about early remission and prevent organ failure. It is a chronic disease, and although remission of symptoms is usually achieved, the relapse rate remains high.
What is "granulomatosis with polyangiitis?"
Granulomatosis with polyangiitis (GPA) is a new term introduced to replace the name Wegener’s granulomatosis. As the term is being adopted, the terminology “granulomatosis with polyangiitis (Wegener’s)” has been proposed.
Polyangiitis (Churg-Strauss). Antinuclear antibody (ANA) is a blood test most often elevated in patients with systemic lupus erythematosus (“lupus”), Sjogren syndrome, scleroderma, and other types of autoimmune diseases.