Not so fast...

Not so fast...

Since my last blog post, I have struggled to sit down and write about what is going on. In August, I made a trip to the Dermatologist. They looked me over and decided that it was time to get some skin biopsies. Since that day was day 1 of the Prednisone treatments, they advised me to stop immediately in order to get an untreated skin sample. So, just like that...I was not going to start treatment after all. On my last blog, I mentioned that on the second Dermatology visit, they took 5 biopsies. At that time, they told me I had some basil cell carcinoma, yes, skin cancer. Easy enough! Dermatomyositis (DM) is associated with cancer and that would be the explanation, right? Not so fast!

When I received the results, they indicated that there was no basal cell cancer, but one of the spots on my chest were just Lichen Planis like Keratosis and the other was an intradermal nevus. What does that mean? Basically, it means that I have severely damaged skin lesions on my body that may lead to skin cancer. At this time, they are not cancer. These lesions are permanent.

The biopsy from my shawl area (upper back) was found to be Piokiloderma (Damaged skin lesions) and consistent with DM. Finally, the biopsy taken from the right 5th knuckle was consistent with DM. So there says it! Not that I have been waiting for it or wanting it, but I officially have my diagnosis of DM. Just like I thought all along, but it took months for the proper diagnosis. Yes, I now know I for sure have Dermatomyositis! Now what do I do to start getting treatment so I can feel better?

Best Therapy: The love of a new kitty

They always say that a cat is therapy. Well, Mike and i got this awesome new kitty.
Her love alone (Well nothing can top the love of my hubby) is great medicine. Meet Nala! She is a Maine Coon. When we took her to the vet, they indicated that she will be quite a large cat. We just love her to pieces.

Unlike most cats, she loves the water. Whenever we go to the bathroom, she has to be right watching as you flush and head in the sink as you wash your hands. Sweet stuff! The is the Queen of the Roost!

What next?

Not the way I wanted to spend
my birthday :(

The next step was a trip back to the Rheumatologist. When I finally went there, I was under the understanding that I was to start a new treatment regiment. Nope! Guess what??? More testing! Dr. Mosley told me I would be starting steroids and a drug called Methotrexate...soon. But first, I would have to do some things. Remember the CT scan after the muscle biopsy? Well they found a lesion on my liver (right lobe) and a nodule on my right lung. I had to get those checked out and had appointments scheduled for that. On my birthday, I ended up in the hospital emergency room with severe back pain and treatment for that same UTI that never went away. I got treatment with a new antibiotic, which eventually worked. Happy to be rid of that!

My new birthday bracelet

They did another CT Scan at that time and saw the same nodule and lesions. At that time, my primary care doctor said that I had more blood work for checking my kidney function, and the Rheumatologist said that I needed to see if I had a natural infection of chicken pox. I also needed to recheck my autoimmune nuclear antibodies (ANA). Then I would go to appointments for a liver ultrasound and MRI.

Findings of new tests:

Liver: The ultrasound and MRI showed that the lesions on my liver were hemangiomas. These can be normal and given my recent stop of oral estrogen, it more that likely is a result of that. I will have to follow up in 6 months.

Lungs: A trip to the pulmonologist proved nothing but the fact that I have a nodule on my lung and it is small enough that I can follow up in 6 months, unless more problems arise.

Chicken Pox? Yep, had natural infection. Based on the amount of antibodies, I had it more that 12 years ago. This information was needed because if a patient gets shingles while taking methotrexate, it can be deadly. I am in the clear.

Kidneys: Kidney function test showed perfectly functioning kidneys. :)

ANA: At the time of all the testing, those results were not back.

Life goes on while doing more tests. Since the middle of September, I have been steadily going down hill on this roller coaster; losing strength, gaining more symptoms, fighting through the extreme fatigue, and being happy that I am getting closer to getting treatment so I can feel better.

Knowing I could have some serious changes in my appearance once I start treatment, I decided to get a mini makeover (My sister colored my hair). What do you think?

Red hair? Yay? Or Nay

What will be on the next blog?

More symptoms, Disease Progression, Scheduled treatment.