I awoke this morning feeling pretty good considering I hadn't slept much last night or the last few nights. As I was getting dressed for my Rheumatology appointment this morning, I thought, my face looks so bright today. How can that be with no sleep? I was still moving a little slower due to the muscle biopsy done last Thursday and the cold weather seems to make me even more stiff.

Yesterday had been such a hard day ... in the beginning! I kept reminding myself of 2nd Timothy 1:7; 'For God hath not given us a spirit of fear; but of power, and of love, and of a sound mind'. And God blessed Jimmy and I yesterday in a way that was even a surprise to us. Just something that the both of us will know for now.

Even in that blessing with the struggles and the suffering, I still wasn't feeling good physically and last night's inability to sleep didn't help me any. Or so I thought. I got up even earlier than the alarm had been set. I started preparing tonight's supper and then got dressed and all the while I thought, 'have I been sick'? I know I sound a little cuckoo, you should live here!

Then I started on my way to my appointment. I didn't even have to go back into the house becoz I forgot something, that's unusual. Jimmy is going to meet me at the Rheumatologist's office becoz we're hoping to get some news back on the biopsy of the rash on my chest. I get there first and wait in the lobby area of the hospital, and when he walks in, he's smiling and he's exclaims on my bright face. I was embarrassed and too shy to say, 'hey, I thought the same thing this morning'.

So we've written a list of questions for the NP that I'll be seeing and I made notes about the rash I got over the weekend due to antibiotic after surgery and we're all prepared. I say that, but really, I was prepared to hear about some more 'hurry up and wait'! When the NP comes in, her first words are, 'we have the preliminary results in'.

I was terrified and excited all at the same time. She starts off saying that the rash is not hives and no, I'm not crazy! Yea!!! She is diagnosing me with 'Dermatomyositis'. This is what she first thought it was in the beginning. The vasculitis that the podiatrist is going to check and the inflammation in my eyes are all part of it too. I don't have lupus, which was a relief. She's so smart! Naming off so many things and I'm thinking, how can she retain that kind of information so easily. But she has a bedside manner that few people in the medical field have any more. She's so down to earth and kind.

The bad news is the treatment. Steroid treatment and other things that may come up after we get the results from the muscle biopsy. It's important to rest, but also to build up my muscles. It's a rare autoimmune disease and she thinks I probably got it after the illness in 2006 and my immune system was so low.

I feel so blessed! This NP is not a regular in the Rheumatologist's office, she was just filling in while one was on maternity leave. When I went to make my next appointment they mentioned that she wouldn't be here anymore becoz the doctor will be returning. My first thought was that God put this sweet, intelligent woman here at this time just for me! There's not a doubt in my mind!

I have been so blessed to have Jimmy by me and also to have Meggie. She has been such a help to me these past two years with all the accidents and sicknesses I have had.

As we left the doctor's office, Jimmy was beaming coz he knew these last two years have been hard on me, hard on him too. I was tearful but joyful! We were both so giddy! And still are!

Psalm 91:2; 'I will say of the Lord, my refuge and my fortress; my God; in him will I trust'.
God has seen me, He does see me! I thank you Lord Jesus!


What is Dermatomyositis?
Dermatomyositis is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness.Dermatomyositis’ cardinal symptom is a skin rash that precedes or accompanies progressive muscle weakness. The rash looks patchy, with bluish-purple or red discolorations, and characteristically develops on the eyelids and on muscles used to extend or straighten joints, including knuckles, elbows, heels, and toes. Red rashes may also occur on the face, neck, shoulders, upper chest, back, and other locations, and there may be swelling in the affected areas. The rash sometimes occurs without obvious muscle involvement. Adults with dermatomyositis may experience weight loss or a low-grade fever, have inflamed lungs, and be sensitive to light. Children and adults with dermatomyositis may develop calcium deposits, which appear as hard bumps under the skin or in the muscle (called calcinosis). Calcinosis most often occurs 1-3 years after the disease begins. These deposits are seen more often in children with dermatomyositis than in adults. In some cases of dermatomyositis, distal muscles (muscles located away from the trunk of the body, such as those in the forearms and around the ankles and wrists) may be affected as the disease progresses. Dermatomyositis may be associated with collagen-vascular or autoimmune diseases, such as lupus.
Is there any treatment?
There is no cure for dermatomyositis, but the symptoms can be treated. Options include medication, physical therapy, exercise, heat therapy (including microwave and ultrasound), orthotics and assistive devices, and rest. The standard treatment for dermatomyositis is a corticosteroid drug, given either in pill form or intravenously. Immunosuppressant drugs, such as azathioprine and methotrexate, may reduce inflammation in people who do not respond well to prednisone. Periodic treatment using intravenous immunoglobulin can also improve recovery. Other immunosuppressive agents used to treat the inflammation associated with dermatomyositis include cyclosporine A, cyclophosphamide, and tacrolimus. Physical therapy is usually recommended to prevent muscle atrophy and to regain muscle strength and range of motion. Many individuals with dermatomyositis may need a topical ointment, such as topical corticosteroids, for their skin disorder. They should wear a high-protection sunscreen and protective clothing. Surgery may be required to remove calcium deposits that cause nerve pain and recurrent infections.
What is the prognosis?
Most cases of dermatomyositis respond to therapy. The disease is usually more severe and resistant to therapy in individuals with cardiac or pulmonary problems.