A personal Blog post

I have always been an introverted person and also very stoic. I blame this somewhat on my Irish heritage where guys simply don’t discuss their feelings. Blogging takes this to a new level. While I don’t have a problem discussing my ups and downs with dermatomyositis, there are somethings I have kept very reserved. I am acutely aware that anyone can read your Blog post, including your employer. It then becomes a fine line on how much I want to divulge. But here goes!

When I went to see my primary care physician some months ago, he made a comment that still resonates with me. “Do you need to be on so many pills?” It was a weird thing for a physician to say, but I understood where he was coming from. None of us wants to be unnecessary taking medication.

As well as dermatomyositis, I have high cholesterol and high blood pressure. Despite trying to change my diet and watching my weight I could not get around these without taking medication. The ‘discretionary’ medication I am on is anti-depressants and sleeping pills.

I never felt I was depressed with the flare-up and it took a long time for me to be convinced to go on anti-depressants. What is not in dispute is that I could not stop my swearing and outbursts. It was tough on Nicole and I did it in front of my 5-yo. Prednisone is a big part of it. Anti-depressants did suppress my outbursts. I went back to work this month, which is going well. Also as you may have read in my last Blog entry, finally I feel I am coming out of my flare-up. Two weeks ago I convinced myself I am fine and stopped the anti-depressants. Lo and behold I am back to my ornery self this week. Anti-depressants are no longer discretionary.

Prednisone also plays havoc with my sleep. To compound matters I have severe sleep apnea. With all my various ailments and having cancer in the family, nothing frightens me like sleep apnea. I have no doubt my dad had it. He was a very loud snorer and would try and nap on his lunch break most days from the shop. He never had it treated. Years later he suffered a number of mini-strokes to the brain and eventually had to go into full time assisted living. The last time I saw him, he could not talk, walk or feed himself. He just stared at me intensely as I spoke to him. Rightly or wrongly I am convinced that sleep apnea contributed to his strokes.

Two sleep studies have confirmed I have severe (hyper) sleep apnea. I have been using a CPAP for at least 2 years. These machines can be a bit like Big Brother as they record when and for how long I use it. They are also difficult to sleep with. I seem to go into a dream state for hours and not go into a deep sleep. Howevers my sleep doctor tells me I am sleeping a lot better based on the data she downloads from it.

I take Ambien to combat the prednisone and somewhat the CPAP. The drug is habit forming, so now and again I stop taking it and see how I sleep. The nights I don’t take it, such as tonight, I don’t sleep. Ambien is currently not discretionary either. Hopefully this will put my primary care physician’s comment to sleep.

light at the end of the tunnel

At long last I feel confident I am turning the flare-up around and heading in the right direction.

My CPK continues to fall, although not dropping as rapidly as I want. Finally I am having a good week in terms of strength improvement and I am not experiencing a lot of pain. Earlier this month I was having a lot of up and down days. My hips and lower back were aching quite a bit in the afternoon and quadriceps and hands would be throbbing at night-time.

I went back to work at the start of the month and that is going well. The first few weeks I would be sore towards the end of the day, but not so much lately. I am happy to say the mental fog has started to lift and I feel back to my normal self.

My major problem right now is fatigue. I crash hard at about 8 PM every evening. It is very frustrating as I can never get anything done. Now that I am back at work I find I have even less time to achieve anything.

Since it has been 5 months since I last did Rituxan, my Rheumatologist ordered me a new round of 4 infusions which I started this week. Thankfully my Health Insurance approved it without much battle. I had something called QuantiFERON TB Gold In-Tube (QFT-GIT) test in advance. The QFT-GIT is a whole-blood test for use as an aid in diagnosing Mycobacterium tuberculosis infection, including latent tuberculosis infection (LTBI) and tuberculosis (TB) disease. Yes, I am as confused as you are as to what this means! I have had TB tests done before where part of my arm is tested for a TB reaction. Also I have had a Hepatitis blood panel earlier this year which my insurance wanted done before I started any infusion.

I am trying to get a bone density test scheduled now that I am back on prednisone. While on Rituxan my rheumatologist wants me to hold steady on 20 mg prednisone daily. I have started calcium supplements to combat potential bone loss from the drug. Instead of Bone Up which we blogged about previously, I went with VitaFusion Calcium and Vitamin D3 Gummies. I already take Omega-3 supplements on recommendation of my ophthalmologist and did not want to take any further gigantean pills for calcium. I opted for the gummies instead. One problem with calcium supplements is the risk of kidney stones. I have had those before and it is not a very pleasant experience. You can read here how to minimize getting them by clicking here.

Now that I am on the road to recovery I need to get serious about physio. My legs get enough exercise during the day, my arms, hips and core do not. I have lots of notes on exercising these parts and have the equipment from doing physio after my initial onset of DM in 2007. Let’s see how much of an effort I can make this week.

goodbye

It’s probably no surprise but I am saying farewell to the Myositis Colorado blog and Facebook page.

Thank you to all those who’ve read my words, commented on posts, and have helped spread the message of Myositis Awareness.

Mo will continue to update the online resources and lead the Colorado KIT Group. As for me, I am starting a new adventure. I am grateful for the time we’ve shared together and I wish you all health, happiness, and courage.

Love, Nicole.