Some Ups, Some Downs

Today is Sunday, August 27, 2023 and I know I said adios to PMR but I’m actually not done completely there just yet. This morning I had two appointments…The first was a follow-up with my dermatologist at 8:00 am in Abdulkareem AlSaeed Dermatology Center and the second was an appointment with a new occupational therapist at PMR to help work on my scoliosis at 12:00 pm. Let’s begin with my first appointment.

It was quite a wait before it was finally my turn to see my dermatologist. The second I walked into her office I could see her face light up with a big smile, and in return that put a smile on my face. She probably couldn’t see my smile as I was masked but I definitely smiled back. The reason she was happy to see me was because I have changed so much to her compared to the last two times she saw me…I had been there on a wheelchair, looking and feeling much weaker than I am today. Also, my skin has cleared up so much compared to the last time I was there so she was pleased to see that as well. I had my list of questions ready and we got into it right away. Overall she’s happy with how I’m progressing but I had a few minor concerns that I needed her help with. Even though my skin has cleared up from the rash, I’ve unfortunately developed a bad acne situation on my face. While I assumed the reason was that I’m constantly wearing a mask, she told me that it’s most likely due to my cortisone medication. She gave me a toner to apply and a cream to help clear it up. My other concern was my never-ending hair loss that I’ve been experiencing since I got COVID last year but has significantly increased the past 3 months. I’m thankful that it hasn’t been too drastic but it is considerable enough that I’ve noticed my hair progressively thinning and weakening. She explained that with dermatomyositis this could happen to some patients and sometimes the immunosuppressant medication I’m taking could play a role in that as well. She gave me a toner to apply to my scalp and an oil to apply twice a week to my hair…Hopefully they’ll help. Since my rash seems to be under control for now, except for some very minor redness on my knuckles, my doctor told me our next follow-up will be in three month’s time. ان شاء الله خير.

I was home by 10:00, rested for a bit then headed back out to my next appointment. When I had first started at PMR back in June, my PT and OT noticed that I have scoliosis in my back which I knew from the age of 18 that I had. It wasn’t severe enough that I needed surgery for it plus I was already developed that no back brace would have made any difference. Back then I was told by the doctors to just be careful and to try to always strengthen my back muscles. It hasn’t really bothered me since then and most of the time I even forget I have it. When my therapists noticed it, they told me that they could have one of the specialists there see me and she could help me correct it through certain exercises and movements. We agreed that that it was best for me to finish my 2- month Daily Care program first, then we’d arrange for these scoliosis sessions to begin…That time has come. I was extremely impressed with the therapist who saw me today. She came super prepared and so knowledgeable. She began by explaining what my scoliosis looked like exactly, what her plan is to fix it and how I’ll need to really work on the home exercises if I want to see a difference. She also explained that this would not be a quick process…It will take time before we start seeing a difference in my back. I’m ok with that. We’ll be using the Schroth Method which uses exercises customized for each patient to help return the curved spine to a more natural position. For now the plan is to meet once a week for the next few weeks and for me to work on my home program from session to session. ان شاء الله خير.

I’m super thankful that on a physical level I’m progressing in the right direction and there’s noticeable improvement…But on an mental an emotional level I haven’t been feeling good at all these days. My very dear friend’s nephew has been in the hospital for over a week now in an extremely critical state from an unexpected bacterial infection that came out of no where. This news has been extremely heartbreaking and devasting. As helpless as we may all feel at times like this I believe our prayers can go a long way. My heart goes out to this innocent little boy and his family for what they’re going through. Please pray for him. ربي يخفف عليه ويشافيه ويقوم بالسلامة ويصبر أهله ويرفع عنهم الهم والحزن.

إلهي أذهب البأس ربّ النّاس، يا رب اشف وأنت الشّافي، لا شفاء إلا شفاؤك، شفاءً لا يغادر سقماً، يا رب أذهب البأس ربّ النّاس، بيدك الشّفاء، لا كاشف له إلّا أنت يا رب العالمين، اللهم إنّي أسألك من عظيم لطفك وكرمك وسترك الجميل، أن تشفيه وتمدّه بالصحّة والعافية، لا ملجأ ولا منجا منك إلّا إليك، إنّك على كلّ شيءٍ قدير