My story

Hi, it’s Lulu here. I hope everyone is doing well. 

I’d like to take 10 minutes of your time and share my recent story with you. I hope you find the time to read it. 

Please know that this is not to depress you or ask for any pity…in fact I’d like the opposite and I hope you take my message at the end to heart. 

Here it goes…

To paint you a picture, I was a happy, healthy, 39 year-old mother of 3 amazing kids, married to a wonderful husband. I felt the best I’d ever felt and life was great. 

On October 5, 2022, exactly 8 months from today, my life completely changed when I developed a sore throat. Yes, that was my first COVID symptom. The next day, and continuing for a week, my symptoms drastically got worse – major fatigue, chills, fevers, cough, congestion, nausea, you name it. It was a typical covid case. Except it wasn’t. A week later, I didn’t really get much better. In fact, my symptoms changed and now suddenly I developed major migraines, substantial hair loss, muscle aches, joint pain, severe fatigue and I was so hypersensitive to sounds and lights that I could only tolerate being alone in the dark in my room. It wasn’t fun. This went on for a week, and then another and then another. I went to the Emergency Room of Amiri Hospital at this point because clearly there was something wrong with me. After all their testing, they sent me home and told me “Everything was fine, this happens to some people after COVID, and it will go away on it’s own. Just be patient”.

I believed them. They were the doctors and they knew best. My health condition dragged on into the following week and the week after that and so on. As you can imagine, everything had changed in my life by now. I couldn’t go to work, except for a day or two each week and only for a couple of hours each time. My usual extensive involvement in my children’s daily lives had to take a back seat. I couldn’t make it to family gatherings and forget any social commitments. Even having a few close friends over was out of the question for me. I was sick. But with what exactly? 

I went to see quite a few doctors- a neurologist, an internist, a psychiatrist, even a dermatologist. By the end of December I started developing a strange rash on my face, arms, neck and chest area. I did a lot of testing – MRI, X-ray, EKG, bloodwork, bloodwork, bloodwork. Everything came back normal. Long Covid was what I kept hearing from all the doctors. 

I accepted my fate, Long Covid it was and I’ll wait it out. I decided to take a pain suppressant from my psychiatrist to ease the constant body aches and it helped for a while. Until I realized I don’t want to just suppress my pain, I want to fix what’s wrong with me.  I decided to stop that medication, under his supervision, and instead focus on alternative therapies to help me cope. He suggested physical therapy and it was something I was reading could help, so I jumped on it. God sent me a guardian angel the day I walked into that rehabilitation center on April 4. After explaining all my symptoms up to this point and by my 3rd session with her, the physical therapist that was assigned to me suggested I see a rheumatologist. I scheduled the earliest appointment I could. My consultation was on May 8, 2023…7 months since I got covid. 

God sent me another guardian angel on this day. The rheumatologist believed she knew what I had but needed me to do just one more blood test to make sure. I did it. The result came out the next day. She called me and asked me to come to the hospital the following day to talk about the result. On May 10 I was finally properly diagnosed with something called Dermatomyositis. If you read about it, it sounds scary, and honestly it kind of is. It’s a chronic, rare, autoimmune disease that was triggered by me getting covid but probably started showing its specific symptoms a few months after I got covid and not really from the beginning in October. That’s why so many doctors couldn’t figure out what I had. I also did have many “Long Covid” symptoms that slightly overlap with this disease. 

Things quickly escalated from the day I was diagnosed, and my symptoms got worse. I had problems swallowing food and ended up developing dysphagia. I started experiencing acute shortness of breath. I was too weak to move around on my own that I needed a cane to walk around the house. 

I was admitted to Amiri Hospital on May 13, where I still am today, on heavy cortisone medication and a strong anti-inflammatory pill to reduce all the inflammation in my body. Unfortunately, after 2 weeks of that, my body stopped responding to the cortisone. The doctors put me on another treatment, IVIG which I just completed and I’m hoping my body has responded to. The next few days will tell us more. In the initial treatment phase of this disease, there’s a lot of trial and error in terms of tweaking the medication to best suit my body to stabilize my condition. They told me it will take a little time and I need to be patient. I have been waiting 7 months for someone to diagnose me and treat me, so I have no problem waiting as long as it means they’ll fix me. The medications I’m on right now have really brought down my immunity, so no visitors are allowed to see me, except my family to help me during the day. I’m so grateful to have an amazing support system of family and friends around me which I could not imagine going through all of this without. 

I’m very thankful to finally be correctly diagnosed and under treatment but I’m also so overwhelmed with everything that’s been happening. It has been challenging —physically, mentally and emotionally. The past 8 months have been a difficult journey and I know the next phase in my life will be a tough battle. But you guys know me, I’m a fighter, and I will overcome this. And to me, faith means believing in something even when you can’t see it. Faith is my belief in Allah and my religion. I have faith in Allah to guide me through life and all of the problems that come my way. While life isn’t perfect at the moment, and I am struggling, I still have strong faith that Allah has a plan for me. 

The intent of the above is not to scare you. I just wanted to send the following message out and I truly hope you apply it…

Life is beautiful and so precious. Please don’t ever take anything for granted in life, especially your health.

Surround yourself with loving family and friends always, because you will need them in your life.

If you ever want to do something, and you can, then do it today and don’t put it off for another time because nobody knows what tomorrow will bring.

Take care. Stay safe. Be healthy. 

Lulu Al-Issa

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

‎‏الله يحفظكم وأحبابكم ويعطيكم الصحة والعافية وراحة البال دائما يا رب ويبعدكم من كل شر.

(Written on June 5, 2023)