Me: Hey Internet, guess what!
You: What?
Me: I got my disabled parking spot approved the other day, hooray!
You: Congratulations…? Wait, why do you need a disabled parking spot?
Me: Oh. Well, I kinda omitted this from my blog for the past few years, but the muscles in my body are atrophying for reasons that doctors can’t pinpoint.
You: Errrr…
Me: It’s myopathy, unspecified. The genetic tests are negative for any of the known myopathies, and the muscle biopsy confirms that the muscle is deteriorating.
You: Wait, is there anything they can do about it?
Me: Well, they gave me a parking space!
You: That’s… nice?
Me: I thought so too, Alhamdulillah. 🙂
You: Why didn’t you say anything about this earlier?
Me: Well, I don’t like being negative and it’s hard to be positive about having rare, incurable and chronic muscle disease. But it could also be worse, so why complain about it? Alhamdulillah, I’ll be fine.
You: Why are you telling me now?
Me: Because I’ve only used my disabled parking three times, but each time I do I feel like the whole world is watching me and wondering why I’m behind the steering wheel instead of in a wheel chair.
You: Are you faking?
Me: Nope. My leg muscles are easily fatigued. I do stairs slowly and only as a last resort. I walk funny. I don’t lift things. Typing makes me tired. My phone is heavy.
You: To be fair, some of those Android phones are like trying to have a conversation on a reader’s digest.
Me: It’s an Iphone 5, the skinny one? I’m slowly developing T-rex arms. They’re functional, but largely ornamental. :p
You: I’m not sure what to say.
Me: Me neither, but I thought I’d say it, because denial ain’t just a river in Egypt and I may or may not have been paddling its waters in the rubber ducky of self-delusion.
You: You think you don’t have myopathy?
Me: No, I think I don’t need help. However, I am forced to reconsider my status as a superhuman when the grocery cart weighs a ton and my telekinesis abilities fail to guide it to the car accurately. I have no choice but to ask for help now, and it’s very hard for me to accept that.
You: Everyone needs help sometimes.
Me: Meh.
You: Do you need help? Is there anything I can do?
Me: Well, you can make dua. But that’s it, really. I’m not throwing a pity party, and I’m not accepting condolences.
You: Can I come and visit you?
Me: Only if you promise not to sit in awkward silence, or sigh dramatically, or cast pained, regretful glances in my direction.
You: I can do that.
Me: Good! Then we can still be friends. 🙂 Now, back to your regularly scheduled blog.
By Abez, the end.
Assalamualaikum wa rehmatullahi wa barakatuhu,
Sure wish I could visit! You’ll be in my duas insha’allah.
Hugs and kisses,
Internets (oh well, a part of it)
Walaikum Assalam Zari 🙂 If you’re ever in my part of the world, you come over for cupcakes, ok? 🙂
First you taught me that i cud be cool and be a hijabi at the same time, then you taught me i cud be a practicing muslim and not be ashamed of it, i did my salah sitting and thinking somehow it to be my fault and every time feeling guilty when i cudnt do sajdah the “proper” way, i thought abez does it too and it wasnt hard on me anymore, long long infact years ago you once had a small baby lizard visit you when you were in isb, lizards stopped freaking me out then, over the years i dont know in how many things you have inspired me, motivated me and iv learned hope and patience… yes thats what you are for me a true non fiction inspiration! 😀 Alhamdolillah for you!
JazakAllahuKheiran Nida- sounds like you’ve been around a very long time! Do you have a blog?
well i wud be wrong if i said no, but its more like a diary i have hardly written anything in it… but ur welcome to see it…http://platued.blogspot.com/
it is not going to happen anytime in near future, but i have thought about living in dubai just because your company provides affordable therapists – lol
so, if whenever I came there we can go go grocery shopping together and your job will only be to tell me silly jokes.
i think its a pretty good idea. right?RIGHT?
What kind of music do chiropractors listen to?
HIP-POP!!
(ow)
May Allah make it easy for you and reward you for your patience. Internet hugs too!
Ayesha: Sounds like a great idea- I’m especially good for groceries now that I get VIP parking 😉
two thumbs up for the chiropracter joke, I’m putting that one into my repertoire! :p
Khansa: Ameen, JazakAllahuKheiran 🙂
Also, Nida- I tried to view your blog but it said I didn’t have permission to?
Sorry about that, just added your email to the list
Abez, Masha’Allah, you are such a strong person and I never fail to be inspired whenever I visit your blog. May Allah ease your pain and difficulties. May He reward you in this life and the akhira for your continued patience and gratefulness. Ameen.
Hijabi Mommy: To be honest, if I was stronger then I wouldn’t be struggling with accepting Allah’s Qadr for me, but that’s a blog for another day.
But JazakAllahuKheiran for the duas, they are much, much appreciated. 🙂
Abez, may Allah keep you strong. May He preserve your faith and your wellbeing, and grant you closeness to Him.
Forgive me for going into specifics, but I’m a medical student, and you mentioned that the genetic tests were all negative – did you also have endocrine tests, e.g. thyroid etc.? Has that been looked into? This could give systemic effects as far as I understand it.
AssalamuAlaikum Saira- JazakAllahuKheiran for the duas, and Ameen! I don’t mind at all- the following have been checked and found to be either ne normal or not applicable to me:
thyroid (normal)
Fabry’s- negative
Pompe’s- negative
Gaucher’s- negative
MS- negative
Thanks Abez. I would really, really recommend finding the most qualified doctor in this field, if you haven’t already, even if you have to go abroad. These tests, to me, don’t sound exhaustive at all. I’m a bit doubtful about the diagnostic process used.
There are a number of other myopathies under many categories – inflammatory, endocrine, myasthenic, dystrophic, myotonic, channelopathies, and metabolic. All possibilities ought to be excluded using relevant tests, especially ones like polymyositis and dermatomyositis, [= idiopathic (of unknown cause] inflammatory myopathies] which are well known and manageable.
I may be wrong about your doctors but I would not stop looking until you’ve found the definite cause or at least seen the best doctor.
May Allah bless you and your family. <3
Zaroor, insha’allah 🙂
AssalamuAlaikum Saira- The UAE is has relatively small population, so we don’t have any tertiary referral centers for myopathy and whatnot. My US doctor is a university-based expert, but every time I want to see him I need to buy a plane ticket :s
Wa alaikum assalaam wa rahmatullah wa barakaatuh
I understand. But please do put it on your list of things to do ASAP! 🙂 Time is important here, even if you only go over to the US for thorough diagnostic tests and arrange management in the UAE.
And “You’re worth it”! 😀 You remind me of my mum, who just kept soldiering on with an injured shoulder for months (it needed surgery) – and the surgery didn’t stop her either! Sometimes you need to put your health first, and all the other things on your to do list second.
xxx
AssalamuAlaikum Saira- JazakAllahuKheiran for the advice. Moms are all the same to be honest. 🙂 I don’t have a sense of urgency to go the US again because I’ve been told it’s incurable anyways. Even if that were not true, I definitely don’t have the financial freedom to go there and seek expert treatment without having health insurance. That may be possible in the distant future, InshaAllah, but for now, I’m still functioning. 🙂 Alhamdulillah.
Duas are good though. 🙂
Wa alaikum assalaam wa rahmatullah,
I’d hate to be a nag, and of course you know your situation best. For some of these conditions there are management options even if not a cure, which you could probably get in the UAE – like steroid therapy or just occupational therapy / physio. May Allah make it easy for you. <3
AssalamuAlaikum Saira- don’t worry, you’re not being a nag. 🙂 I’ve been doing physio for a few years and that I think will be an ongoing thing. The problem with other management is that because I haven’t been able to find anyone who specialises in what ails me- I’m still looking though, JazakAllahukheiran 🙂
Salaams 🙂
I’ve been reading your blog for years now and just wanted to mention something. My husband has been having some problems for a few years and managed to get tested for mercury poisoning. For some reason, his amalgam fillings are leaching mercury into his blood and he has lethal levels. To look at him he seems fine, but his immune system is weakened and he could develop a terminal illness at any time. Scarily, mercury poisoning is often misdiagnosed as MS, fibromyalgia and many other disorders/ symptoms.
I wasn’t going to post but it’s all I have besides duaa. You really should take Saira’s advice – to seek out the problem (and then the remedy).
In the meantime you have unpasteurised honey and black seed that you can take. My husband has been taking raw apple cider vinegar as well and Ive started on live, refrigerated probiotics which are doing wonders for my health. I know it all sounds so random but probiotics are amazing for intestinal flora, which is supposedly good for a healthy immune system. Vinegar was also our Prophets favourite condiment and it helps to alkalize the body so that everything can function as it should without an overgrowth of harmful yeast and bacteria.
I also try to say this duaa:
Allahuma rabbi-nas adhhabal ba’sa, ashfi wa entashafi, la shifa’ illa shifa’uka shifa’ la yughadiru saqama.
Oh Allah! The Sustainer of Mankind! Remove the illness, cure the disease. You are the One Who cures. There is no cure except Your cure. Grant us a cure that leaves no illness. (Recommended to touch the area of pain with the right hand while reciting this supplication.)
I wish you well but keep in mind that you have 3 kids and a husband who need you to look after yourself so please do. Salaams sister xoxoxox
AssalamuAlaikum sister, jazakAllahuKheiran for the advice and the duas, they are very much appreciated.:)
I have a link I’d like to share, because I’m not sure if you are aware how many proponents of mercury toxicity use fraudulent testing methods to scare people into pursuing treatment. Yes, it is possible to have mercury poisoning, but given the prevalence of unreliable testing, it’s important to make sure your test was reliable before believing what you’ve been told about your mercury levels.
http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html
I do hope I haven’t offended you, and I am genuinely touched by the sincerity and care with which you’ve given me good advice. May Allah grant both of us shifa- your husband and I, and allow us to mee up in Jannah and have a good laugh about all of this later. 🙂
I started reading your entire family’s blogs when you and your sister were not even married. You, your sister and your mum’s blog posts used to be an important part of my day . I was there till Iman was born , your mum stopped updating i guess and groucy went private. But mostly i stopped because i was heartbroken with what Khalid and you were facing . And after so many years i came across this and once again i am heartbroken for you. May Allah give you super human strength i wish oh how i wish my prayers would somehow work . Love and Duas for you ❤️