Alhamdulillah! I’ve been upgraded!

There aren’t enough characters in the title limit to fully express how many Alhamdulillahs I would like to put in the title, so I have to settle for one.

So, Alhamdulillah, my neurologist in Chicago (who I visit this last week) has helped me clarify what exactly’s going on with my body.  To make a long story short, I do have muscle atrophy, but Alhamdulillah- it’s not from unspecified myopathy- it’s from my brain!

Yes, this is actually a better prognosis than before.  See, before I was told that my muscles were atrophying because there was an unknown problem with my muscles.

Now, it turns out that my muscles are atrophying because my brain is not communicating with them properly, and the reason for this is because I have:

  1. Autonomic Dysfunction, specifically Postural Orthostatic Tachycardia Syndrome
  2. Ehlers-Danlos Syndrome

I’ve leave you to the googles to figure it out.  Neither are curable, both can be severely debilitating but guess what- at least they’re both known disorders!  And, either one of which can be life-threatening due to complications, but neither are inevitably terminal in and of themselves! Alhamdulillah.

Did I say Alhamdulillah already?  Alhamdulillah.

To be frank, this doesn’t change much in terms of me maybe or maybe not dying.  Just in case you were hoping I’d be checking out soon and leaving my impressive bottle cap collection up for dibs.  Or, if you were hoping I’d be magically cured.  Having been to the neurology specialist in the US and been extensively poked, prodded, tested, and even strapped to a table that tilted like a carnival ride, I have the same medical issues that I left with, but with one important distinction.  I’ve been upgraded from unknown and possibly terminal, to just chronic and possibly life threatening.

Alhamdulillah. 🙂

Avatar

Abez

Abez is a 50% white, 50% Pakistani, Muslim hijabi Momma of Khalid, a special little boy with autism, and Iman, a special little girl with specially big hair.

  1. Avatar
    Razia

    Assalamualaikum!
    Alhamdulilah!I’m glad to read this. I was thinking about you and wondering how hard it must have been leaving your kids behind.

    I’m guessing you’re kind of relieved to at least be able to put a name to the condition that’s affecting you.

    Sending lots of positive energy your way!
    PS: I live on an island so if you ever need to come and chill and give your muscles a rest,you’re most welcome!!

  2. Avatar
    Sheema

    Salam, this is Shahid’s wife Sheema. I’m glad to hear that you’ve heard something reassuring! We have been making lots and lots of dua for you and your family. Hope that IA you will only get good news from now onwards. You are more than welcome at your house anytime you’re in Chicago. We wanted to meet up during your last visit, but you had quite the waiting list : )

  3. Avatar
    Muslimah

    Assalamu alaikum
    As
    Muslims we believe e erything is curable.

    It’s really a matter of asking Allah to help you find that cure.

    Allah has not sent any illness except that He has sent a cure for it.

    May Allah cure you completely. Ameen

  4. Avatar
    Muslimah

    P.S just because there is no known cure does not mean a cure does not exist. May Allah help you to find that cure. Ameen.

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    hannah

    Salamualaykum abez! SubhanAllah, for how many years have I been reading your blog and never put 2 and 2 2gether? Zeba is your name and not abez!? Oh Lord what dia collegeegree do for me?. Let me say that since xanga.com you have made a positive impact in my life and I will remember you in my duas, especially in my sajdas. Your blog and your son are sources of wisdom and a hiddn perspective to life I can’t get anywhere else and ….get this…….it’s free! No credit check either. Hugs. Salam.

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    baji

    Alhumdulillah! The devil you know (by name) is better than the one you don’t! Now we can issue concrete du’as for you instead of vague “please give her general overall you know whatever good health” prayers. 😉

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    Muslimah

    Assalamu alaikum Abez
    I apologise for the way I wrote my comments. I didnt write it outnproperly before posting them.

    Please forgive me for the way the comments came across but that was not my intention in the least bit.

    Jazakallah khair

  8. Avatar
    Abez

    JazakAllahuKheiran for all the duas and well wishes. 🙂

    Razia- as long as your island has free airfare, I’m in! :p

    Sheema- I’m terribly sorry we weren’t able to meet up- I don’t know if I was so busy as much as I was busy being sick. I spent most of my time asleep (picked up some wicked germs in London!) and the rest of the time trying to cram in last-minute shopping. 🙁

    Muslimah: I know what you mean, and I’m not at all offended. Knowing that Allah created every disease with a cure gives me hope too. And it also makes me *heart* medical researchers. Somewhere out there right now, someone could be working on the cure for autism right now, as well as autonomic dysfunction, InshaAllah. 🙂

    Hannah: LOL! If it’s any consolation, you’re not the only one who missed that. And some people really are named Abez. i think it was a small Biblical town? Incidentally, it’s also a fertilizer. :[

    Baji: I know, right! And least now I have a support group! And an awareness month! October! Hooray!

  9. Avatar
    Umm-Zakariya

    Salaams dear sis, , alhamduAllah, Allah has a plan, in due time u and ur beloved family will know, I am so proud of u for doing and going about this the way u have been doing it, inshAllah there will b a cure, love u sis xo

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    Lucia

    I’ve just found your blog today, led by your sweet mother, and I love it and instantly admire you! I love your clever writing, and wonderful witty humor, and genuinely sweet disposition. What an inspiration you are! I’m looking forward to diving into your archives and, of course, following the posts to come in the future. I’m glad you were able to get some answers in Chicago!

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    Ola Olanrewaju

    Abez Salam Alaykum. Be rest assured that if you can be “upgraded from unknown and possibly terminal, to just chronic and possibly life threatening” by Allah’s permission you can be upgraded further “mild and not life threatening”!

  12. Avatar
    S.

    May Allah bless you with a full and speedy recovery, and may you live to see beautiful grandchildren, along with countless other blessings in this world before leaving to the Next one.

  13. Avatar
    Bushra

    Salams Abez,

    Lots and lots of duas for you. I have learnt so much from you over the years reading your blog and believe that if anyone has strength, its you. Lots of days and regards to aniraz and your momma.

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