October 21, 2013

How to: have end stage renal failure and thrive!

This has nothing to do with my post but aren't Mimzy and Ocho cute, mA? :)

Salaam ya'll! Unfortunately being sick takes up a LOT of my time and thought. I don't let it take center-stage, per se, but it's always rearing it's ugly and annoying head. For example, Li'l Miss has her FIRST ever field trip to the local zoo (which is AWESOME btw!) and I can't take her. I am too weak, too tired, and just too, well, SICK to go. It sucks. I try to take it in stride and not let it get me down but you know, sometimes it just (cue whining) "doesn't seem FAIR!!!!".

However, for the most part I take this disease in stride. By the way, I have IgA Nephropathy, an auto-immune disease that causes my IgA proteins to destroy my nephrons or filtering units in my kidneys. :) I have End Stage Renal Failure from a) a return of my IgA Nephropathy, b) some acute rejection which damaged my transplant, c) long-term chronic rejection which is always eating away at any transplant and d) damage from repeated kidney and UTIs (urinary tract infections). I am SO aware of all the blessings Allah swt has graced me with. (I like ending sentences with prepositions so there!) I am grateful for all the wonderful things in my life and yes, even my kidney disease.

I could be sicker. I could have heart disease and if your transplant goes kaput, usually, so do you. :( I could have a really PAINFUL kidney disease like polycystic where you have so much pain and swelling. So alhamdulillah for it all! Here is a short list of how I cope:

1. Denial. Yep, good ol' fashioned denial. I ain't sick, I don't feel bad, and you can't make me! This works some of the time. During my less defeated by this disease moments I just carry on as if I have nothing wrong. I grocery shop. I clean house. I take Aaminah on really cool eid excursions. I travel for hours to go visit my husband. ;) Yeah those kind of things. Now, even in the midst of my denial, I have those reminders. Out of breath, muscle pain, debilitating fatigue. Just sometimes I'm strong enough to ignore it. This is really my preferred method of coping. :D

2. Changing my expectations. This one, I don't use as often but have to pull it out sometimes. Ya'll, I've told you before, I used to be a HORRID homemaker! I was ill-prepared for it; during the 80s and 90s we were never told "It's awesome to be a mom and there are blessings in taking care of your kids!" No, we were told, "go to college, work, keep your home immaculate, do the shopping the cleaning the cooking AND make your man feel like a man!" You know, all the Cosmo bullsh*t. Anyway I didn't want to be a homemaker, I failed at it miserably. I loved my boys, I was miserable in my marriage, and I was over-worked (and sick to boot).

Anyway that's a different story. I eventually learned the art of being a homemaker, of caring for your family through good healthy food prepared with love, that having a clean floor and clean, pressed clothes was a really awesome way to SHOW you love someone. I kept a spotless (more or less) house; dust dared not enter! Bathrooms and counters stayed clean. Dirty dishes? Not on my watch!

Let's just say all that's changed. :D I love even more now being a homemaker. Now, as a Muslim wife and mother, I see it as more than just an expression of love but also as ibadah (worship) of my Creator. If I do it with the intent to make my family happy, to give us a nice place to live and pray. :) But I've had to really lower my expectations and I'm finding out, that's ok. :)

Now if you were to stop by unannounced (oh please Allah don't! lol) you might find my carpet NOT freshly vacuumed that day. You will almost definitely find a few dishes in the sink and probably a bit of laundry (or a lot!) in the hamper. Even (gasp!) on the bathroom floor. You will not find filth alhamdulillah but mess? I'm pretty sure you will.

And I'm getting ok with it. It's hard, I want to operate on the same level I always have but I know that isn't possible. There are days I do good to make Aaminah food and the rest can just wait. I spend time with my daughter, I laugh with her, I make memories. :) I please my husband with my attitude, I encourage him, I send him messages and emails throughout the day to bridge the distance and let him feel my steadfastness and love. And it really does make up for the messy house. If I can't do them both, I choose to love my family over laundry.

3. Humor. I am the Great Deflector. :) I steer the conversation away with laughter, I do NOT like pity! I want some empathy, I want Aaminah's teachers and my friends and family to understand why I can't go on the field trip but I don't want them to feel sorry for me. I don't want them to feel sorry for Aaminah either because, despite my sickness, she has a great life. A mama who loves her and teaches her about Allah and His Prophets, a lot of family who thinks she's amazing, aunties and teachers and friends, oh my! So if the conversation gets too "poor Ummi of Aami!" I just turn it around. Soon we are all laughing and it just doensn't seem so bad.

4. Perspective. Yeah, I keep it all in place. I remember my goal for this life, to be a good Muslim, to raise my family, to be a good daughter and sister and wife. I work my hardest (MY hardest, not yours!) to fulfill my obligations which are also my joys. Most of the time. :) I fail but I try and I know Allah swt is merciful and He does NOT put on us more than we can bear! So with this little dose of perspective, I soldier on, I keep moving forward, and I just keep trying. :)

Please, make dua for me, that I start my shots soons (iA this week!) and that Allah swt gives me shifa. Amin!


Asmaa Umm Hamza said...

Wa alaikum salam wa rahamtullah
I will keep you in my dua ukhti, InshaAllah <3 and may Allah continue to bless you.

Umm Aaminah said...

Salaam sis and jak, I can use all the dua I can get! I know it's by the grace of Allah swt I am doing as well as I am and I am grateful for it. :)

Ma salaama...

contemplating muslimah said...

Salam alykum sis,
Thank you for sharing your experiences.
May Allah the Almighty strengthen you both physically and spiritually,
May he forgive you and have mercy upon you.May Allah appoint good people to support you and your children and finally May Allah make it all easy on you. Ameeeeen