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!

Now you see me...

A'salaamu alaikum ya'll.

I am not even pretending to be perky and uber-upbeat. I really pasted the smile on after I saw what grimace I was wearing in the first pic. :-) I was past exhausted. My body doesn't wanna move sometimes. Is so weird, like I'm underwater and have weights tied to my ever muscle fiber. Sometimes I'll lie there and I'l hear a text come through and I just look at my phone and think, despairingly, do I have to MOVE to get it? And by move I mean lift my arm.

It's crazy. I've done dialysis, both modes (hemo and peritoneal). I've had a transplant, I've now done plasmapheresis which means I've done just about every modality of treatment available to a patient. Subhanallah. The tiredness I feel it overwhelming. It's a combination of the treatments themselves and my low redblood cell count (anemia) which has been dramatically worsened in the past 12 days by my condition and treatment. The plasma exchange damages the cells in the removal and spinning process. I'm down to 24% of my blood being RBC; typically a woman should be 40%, give or take. I usually hover around 35% so this is a big, fast drop for me!

Think running really hard uphill and everything taking that amount of effort. Yeah, nice. Going to the bathroom, in my small little room here, is a monumental task. If I already used that term forgive me. :) By the time I've plopped back down on the bed I'm out of breath and my heart rate is about 140 bpm. Subhanallah. Typically my hr with low exertion is 75. So just trying to give ya'll an idea of the stress my body is undergoing right now.

The treatment consists of 2 parts. Day one you get a 10 hour infusion of human immunoglobulin via iv. That in itself is hard for me because one, I have crappy veins and it took 15 attempts to place my last iv in my hand. It eventually went south after 7 days alhamdulillah and it was another 10 attempts to place a new line. My poor arms are dark purple with bruises. The prednisone I've been on for so long makes your tissue fragile and that includes your vasculature. So bad veins by birth and circumstances, great! :-)

Anyway so a 10 hour infusion one day of human immunoglobulin. I get this dose of antibodies to annoy/irritate the antibodies that are currently attacking my kidney. Hey, don't hate, it's their job! They are our front line of defense against infections and normally we love those little suckers but when they get miswired and attack our own bodies (which is what my original disease, Iga-immunoglobulin A- Nephropathy does anyway) it's a baaaaad thing.

So now my antibodies are damaged insha'allah and a bit swollen which makes the next step of treatment, day 2, work. The damaged antibodies spin out with the plasma and is discarded. This is how they are attempting to stop my rejection insha'Allah! Today is my fifth and insha'Allah final of the 2-part process and I'm ready to be done.

The treatment itself is a bit unnerving but mostly because when there is a calcium deficiency in your body you feel weird. By deficiency I mean blood serum. Our bodies need calcium for more than just bones, it's an intergral component of proper muscle functioning. The plasma exchange pulls of some of that calcium and it's lost and must be replaced. For some reason, I very susceptible and almost immediately when on the machine I begin to get very numb-tingly lips and feet. They slow the rate, they up the calcium and it abates. 3 minutes later it's back. So basically it's a huge mental feat for me to not let myself get freaked out.

Oh and you also get sooo cold! They do re-warm the blood/fluids going back in but not the exact temp and the first shots are cold. So it lowers your body temp and you have some weird shaking; poor body is saying, warm me up!!!! I use 2 blankets alhamdulillah. I'm normally hot by nature. :-)

I make dua and thikr, I text, I talk to the nurse occasionally. It takes about 1.5 hours to do my exchange and because I know the importance of proper calcium levels and I know the warning signs it's low, I am constantly aware. Subhanallah how the mind works! So it's a constant battle to keep my level correct without over-compensating.

2 treatments ago I crashed. I normally do not have high blood pressure but as a side effect of the MASSIVE doses of steroids I've been on, I have developed it secondarily. For several days I kept a severe headache and my pressure would steadily climb to 200/98. Alhamdulillah. So they put me on a blood pressure medication and I also take a diuretic to help me pass more fluid and not be overloaded.

So I go to treatment. My damaged (and damaging!) antibodies (housed snugly in my plasma) are spun out from my whole blood; the bad plasma/antibody mixture is pulled out into a collection bag and bottles of pure albumin (human protein) and sodium bicarb solution are added back in, in supposedly even weights. However, that day somehow my balance was off and I had taken those 2 meds which also drop your pressure.

Sisters, if you've even had a hypotensive episode (esp on dialysis) you'll never forget it. You feel as if you cannot breath (because you physically do not have enough blood volume to transport oxygen). You begin to hyperventilate (your body's attempt to right the imbalance) and your heart rate soars. You get pale, sweaty and clammy. Often you cramp up and pass out. Pretty yeah?

That happened to me a few times when I was on dialysis so I am aware of the signs and symptoms. I get back to my room post treatment and ya'll, I cannot move. My pressures are uber-low and my heart feels like it's gonna burst outta my chest. I tell my nurse after about 30 minutes and she isn't impressed. (The one and only nurse I had, I might add, that I did not appreciate their standard of care.) So I'm lying there, cannot move, cannot speak almost, it's a chore to form the words and spare the breath. I tell her I am dry, hear my voice? (it's suddnely hoarse), see my heart rate and low bp, can I please have some fluids? It's common sometimes in dialysis to get a bolus of fluid at the end if you are too dry.

She reluctantly, and after about 30 min, hangs a small bag but alhamdulillah at a fast drip. By this point it's been 3 hours or so of extreme physical discomfort and yes, some fear. I cannot breath well, I feel weak and shaky, I know my chemistries are wrong. Ya'll, I know my body! So I ask for my labs to be drawn. She comes back, 45 min later, and said the docs said they think I'm fine. Hmm really. Cause my doctores know me, they know I'm not all Chicken Little and the sky is falling! So I lie there, 5 hours now, unable to move. I have to go to the restroom and cannot, sisters, for the life of me, ask for a bedpan.

Another nurse comes in (they all know I'm self-sufficient and a non-complainer) and I explain how I am feeling again and that I must use the restroom. I tell her I feel weak and shaky and my bp is low blah blah blah. She escorts me to the restroom with the instructions to pull the cord if I need help.

***Gets a bit graphic here, read at will***

I sit on the toilet, well fall is more appropriate. My head spinning and I cannot sit upright. I lean to the side against the wall, and my world starts to go black. I try to even my breathing, bend over, anything, but this relentless feeling of "oh my god I'm gonna do an Elvis and do something unsightly in the bathroom!" is overwhelming. I am about to vomit and void myself and I can do nothing. I know if I don't lie down I'm falling, passing out in the loo :-) and I grab the call cord as I go down to the floor.

Please understand I'm not over-dramatizing this. I know what's happening to me, my blood pressure has bottomed out and ya'll it's scary. You feel as if you cannot breath because you cannot get enough oxygen to sustain your consciousness. I'm on my hands and knees, sisters, in the TOILET, with my bare bottom in the air and I.don't.care. I'm gasping for breath, bathed in sweat, and the intense shame I will feel later is just a thing of no consequence.

Oh how I've laughed since but not at the time! 4 nurses appear and masha'Allah they close the door. They are asking me, can you move, did you fall? And all I can think is, of course I can't move, I can't breathe! With supreme effort and the help of Allah swt I am able to get to the bed, at the point of passing out. I have oxygen placed on me, my blood pressure is almost too low to read, and I'm just past caring. Alhamdulillah getting laid down and the extra oxygen helps but I'm just out. My poor sister comes in at this time and I cannot even acknowledge her. She was so scared. :-(

So long story slightly short :-) they draw my labs. All my chemistries are off, I have to have iv potassium and magnesium and I don't remember what else. My calcium was low, my blood pressure almost nonexistant and I endured one of the scariest and most suprememly embarassing moments of my life. Subhanallah.

Fast forward to my treatment 2 days ago. I know my body and I AM my own advocate. I refused the bp meds as well as the diuretic. I drank loads and loads of fluids before I went and I requested extra potassium as well. I had the same tingling during treatment (much worse at beginning and end) but kept my composure and didn't let my mind tell me, heyyyy you gonna be ass in the air again sister, watch out! :-) I conquered my fear through the mercy of Allah swt and through using the brain He gave me. Alhamdulillah.

I was still supremely tired afterwards. My pressure again was low but not ridiculous. Like 98/59 for a bit, low for me but I was aware. I drank as soon as I got back in the room and I didn't get up for 4 hours even though my pressures were better. I knew I had refused the medications that would have put me over the limit and my body could compensate for the rest.

When my docs came in I told them I had refused the meds that morning. One looked concerned and asked why? I pointed out my pressures (low end of normal) and the fact that I was actually able to semi-recline and speak at the same time as proof. He listened and he respected my judgement. Masha'Allah. It feels very good to be listened to when you know you have a valid point. He agreed I had done the right thing and I knew I had and my body was telling me, Yay job well done!!!! :-)

My pressures have stayed low-normal since so I know I made the right choice. I will do the same today, refuse the meds, drink up, and make dua and ask Allah swt for patience and strength. I get to go home today sisters and I am so grateful! I will be tired and I'm very immuno-suppressed right now so for a couple of weeks, I'm homebound. Alhamdulillah. I don't have the strength to do anything anyway. But I know with the help of Allah swt, which comes in many forms, including remembering to tie our camels ;-), I will be ok insha'Allah. I have a long road of recovery, my future is still uncertain. Has the rejection fully stopped? Will I regain function? Will I need dialysis or more plasmapheresis or an even more strenuous treatment?

Only time will tell. By next week insha'Allah I should have a game plan. But for now, it's one day at a time, one treatment at at time, one smile, one book with Aaminah, one cuppa tea with friends.

And I'm more than ok with that. :-)  Ma salaama ya'll...

PS. I often re-read my post before putting it out there and please don't think I'm just whining. I think it's important for others to be aware of what can happen and to make informed decisions. To be part of their health care solution. I just hate that the whole post seems to be "poor me" and boo hoo hoo. Eh, you'll get over it. :D

PSS. And yeah, Cap'n and I have shared a hearty laugh over my "bottoms up" predicament. Subhanallah. What a mixture of hilarity and shame. :-)) I'm the hospital hijabi, no one enters my room, docs included, without knocking first. So for ME to be in such a compromised state... wellll let's just say I'm sure it added to the story. :-))

The kindness of "strangers"

A'salaamu alaikum ya'll. No this isn't the long-awaited post on plasmapharesis. Yes, I know you're super-sad. :-) This is about sisterhood.

So pretty masha'Allah! :-) My flowers from Sr. Jana.

Some of us, as converts, have experienced the warm fuzzies of such relationships at least early on in our journey. Unforunately many have not and my heart has always ached for them. I've just been blessed by the community I first converted in and even later, in MA, when I felt I didn't fit in as well, didn't belong, I was still able to find some like-minded and lovely sisters.

Today is in praise of sisterhood so no more nay-saying. Many of you all know Sr. Jana from her blog Solo Muslimah. Just last night I was reading a post of hers about some sadness she has in her life. I felt kind of unprepared, unsure what to say. I read the comment from Candice and it was so beautifully put I didn't add anything. I felt for her (unfortunately been there, done that) but I didn't comment. OK commenting is not mandatory but we are also friends on fb and I think she is an absolutely courageous and strong woman and I should have said so last night after reading her post.

I didn't, road not taken. Khalas.

So this morning I'm sitting here, feeling a bit sorry for myself (yes I do sometimes, I just don't publicize it). I was hot and itchy and tired. My body aches, I'm exhausted, I'm getting sick of my own company and I wanna go HOME. Yeah that kinda whinge-fest. ;-)

One of the volunteers comes to the door with a delivery. For me. Flowers. 3 beautiful pink roses with greenery and a ribbon. Also a card. Hmmm wonder who it's from???

Sr. Jana. Wow. Soooo let's recap. Last night I read her post and don't feel well-enough, mentally or physically to comment but afterwards felt guilty. I should have. This morning, even though her post last night was about enduring pain, I wake up to find beautiful flowers from her, my SISTER, whom I've never met in this life.

It' so humbling ya'll. This is how we MAKE sisterhood. It's by our choices. We can choose to go out of our way, give a smile, a friendly look, a hug, salaams. Or we can choose to, even without meaning to do so, withhold that gift of love and understanding.

So we all need to be aware, next time we aren't feelin' the love at our masjid, that it can start with ourselves and work down. :)

Sorry if this post isn't quite coherent; I took about a 3 hour break somewhere around "It's so humbling ya'll". I had sat up for an hour or so, typed, and I was literally drained. I am not asking for sympathy, rather for your understanding. :)

OK so part two of my post deals with a sweet young sister I met in MA at the Worcester Islamic Center. She is one of the cutest, most bubbly girls you would ever meet, Palestinian/American, passionate, and full of energy. I was blessed to meet her last Ramadhan there and we became friends on fb. I was gonna be her weight-loss coach (as I had helped A lose 40 lbs masha'allah) but then my life intervened, I moved away but we still stayed friends.

Btw, she's dropped like 40 pounds and looks awesome! Ya'll know I'm not all about looks here on UofA but feeling good about yourself, being healthy, and taking the best care of the body Allah has given us, those are important. I'm just so proud of her for sticking to her goals. :-)

OK so long story short, she had contacted my sister after I was hospitalized. She, too, sent me flowers, her well-wishes and dua, and also a box of chocolates. Healthy girl she is, wanted to send an Edible Arrangement (fresh fruit yum!) but she had missed their daily delivery. :-) It's ok, I always had a sweet to offer my visitors. :-)

Anyway she contacted me sister immediately and said if I were to need a kidney, or funds, or anything, to please contact her and and she was going to start a fund-raising drive. Masha'Allah. I just can't tell you the love and yes SISTERHOOD I felt from her offer. Which, now that I've been told work is a no-no, I might have to accept the sadaqa which is hard. Why do we, as Muslims, sincerely love to give sadaqa and zakaat but don't like to take it? Pride, I guess. Alhamdulillah.

So I'm feeling warm and fuzzy now ya'll. Well, not done yet, nope not in a looooong shot. A super-sweet (yes I keep saying it, get over it!) young sister, who also happens to be from MA but whom once again, I've never met in real life (a fellow blogger) offered me a kidney. Yep, straight up from her own body. She is young, a senior in college, and is on her way masha'Allah to divinity school. So yes some of you might know who I am speaking of but as she sent a private message I didn't want to embarass her. She didn't offer this for any kind of compensation, or for praise from me or anyone else.

She did it fi sabilillah. For a sister, yes a SISTER, she has never met. Subhanallah. So my close friends and family or even people who knows me in real life (eek I hate that term cause I'm the same here and there!) I can get. They know me, see my character, I've babysat their kids, gave thems salaams in the masjid, whatever. But this young sister, so very bright masha'Allah and so full of promise for her future and insha'Allah the wonderful things she is capable of doing for our ummah, has offered a tremendous gift.

I am humbled. I keep saying it but only because it's true. It's been hard these past 2 weeks, I had a couple of scary days, one of the biggest worryies being about Aaminah and her future, but through it all, I've had support, love, prayers, kind thoughts, and yes, actions. Intentions well-placed AND followed through.

Sisters, I know we get rewarded for our firm intentions, our good and pure niyyat to do a thing for Allah. But when we follow through, oh the reward for ourselves and to others, it's priceless. I hope I don't need a new kidney, I pray I get strong enough again to provide for me and Aaminah, I desperately pray to be well enough very soon to leave the hospital. However, knowing I have so many sisters (and yes, my non-Muslims friends and family too) who love me and care for me like this, well it's indescribable.

So thank you from the bottom of my heart for all of your kind words, your dua, your support. Thank you all for taking time to read my blog, it's surely helped with the cabin fever I've experienced here :) or the S.H.U. (secure housing unit) as Cap'n puts it.

May Allah swt bless you all and let us remember to always do good for HIS sake. Ma salaama ya'll.

Picture pages

A'salaamu alaikum ya'll. Had treatment today, past exhausted. Gonna post in-depth about it later insha'Allah. As a reference for other who have to go through it. As for now, even sitting up to type is taxing my strength. The treatment damages your red blood cells which are the transporters for the body so I cannot transport oxygen or waste well. Insha'Allah with time I'll get stronger.

For now, wanna share some pics of Li'l Miss, Her Royal Highness, Aami-mami, whatever you wanna call her. My friend has taken them. I miss her so much.

Dowwwwwn the slide!

Awwww sooo sweet masha'Allah!

Little Miss Smiles

Exhausted. :-(

She adores Charlie but is giving a crazy look.

Her buddy Charlie with HIS buddy, dog. :-)

Possibly, a bandit. :-)

Ma salaam and don't forget to say masha'Allah!

Dua, please

My empty (unmade, ha!) bed or alternate title, where I should be parking my happy behind right now instead of behind my laptop. :-) Yeah, that. Praise Allah for private rooms!!!

A'salaamu alaikum ya'll. So I'll be here until at least the end of next week (Friday) and quite possibly longer. 2 weeks in the hospital, 2 weeks away from Aaminah, my home, my job, my life. Alhamdulillah. My kidney is just not responding to the treatment (at all) and the doctors are hoping the 2 extra treatments of IV immunoglobulin and plasmapharesis will be effective. Ya Allah, amin!

Cap'n already had a visitor visa interview on Monday to come over and meet 'n greet my family and for us to meet in person. Especially now, me travelling for us to get married there is just not gonna happen. At least not for a while (if at all) and this is a huge strain on both of us. So we had already set up an interview for Monday. I had my doctor write a note which has been faxed, explaining the gravity of my health situation. "Stable but in very serious condition". I am sick, khalas, so I can at least hope to get a small benefit from it. If they approve his visitor visa application so he can come see his extremely sick fiancee, it will jump start this whole process.

As you probably know, until you meet in person, face to face, you cannot begin any immigration proceedings. Well we speak daily on the phone, text, email but we haven't met face-to-face. We intended to in January but his visitor visa was denied. :-( Alhamdulillah. So we made plans for me to travel to see him in February (put off bec of my job alhamdulillah which enables me to travel!) and then circumstances pushed it to March. OK now it's March and we had planned on his visitor visa interview and if denied, I would just immediately book a flight and go, get married, start our processing, and take it from there.

Can't happen now. I sincerely hope the interviewer at the consulate is cognizant of the fact I cannot travel and he has to come here in order for us to meet. Otherwise, especially if my kidney does not improve, I cannot travel. I'll be on dialysis or at least too ill to be away from standardized, affordable medical care.

So much is riding on him getting to come here. Such as, the start of our life together :) and me having a help-mate, a husband, a friend, a companion. Oh yeah, a husband. So please make dua for us that he is granted this visa. I have been making dua, asking Allah to please grant me shifa, protect my family and loved ones, and let Cap'n come. I would like to ask everyone reading this to please do the same and especially remember Aaminah in your dua. She is being taken EXCELLENT care of but she needs her mama.

Last night my sister brought her by to tell me goodnight. She saw me sitting in the waiting area (Oh how hard it was to walk downstairs, out of breath, no energy) but she saw me before I saw her and yelled, "Mama!" and came running and hugging and kissing. Wallah it's enough to break your heart. I am sure more than a few bystanders were touched as well by her poignant call. I know it made my heart skip a beat (or two).

Oh on a different front, hygiene. Hospital hygiene. Can you say non-existant?? Well for me it's very difficult. I have the in-dwelling vascular catheter in my upper thigh which goes straight into a main vein. So it's imperative to keep it dry and clean. No water can touch it, only sterile drapes and environment. :-( So baths and even showers are out. I tried the body wash clothes but for real, they smell like nasty baby wipes and it's just gross. I've done the "stand in an inch of hot water and wash off with a damp soapy cloth" but again, no real joy.

I also do not wear typical hospital clothes. I have my go-to outfit for the hospital. I wear wide, soft black pants, an underdress that is a big snug, and then an overshirt with long sleeves, past my knees. Topped off by no other than my black khimar, 24/7. Yes. So now I am reaching that stage where I need a change of clothes as well because I cannot stand to be unclean or immodest. I hate hospital gowns with a passion. Rough, scratchy, immodest... so I think I'll get a friend to pick up lounge-y clothes for me today at home, take this one and wash it and bring it back. It's cute, comfy, modest and makes me feel like less of a patient although I know very well that I am one. :-)

Wow, why am I up so early blogging?? Well doctors and nurses have to come in at all hours, I have lots of time to rest (typically) and that equals a blog post at 6:46 am. Keeping in mind the time changed today and it's really 5:46 am to my body and brain. :-)

Alright pretty sure I've moaned on long enough now. I have been keeping a headache, stiff neck, etc. and my go-to treatment (a bath) is a no-no now so I've been depending on tylenol. :-( I hate to take more meds, I'm on an enormous amount now. Actually I'll go over them with you so you can get a feel:

Prograf, new anti-rejection med*
Myfortic, anti-rejection med
MASSIVE doses of prednisone yay me. No not really except insha'Allah it will work!
Spironolactone, diuretic
Magnesium oxide*
Nexxium (for stomach pain)
IV Immunoglobulin (human antibodies ewwwww lol)*
Albumin (human protein ewwww lol) to replace plasma lost in exchange*
tylenol and bendaryl, pre-medication for the antibody treatment so only on those days*
IV blood pressure meds* secondary to the high steroids so i'A will go away after but time will tell
IV calcium (on plasmapharesis days)*
Intramuscular insulin (for my newly developed diabetes secondary to high steroid use so i'A temporary)*
Potassium citrate or chloride, depending on my blood chemistries
Sodium bicarb*
A one time dose of morphine which made me LOOPY and caused me to sing a response to my sister afterwards. I've stuck with percocet and tylenol since, thankyouverymuch*

Ok so all items * are new. Alhamdulillah for modern medicine and the knowledge Allah swt gives human to better our condition. Alhamdulillah for the gift of dua to beseech Allah to help us in our times of trouble.

Okey dokey, I think that's enough. My head is aching (surprise) and probably tap, tap, tapping away at the keyboard isn't the most conducive thing to helping it go away. A nice cuppa milky tea, however, would do the trick. I need tea!!!!!!!!! :-)

Please, just remember my family and I in your dua. Cap'n and the stress he is facing, Aaminah and her tender little heart, and yes, my transplanted buddy. :-) Keep us all in your prayers.

Ma salaama ya'll....

The secret to my happiness, even in hard times

A'salaamu alaikum ya'll. Here is a little glimpse into how I stayed positive today:

My sister, the photographer/writer/mother/person extraordinnaire with Aaminah. She picked up Aaminah and took her out all day and even brought her to the hospital twice to see me. :-)

Left on my fridge by my sister, niece and niece (in law!) along with little Aaminah. They came and unpacked a lot of our stuff from Massachusetts. Masha'Allah! All while I am in the hospital, unable to help at all.

So there is a whole lot more but today, those 2 stood out. :-) The love my sister has for me and my daughter and just how caring my family is towards me. I feel as if I sometimes take them for granted or don't spend enough time with them. At times, due to the differences in our religions, it seems hard to make the family ties work. We love each other but view life from different perspectives and it can make it less than comfortable sometimes.

But we are family and we love each other. I am blessed. :-)

Health update and miscellany

A'salaamu alaikum ya'll. Wow a lot has happened, good and bad. Let's get the bad out of the way. I have very bad veins from years of over-use and prednisone therapy which really weakens them. End result, I have 2 ivs in my arms, about 10 places where my veins blew and I know have lovely deep dark blue bruises, and I've ran out of access sites. I also have a cath placed in my groin, a long flexible tube with which to do my plasmapharesis treatments. Like dialysis treatment but it spins out my plasma to remove the offending antibodies. On the off days I take an IV immunoglobulin treatment to irritate those bad antibodies so they will swell and more easily be removed insha'allah by the treatment on the following day.

I'll be here til Tuesday more than like, that's a week and some change. I really miss Aaminah. I keep waking up thinking the alarm going off will bother her but of course she isn't here sleeping with me. :-( I have wonderful friends masha'Allah who are keeping her (the sister I stayed with for so long) may Allah swt bless her and her family, amin!

I'm on a massive dose of steroids which has so many bad side-effects but insha'Allah will really kick the cellular rejection in the butt so it's worth it. I am considering however putting off my wedding. The side-effects from steroids are very unpleasant. Facial, neck and trunchal swelling (oh joy!) as well as red face and over heating. Increased body hair growth and acne can occur as well. I just don't want to feel ugly and self-concious when I meet Cap'n. I think this is a natural feeling. It's not that I don't think he can handle it, it's just my vanity speaking. So I am unsure at this point if we will marry in March or not. I just want to look the best I can look; trust me, I'm not asking for much here!!! lol

I also have started diabetes treatment with insulin injections. Eek! Alhamdulillah the docs said it's a common reaction to the crazy high doses of steroids so it should calm down within a short time. I was preparing myself for actually having diabetes so file this under "good news".

It was also a wake up call, sisters. Type II diabetes is totally preventable. Lose weight, exercise, eat better. Nothing weird or strenuous involved. Walk, be active, limit your sugar and carbs but not like a strict diet, just healthier eating. Since I've started working my diet has went downhill. We eat lunch out almost every day. Now a co-worker and I share our meals. We are food twins (well she eats pork at her home of course) but otherwise we both love the same things. So we can get a meal for one and share it so at least the unhealthiness of the whole affair is somewhat diluted.

Also when I get ill (with kidney failure) I lose most of my appetite. Food is no longer so appealing and even if it is, I can only eat a few bites and I'm full. To be honest I think that is a good thing as well, no complaints here except for the reason. :-) Now let's factor in the hospital food. Oh mama! Actually a few things have been tasty and they've added turkey bacon for the first time ever so I do get one little thin slice at breakfast. Gives a bit of taste to my reduced sodium fare. :-)

Wow this post is all over the place. I'm on a steroid high right now so forgive. Alright prognosis: still unsure. We are hoping to stop this rejection and possibly reclaim some lost ground. Just not sure if that can happen, will know more next week. I am trying to stay positive sisters and make lots of dua. I firmly believe this has been, overall, a positive thing for me.

It is giving me a new appreication for my transplant and life in general. Reminded me how tenuous our health can be, a lesson I should have well-learned by now. :-) It has brought me closer to Allah in that I know my life and death is in His hands and has been a wonderful way to bring me back to the power and serenity of beseeching the One for all my needs. We get so caught up in "look what I'm doing" we over look that we can do NOTHING without Allah. So anytime I have hardship I sincerely try to look for the lesson in it. Here is what I've came away with (list time):

1. As I said, a renewed appreciation for my health.
2. Feeling stronger Islamically and a definite strengthening in my iman.
3. I truly believe in Allah's promise after hardship there is ease. Some times it's easier to cling to than at other times, as we are human, but this episode has really shown me this.
4. I am sooo blessed by my friends and family. I've had visitors and phone calls and prayers. I have 8 flower arrangements and candy (eek! lol) and balloons. Cards and well-wishes. It just makes me want to cry when I realize how loved I am!
5. It's given me a much-needed reset from work and given me time to blog to you guys. OK so the last one, I'm really not grateful for, but I am grateful to be able to fill some of my idle hours by updating you guys. :-) But it's not worth being sick for! LOL
6. It has made me much more concious of the fact that I can wail and moan about my situation but if I'm not gonna be pro-active then I am the problem. So yeah, I have kidney disease. Yeah, I have blah blah blah. But I can be healthier, more active, and lose a bit of weight. I can do things to make it easier on my transplant to work well for a long time.

Please make dua that Allah swt strengthens me in my desires to make positive changes. that I am more mindful of my body and it's rights over me, that I find a better balance between my obligations so I feel I am being a full person not just an automatron, work work work work work. :-) Grateful for the job but definitely the stress of how much I've worked, coupled with my own inability to prioritize, helped set this stage for where I am now. Sick, in the hospital, away from my daughter, my job, my home.

Thank you all for your prayers, thank you for reading, and thank you for being my sisters (and brothers) in Islam. Allah does not burden a body with more than it can take and I am grateful past words that He has found me up to the challenges He has set for me.

My flower, baloon, and card corner. I did have the flowers over my a/c vent til I realized I was having an allergic reaction to the pollen I was shooting out all over my room! lol Allergy resolved. :-)



Eye candy! I had bought this bag last year but A didn't like it, too blingy. I gave it to my mom but she's pretty plain jane. She gave it back, cue happy day!

This is the bling-y keychain. Cute yes? I love this bag and Cap'n doesn't have an aversion to me carrying it so it's all good. :-) I joke I'm like a mullet (bizness up front but party in the back!) I'm all bizness up top (abaya) but my accessories bring the party (cute shoes and bags). I like being a woman. :-)

Ma salaama ya'll!

Favorite Qur'an verses/hadith

A'salaamu alaikum ya'll. So I'm facing some issues right now (what believer doesn't???) and I do indeed take comfort in the words from the Qur'an. I want to post some of my favorites right now and insha'Allah it can serve as a reminder to us all, in good times AND in bad.

"Verily, after hardship there is ease." Qur'an 94:6

"Bear with patience whatever befalls you" Qur'an 31:17

"And put your trust in ALLAH if you are a believer indeed" Qur'an 5:23

""No calamity befalls on earth or in yourselves but is inscribed in the Book of Decrees – before We bring it into existence." Qur'an 57:22

"Verily, in the remembrance of Allah do hearts find rest." Qur'an 13:28

"Therefore remember Me and I will remember you…" Qur'an 2:152

The Prophet (pbuh) said, "Whoever Allah wishes good for, He inflicts him (with hardship)." [Bukhari]

I've had some issues I've been dealing with and I will admit there are times when I have forgotten to turn in everything to my Creator. I find when I read verses such as these, it serves as a great reminder and helps me to trust in Allah and His grace and providence.

One issue is my transplant. I've been having some pain around my transplant site and they've schedule and ultrasound and clinic appointment tomorrow. My creatnine has crept up again, 1.97 which is almost 2.0 (yeah duh! lol). That is kinda the number where they say, Oh snap, kidney looks like it might be failing.

Just make du'a for me, sisters, that I come through these hardships with stronger iman and even more faith and trust in the qadr of Allah. And while we're at it, please make dua' for a very nice Persian sister I've met the past 2 Ramadhans at my masjid. She's so kind masha'Allah and she asked me to make du'a for her sons, that they become strong in their faith.

It touched a chord in me. I am always humbled by those with strong faith, who turn first to Allah in their hearts when trouble strikes them. And her asking me to pray for her and her sons... it humbled me, sisters. So please, if you can remember. make du'a for this sisters and ask Allah to grant her requests and also remember me to Allah.

Jazakum Allahu khair!

UPDATE: I just heard our brothers and sisters in Libya are liberated! The tyrant Ghadafi is gone! Allahuakbar! Allahuakbar!! Allahuakbar!!! May Allah swt guide their new leaders to institute laws that are just and equitable for all and free all our ummah from persecution, amin!

A sense of accomplishment

I love the whole 50's housewife look from the lipstick to the apron. :-)

Alternate title: It doesn't take much :-))

A'salaamu alaikum ya'll and good morning! Yeah, technically it's still morning (10:22 am) but for Muslims, our day starts waaaay earlier. Say before sunrise actually. The first of our five obligatory daily prayers, Fajr, is prayed before the dawn. Masha'allah my husband stays up but after I make him some strong, milky tea (or coffee if his stomach permits!) I usually crawl back into bed.

Alhamdulillah my husband tries to implement the sunnah in his life. It is a sunnah of our beloved Prophet saws to go to bed after Isha and stay away after Fajr. Unfortunately this is one sunnah I have had trouble with. See, I like my quiet time. Alone. Completely. So I stay up til about midnight (now that Isha is closer to 10 pm) so I can have that time. Alone. Yeah. :-D

I always digress; I guess that should just be a regular feature, my introductory ramble. lol

                    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

As most of ya'll know, I battle kidney disease. Yeah, I'm sounding dramatic today. BATTLING KIDNEY DISEASE. However, it really does impact my daily life, more now as I've gotten older, fatter, and had so many health issues in the past 1.5 years. One aspect of my life where I've let it take control is in home maintenance, cleaning, and upkeep.

Wow, that sounds so official: The Department of Home Maintenance, Cleaning, and Upkeep. Yeah, I know Upkeep and Maintenance are synonyms but to me, maintenance is mechanical issues and upkeep is the deep, sporadic cleaning. Sorry for the definitions, but just so we are all on the same page. :-D

As I was saying, the DHMC&U has suffered greatly. I wasn't able to hire an interim director and my subordinates balked and would have mutinied, had we been aboard ship. As it was, I am just met with whining and general refusal to do said chores.

However, the past couple of weeks I've had more energy than I had been experiencing and I'm trying to take advantage of it! The other day I cleaned all the applicances and wiped down the kitchen cabinets; I've been vacuuming twice daily (morning and after supper) and just in general trying t

Let's just do a list, looks more impressive that way! What I've accomplished extra (not dishes, cooking, shopping, doctor appointments, playing with Aaminah, chauffeuring kids to school and activities, etc. etc. etc.)

1. Cleaned outside of all appliances and wiped down kitchen cabinets

2. Vacuum twice daily on most days.

3. Keep Aaminah's toys in the correct bin. You know, Mrs. Potato Head's pieces in her heiney, all small toys in one bin, all pretend jewelry and purses in another, blocks separated by type. :-) I loooove to do those things!

4. Went through Her Highness's clothing and took out TWO GARBAGE BAGS FULL of 24mo to 3T fall/winter clothing, alhamdulillah. AND found a family in need here to pass them on to, alhamdulillah!

5. Keeping the laundry to a small hill instead of a mountain. :-D

6. Washed our propane grill we bought last year. It had a layer of pollen and dust embedded in the light sheen of grease which always seems to coat these things. A pot of soapy water and a few of clean to rinse and voila! looks brand new again. :-)

7. Polished my leather sofa and love seat (and leather footstool) with lemon oil. Polished every surface except the back of the couch because it is against a wall and I didn't want to move it. ;-)

8. Took car through super-fun power washer (Aaminah loved it almost as much as I do LOL) and then vacuumed it thoroughly. It feels great to have a shiny, pretty car. :-)

Hmmm I wish I had more to pad my list but you know what? I've really lightened up on myself. When it was just me and Aaminah, with my boys at times, life was so much easier in terms of housework. Now, to keep a family of 6 fed is a chore in itself between the cooking, the shopping, the schlepping. :-D

My wish list:

1. Clean off top of my dresser.... eek! It has clothes on top along with some various and sundry junk items. Our apartment is not large, a 3BR for 6 people. It wasn't designed very efficiently and what space is here is lost in weird hallways (3 of them!) and a strange kitchen and bath.

So closet space is non-existent almost. Our walk-in closet is designed so weird you can't really store much in it. Also I get vertigo easily and I can't look up to the (too high for me to reach) rack because I get sick. :-))

2. Go through my clothes... ya Allah. What a chore that will be! I have sooo many shalwar kameez, abayaat, etc but I'm too chub for most of them right now. Some, due to my husband's preferences, I will never wear again so boo hoo. I need to find them a new home before they are so out-of-style no one wants them. :-)

3. Clean all the baseboards. Yep, pet peeve.

4. Do summer shopping for my family. I HATE THIS! Aaminah is a breeze and cheap, A is easy unless he wants some shalwar for under his qamis (thobe). Hard to source and the last ones I bought were uber-cheap material. :-( Yousef is easy but the girls.... Oh my!!!! Almost impossible to find modest affordable clothing. I think we'll be getting them abayaat from now on; we'll see how that works.

As Muslims, our first priority is to dress them modestly. We are finding it increasingly hard, especially with our budget. I simply can't pay $40 for a long skirt and another $40 or so for a tunic top. Which aren't easy to find this season anyway.

In the past, we've done dresses as shirts with a long sleeve underneath. However, the undershirts are very snug on their arms which isn't modest. The pants they wear underneath show their legs. We are commanded by Allah not to show our shape; my stepdaughters both wear hijab and are "of age" so it's not something we take lightly. We want to have a clear conscience when we stand in front of Allah.

My husband and I both would be happy dressing them in the large legged pants like you find on Shukr but we just can't swing the cost. One outfit there is $70 to $100 easily. Just not do-able. So it's off to search online for modest, affordable clothing in the correct sizes. Insha'Allah I'm successful!!! :-)

Ma salaama....

Don't try this...

(For sale on ETSY) Yeah, I also had a CT scan of my head... oh the fun I had!!!! :-)

A'salaamu alaikum ya'll. Soooooo here's a little scenario for ya: Go to the ER because you have crazy high blood pressure (188/113 yikes!) and during your little pre-exam work-up, let it be known that in addition to the throbbing headache you are also having some chest pain. No, not CHEST pain, nurse, but pain that is in my chest area. No, I don't mean like heart attack pain, just a pain that's..... well yes, it's IN my chest but not chest pain, get it?

No they don't. :-)) You get whisked back immediately, thrown on an ekg machine and hooked up to the heart monitor. Despite your protests that any amount of enteric coated aspirin will rip your insides apart, you are given an aspirin (and do swalllow because by now you are thinking, well what IF?) but alhamdulillah keep your presence of mind to refuse the nitroglycerin.

LOL LOL LOL LOL LOL LOL LOL LOL

In short, I spent 2 days in the hospital, was given a medically-induced stress test (not comfy but not horrible) and treated like a serious invalid. Every time a different doctor came in and said, "So it seems chest pain brought you in?" you realize you are fighting a losing battle. "No, actually it was my ridiculously high blood pressure, coupled with the fact that I had a stroke in '97 and a pounding headache for 3 days, that brought me in."

"Ohhh so the headache pain?"

"Nooooooooo" even more firmly. "I don't come to the hospital for pain. I came because I have a history of STROKE and my blood pressure was 188/114. That's all."

Uh huh. Seems they don't believe you. lol So now, in addition to just trying to get over my rejection episode, I'm trying to recover from severe gastritis brought on by the aspirin. The aspirin I told them I was told to never take by my gastro docs because I have stomach issues (mainly from dialysis complications) but alhamdulillah....

ER Doc (who happens to be a nice Muslim boy masha'Allah) "Oh I think maybe you should have them mark in your chart that you are sensitive to aspirin".

Me "Um, yeah, I'll do that". LOL

So insha'Allah this is the last of all the exciting health stuff for a while. This one was just so comical I had to share it. :-) Ma salaama ya'll....

One track mind ya'll

This pic just looks so tranquil; I wish I could bury my toes in the sand and listen to nothing but the waves and the wind. :-)

A'salaamu alaikum. So I really don't wanna just talk kidney, kidney, kidney but of course this is a big part of my life (everyday) but really right now. Mostly because I am dealing with the effects of the prednisone and it ain't a going so well!!! Alhamdulillah my swelling is much less this time than anticipated (maybe bec I've been on it for 9 years now) but my mood swings are Cray-Zay. Yeah, it needs 2 capitals AND the phoenetic spelling. :-D

Alhamdulillah I a) warned A that my normal pleasant good nature might be a bit "tetchy" and b) he took said warnings to heart. I've been a bit over-emotional and just get annoyed soooo easy!!! I think as I get older I get a little more inflexible anyway and this just makes me even less tolerant. :-( Also in my defense the kids were reallllllllly something today and it took every ounce of willpower to not do something drastic and illegal. :-) Alhamdulillah the girls are generally helpful but they were picking on each other today. Masha'Allah Aaminah is just a little angel because hey, she's only two and super-sweet and funny on any given day.

Anyway I've had this pounding headache at the base of my skull for a few days. Worse when I feel stressed. Hmmm that's great. So I decide to check my blood pressure today. It was high. Pretty high anyway but very high for me and REALLY high to be a transplant patient as we have to baby our kidney. It was 160/99 subhanallah. I usually run 115/72 or so. Alhamdulillah. I'll call the dr tomorrow probably not tonight. No pharmacy is open 24 hours here so there is really no benefit for me. I am not going into the ER for elevated BP when I've dealt with it for 3 days unknowingly.

OK so that's my health update. Still waiting on my biopsy results (pathologist on vacation? dunno no report is in system yet, FINAL report that is) so I don't have a clear-cut plan yet. Insha'Allah khair... :-)

Hmmm on a separate note I made a really lovely dinner last night which carried over as leftovers tonight. Yes, double score! I wanted to roast a chicken and when I was looking for a bird I found a Perdue brand, roast-in-bag deal, all vegetarian-fed, no hormones, blah blah blah. Seemed nice, I didn't have to season it so thought good to go. Bought a huge container of Sabra hummus (yes once again, I can make it but I didn't HAVE to, see the point? lol), got some pita all hot and toasty, roasted brussel sprouts (thanks to Steph for that idea) with Maine carola potatoes, onions, carrots, and a wee bit o' garlic.

We had an olive assortment with it and, the coup-de-tat, homemade cornbread dressin'. Yum yum, you know the sage-y, peppery kind? Southern style, ya'll. It was great... (sigh.....) Anyway it was a nice mix of Mediterranean and Southern American food and we all went away happy as clams who really can't be that happy anyway but I guess it looks like they smile. :-)

I felt a little guilty not having any witty, insightful, or just plain interesting posts but I'm just being kinda low key; you know, taking it easy, cooking, cleaning, laundry, shopping, caring for Aaminah and A and the kids, trying to take care of my health... :-) Sorry just trying to give myself a nice little pat on the back. lol

Alrighty guess this'll have to do. Gonna watch an epi or so of "Lost" and then maybe sleep tonight? Yeah the insomnia is getting to me too; I sleep 4 hours a night and happy if I can force that. I will miss my prednisone-fueled energy but hey, not that much!!!

Ma salaama ya'll....

Rejection and meds and infections oh my!

A'salaamu alaikum ya'll. This is just a quick update as I'm tirrrrred. Sorry for the lack of posts; I went to the hospital early Thursday morning after my niggling suspicion about an infection turned into proof. My immunosuppresant therapy is pretty high right now (hence my immune system is low) and an opportunistic little bug decided to set up shop in my bladder. AGAIN.

Anyway good news it isn't the resistant e. coli I seem to always grow, it's just your plain garden-variety e. coli. Yay! Which means after I did my 3 days stint in the hospital with iv meds now I get to come home and take a MONTH'S worth by mouth. Meh, whaddya do? Alhamdulillah for it all.

So to recap: I'm back home, I am still in my rejection episode but alhamdulillah I've regained some lost function already which is AWESOME, but I still don't know if it's chronic rejection (which is not curable) or if it's an acute case which means it flared up for some reason but the meds can stamp it out. Insha'Allah the latter but Allahu alim.

Gonna keep this short so I can get some sleep. For some reason up here, they only have shared rooms so I've not been so well-rested if you can imagine! Oh and I missed being connected. A and I just ordered a new laptop and wouldn't you know, it arrived at Best Buy Thursday but since I ordered it, the confirmation email just sat there. I coulda been blogging like there was no tomorrow if I would have known!!! lol Make hubby do a laptop and food run to the hospital for me. :-))

Anyway that's it for now, make a proper post later insha'Allah. Ma salaama ya'll!

Some food pics

A'salaamu alaikum ya'll. February 14th (Valentine's Day for those who celebrate it) is also the anniversary of my husband's arrival in the US as a UN refugee. Subhanallah. Their 10th anniversary as a matter of fact.

However when I decided to make kharoof (lamb) for my honey, it wasn't with either of those things in mind! lol He's only eaten lamb once or twice in the year we've been married; sisters, I try but I just can't eat it. Something about the taste, like wet, funky wool oil, I don't know, but I gag. :-( Since my kidney disease started, I've always been kinda weird with meat. Ah well...

Anyway last time hubby went to the halal butcher (we go to Boston to get the best quality) I encouraged him to buy lamb for himself, I would make it for him but fully intended to eat something else myself. So I made him these lovelies:

So I marinated the lamb chunks in a mix of oil, lemon juice, pepper and a 3 spice mix we grind of cumin, coriander, and fennel seed? Wow can't remember the last one in that mix... it's kinda a sweet spice used in Hungarian cooking alot, but not paprika. Sorry I'll update it if I can think of it. Anyway marinated it for 24 hours and then chopped large button mushrooms, cubanelle and thinner green chilis (medium heat), small round tomatoes, and little pearl onions.

I super under estimated the time to prepare the kabobs. Each tiny cute onion had to be peeled first, mushrooms carefully cleaned, chillis chopped and I also soaked my wooden skewers for 30 minutes prior to grilling so they wouldn't burn.

Didn't work, some of my skewers burnt through but alhamdulillah we could still pull them out. I love the aesthetics of mixing all components on one skewer but it makes no culinary sense. I put all the lamb on separate skewers, then put peppers and onions on the same and tomatoes and mushrooms on others. My goal was for a colorful skewer where all the components would cook at the same pace. I put the onions skewers on first; who wants a crunchy grilled onion? Then I placed the lamb about 5 minutes later and the tomatoes I put on the top "warmer" grill and put them on the bottom for the last 5 minutes.

It took about 20 minutes to cook, I had to turn frequently, I also had a huge flare up from lamb grease dripping down and catching other debris on fire. Wow, I tossed on a little water and a HUGE flame shot I. I knew it would but I had to save my kabobs and didn't have a sprayer with me.

Anyway it was pretty tasty. I ate some veggies and had salad; no meat passed my lips that night. I had also made a cake for that day; Abdulmajid had fasted and I wanted to make him a treat. I make a yellow cake mix but add 1/3 cup of lemon juice (more or less to taste) plus lemon zest. I forgot to reduce my water so the cake didn't rise as high and was really moist and really yummy!

I wanted to top it with a little something and decided on sweetened condensed milk with lemon juice mixed it. It was GREAT. Easy glaze for when you dont have powdered sugar for a traditional glaze.

Love my clay bakeware; perfectly seasoned and makes great cakes!

I usually take photos that are staged, you know out on a plate, etc but I just snapped this quickly. I was inspired by my dear sister HijabiMommy over at her blog My Life Under the Veil  She made a decadently delicious cake by Miss Paula Deen (say yum ya'll) but it was a little heavy for her so I just decided to make a yellow cake. :-)

Anyway enjoy insha'Allah and it seems I am already getting some of that predisone energy so I might be posting after all. Just depends on if I get in a manic mood and throw the computer at some stage LOL Just teasing, masha'Allah I am a pretty even person but wow, does prednisone make me a *bit* different!

ma salaama ya'll...

A transplant update

A'salaamu alaikum ya'll. It will be my 9 year transplant anniversary on March 6. However the past couple of weeks my creatnine has been steadily rising. I went in for a biopsy yesterday (NOT like a skin biopsy, this is invasive and it hurts!!!) and my nephrologist (kidney dr) called me this morning.

He said I am having a rejection episode but alhamdulillah a fairly mild one. There is also scarring present from this past year of infections. The more detailed pathology report will not be available until next week sometime for me to know if my original disease is back or not.

Besides my creatnine rising (which is a measure of kidney function) my hematocrit level has dropped. This measures your redblood cell portion of the blood which carries oxygen to all your body parts. So I am also becoming anemic which is just another proof of the rejection and harm my kidney is experiencing.

I'll be starting on a hugely high dose of prednisone to try and get this under control and insha'Allah reclaim some of my lost function. I hate prednisone. I get grouchy, emotional and I swell horribly. My face will look almost unrecognizable, my legs and feet will be so swollen it will hurt to stand. Insha'Allah it works.

I also have stomach issues so if these huge doses of prednisone hurt me too much I'll have to go to the hospital to get iv prednisone. I am afraid I will have to as just my tiny regular dose of that medicine causes me alot of pain.

Sisters, please make dua for me that Allah gives me shifa and helps me do everything in my power to take care of my kidney.

Jazakum Allahu khair... Oh and I might not post for a week or so; just hang tight and keep me in your duaat!!!!! Ma salaama...

Ramadhan journal: Day 10

A'salaamu alaikum ya'll. The pic above might give you an indication of where this post is going. :-) BTW I think it's super cute. lol

I went to the doctor today and had my kidney levels checked. My creatnine (a level checked to show kidney function) was elevated to 1.6 which in a healthy person would mean I was at stage 3 (of 5) chronic renal failure. For a transplant patient, it isn't so static a definition and we don't expect truly great things. :-) Just a chance at life, to be active, somewhat normal, maybe even live to see our children grow. INSHA'ALLAH!!!

Anyway I was told to cease and desist with the fasting. OK I can cope. But really I feel like a failure. I KNOW it's the qadr of Allah. I KNOW I am supposed to take care of my body. I KNOW it's a mercy from ALLAH and I should just be grateful... but I feel like a loser, a quitter, a big weinee poo poo head.

OK enough whining. Insha'allah I will still find benefit in this Ramadhan but really, I will miss that feeling of oneness with our ummah.

Ma salaama

Just say "alhamdulillah" and go on!

*Just for laughs. LOLOLOLOLOLOL*

A'salaamu alaikum ya'll. One guess where I am? Yep hospital time again. Same ole same ole, e. coli infection back, isn't it great to be me? Alhamduillah, alhamdulillah, AND alhamdulillah.

OK I think I had a great idea for a really moving post but it just left my mind. Like that. Started getting texts from family on FB and talking to my sister and away it went. So consider yourselves updated and make du'a for me please.

Here is a little funny story: during my TWENTY FOUR hour stay in the ER (most of it spent on a stretcher!!!) I got a little hungry and tired of being overlooked. :-) So after having not been given breakfast I decide to ask for some lunch around 11 am. By 1 pm I ask again and they say, Oh sorry all the trays have beef. OK fair enough, get me some chicken, I'll wait.

Then a really sweet little grandma looking assistant comes with a tray. It has a little dish of hummus, a dish of tabbouleh, and some triangles of pita. She says, with the best of intentions, "Isn't this what you people eat?" LOL I said, "Yes ma'am and thank you." Sooo funny. And nice that they have different cultural selections on the menu.

She was really pleased with herself that she had gotten me a good tray masha'Allah. I, in the meantime, felt like Ramadan at the masjid after all the chicken has been eaten and you are left with side dishes. :-)

OH I would encourage you all to check out the blogs I follow. Many of the sisters there are uplifting and really just interesting reads. A couple of non-Muslim blogs for crafts and family fun. Anyway if ya'll get some time, check them out and enjoy!

Ma salaama and keep me in your prayers insha'Allah.

Go to sleep, go to sleeeeeeep!

A'salaamu alaikum ya'll. A four hour nap does not a sleepy girl make. Now Aaminah is wiiiiide awake and it's almost 11 pm. I didn't realize she had slept so long and I left to run an errand. A didn't realize either but guess who is up with her? lol Of course Mama.

I am also considering going back to finish my degree. Maybe I am the person who has been in school the longest without completing anything; what a recognition. lol I originally started university directly after high school but wasn't able to complete the semester. I was already sick then but didn't know it and I just couldn't focus. I mean my grades were awesome, all As but come on, they were easy classes. I had no drive, no ambition and it really wasn't like me.

Fast forward about 5 years. Zack was 3 and I felt he was old enough for me to attempt again. I was working full-time at TN school for the deaf and went to school on weekends. I did Anatomy and Physiology I and II plus some other small classes. I had a 3.8 GPA masha'Allah all while working full-time and being a mommy and wife. Then I got pregnant with Alex and put it on hold again.

Returned when he was two and completed a year but my kidneys had failed by then and I was on dialysis. Just got too sick, had too many surgeries, same old story. :-)

Transplant was 2002 and that same year I decided to fast-track (due to divorce) and just go for my LPN and later work on my RN. However 6 months into the program, you guessed it, I ended up missing too many hours and had to drop out.

So now my health is somewhat stable (if you dont think of my multiple infections and hospitalizations this past year) and I realllllly want to finish my degree. If I ever go overseas for an extended period I could help our family insha'Allah.

Please make dua that Allah makes this easy on us amin and I am able to start AND finally finish. Amin amin amin! :-)

Ma salaama!

Busy, oh so busy

*Ain't she just the purtiest little thang you ever did see?*

A'salaamu alaikum ya'll! I've been meaning to do a post for while but you know, life gets in the way. :-) First I'll update everyone on my famiy, then get to the meat of the posting!

I finally had my i.v. pulled. Alhamdulillah! It was in for SIX WEEKS this time subhanallah. I pray the infection is gone but Allahu alim, time will tell. I have an appointment with a uro-gynecologist to have a little look-see (southernism!) at my hoo-haa (immature word for my "you know whats".) Wait, that's immature too! lol ANYWAY glad to be infection-free insha'allah. Uh, infection in my urinary tract for those of you thinking otherwise. :-)

I always like to keep up with the other sisters out there in the virtual world. Some make me smile, some make me think, others make me think, "what the..." lol. But I enjoy them all. I was reading on this Muslim Mama's blog the other day (she had a little rant) and really some of it was just too funny. Especially the part about personal hygiene. Sis, wanna hear my "dirty" secret? Once a friend and  I had a VH1's "Behind the Music" fest and did nothing but watch it the entire weekend. I mean we didn't change out of our pajamas, we didn't cook, and no, we didn't shower. Nice. Oh, and that has never been repeated again btw. :-)

I am still not feeling my new masjid. I know I could do more to feel a part. I think it's kinda like when your dog dies and you feel guilty petting the new puppy. I miss my old masjid and sisters there so much I can't feel too good at the new one. And, yeah, it's realllly different here. At least this Jumah I got 3 salaams. Woo-hoo! ;-) New record. In my previous masjid, which I still think of as MY masjid, I went out of my way to be involved, volunteer, work for the masjid and school, etc. Now I have no time for volunteering. I know and believe my place is in the home, that I should care for my husband, family, and home first. I firmly believe this but I do miss being involved in my local community. Insha'allah as the kids grow a bit (really meaning Aaminah!) I can do so again.

Ohhhhhhh I gotta share this with you all! My brother is currently a mandatory guest at one of the state of Tennessee's finer establishments. Um, prison, yeah. Not a violent crime but repeat offeneder. ANYWHO... I got a letter from him. Nice, telling me how he is working on his education, has gained 30 lbs (good for him, he is small), blah blah blah. Nice no talk about dropped soap and near misses. LOL Alhamdulillah.

However, before I could even read the letter, as I drew it out from the envelope, my eyes fell on his p.s. which was written on the back page. All it said was this:

"P.S. Is there any ladies who would like to correspond? Please have them write."

WTHeck? Are you serious? My brother, and let's forget even the fact I am Muslim and don't do anything like that nor do my friends, but my elder brother asking me to be his pimp. Authubillah! Toooooo funny and really just set the tone for me to read the rest of his letter. I didn't even mention it in my return reply; I'll put in a few pamphlets on Islam though and insha'allah he might read them.

OK this has been a crazy, all-over-the-place kinda post. I'll end it here now before my brain just goes completely out.

Ya'll have a great weekend! Ma salaama.....

Great news, masha'Allah tabarakallah!

A'salaamu alaikum ya'll. When last we spoke, I was a little down, missing my sons. Alhamdulillah the next day I received an email from my big sis which stated she was going to bring Zack and Alex up this summer when she comes to visit. I was on cloud 9! They were gonna come at the end of May which really thrilled me but because of scheduling conflicts (mainly for my busy boys) they can't come til August. Alhamdulillah just knowing they will be coming up is a huge relief to me.

Of course I want to go back home for a visit this summer but the kids here don't get out of school til almost the end of June. TN is HOT in July but of course that wouldn't stop me. I just have to try to figure out sleeping arrangements, etc. for our family of 6. :-) My husband isn't cheap with us masha'allah but I try to be frugal; the thought of renting hotels rooms for a week + is daunting. So I'll have to think and get creative. Hmm we could always go camping there; save a bundle. Not sure how the kids would feel about it tho. :-) I haven't been camping yet as a hijabi so I think that would be another special circumstance, trying to be modest and not destroy my abayaat with campfire cooking.

OK I just wanted to update you all. I am still doing my at home I.V. therapy. Insha'allah on May 14 they will pull my access tube and I will pray that Allah swt has removed this stubborn infection from me once and for all. Sisters, many of us don't appreciate what we have; I know as a younger woman I didn't think twice about being healthy; I took it for granted. Now of course I know to be more grateful to
Allah for his blessings so let's just say "alhamdulillah" and mean it!

Ma salaama...

"Mama sick...blechhh!"

These are little "multi-cultural baby" cupcakes my sister made for my babyshower for Aaminah. Yeah old picture but just wanted to share the cuteness!

A'salaamu alaikum ya'll. Unfortunately I have been ill enough during Aaminah's short life that she understands (as much as she can) what it means to be sick.

A was trying to explain my absence to her (when I was hospitalized in February) and he told her, Mama sick. So cute, she comes up with, "mama sick...blech!" Complete with open mouth and bending forward. Masha'Allah.. she makes us laugh every time with that.

Alhamdulillah I was in the hospital again but just for a day this time. I was released today and got home in time to relieve A (he had Aaminah all day and then trying to keep up with 4 kids after the bigger ones returned home!) I have the same resistant infection I have been battling since October.

Sisters, please make dua for me. We are trying to find out why I keep getting this infection. This time it's just a UTI but a couple of times it's been full-blown pyleonephritis (a true-blue kidney infection). AND in my transplant kidney no less!

Alhamdulillah, all things happen for a reason. Please make du'a that Allah heals me and keeps me at home with my family where I am needed.

Ma salaama...