March 24, 2012

Quickie update

A'salaamu alaikum ya'll. So I was readmitted to the hospital from Monday through Wednesday. Had my "day" surgery and was supposed to dialyze. Turns out was too late by Monday and they can only dialyze as an inpatient. So I had to stay til Tuesday. Tuesday came and I'm informed 2 treatments are the minimum before they will release. Grrrrr... I am so over being in the hospital. I have a LIFE ya'll. :-) Kinda need to get back to it.

Anyway, I was a compliant patient and I stayed. Aaminah was fine, with my friend Deanna again and everything was ok. My treatments went well and I'm not the "proud" owner of an ash split catheter. It's placed kinda under my collar bone. I cannot shower with it (yay :-( ) but I have to put up with the inconvenience for now. If I have to stay on dialysis I'll end up getting another permanent access but that's for another day.

So I'm home, starting treatments tomorrow. I'll be a Tues, Thurs, Sat girl. It takes about 5 hours from hook up to disconnect and "chill" time. :-) Insha'allah it will all work out. Of course I cannot travel to Cap'n for the foreseable future which is a bit hard to bear but we are trying to be patient and upbeat. Alhamdulillah.

OK so I need to get to bed. It's really late and I have to be up on time to get ready for treatment, take Aaminah to friend's, and well get there. I've never been to this location so I have to scope it out tomorrow also.

Alright gonna go set my alarm, talk to ya'll later. Ma salaama!

March 17, 2012


Vignettes from home: This is an antique rocker picked up from a flea market for $20. It had belonged to the person's grandmother and is from the 1930's. It's called a baby rocker because it doesn't have arms that you could hit your wee one's head on. :-) I love this. Notice how small it is; it reminds me of my tiny little Mamaw. Made to fit the someone about 5' tall. Perfect for me too! :-)

A'salaamu alaikum ya'll. UofA is home!!!!! So happy alhamdulillah but exceedingly weak and tired. Masha'Allah I have sisters cooking for me for a couple of weeks, honestly I am just so blessed. I did get up this morning, make a very simple breakfast of which I was inordinately proud (mostly that I was able to stand up long enough!) and even washed out my plate after. I feel like a rock star! lol

Took all my meds, figured out my blood glucose monitor (daaang they are persnickety!) and just trying to adjust to being really ill again. Wow. It's hard. OK so for probably a month or so I was dragging my body around at about 20% kidney function but I was making it. Work, Aaminah, somewhat keeping up my home, I did it. Now, however, because of the severe immunu-suppression (to try and stop this rejection), the high doses of meds and even the treatment itself, I am wiped out. Typing now is an extreme effort subhanallah.

It's amazing the little things we take for granted. I laughingly told my best friend Sr. Lisa that I needed a table in the toilet to prop up against. Pathetic. :-) My kidney function is just 14% right now. That's just a few hairs above... well not being above ground anymore. So it's understandable my body cannot function. However, I don't really wanna accept it. It's hard to think I can't even rearrange my closet or organize Aaminah's room. I mean alhamdulillah I am home now, I have time to do those little (and big!) projects work forced me to put off but now, my body won't cooperate. Trying to stay unperturbed but dangit, I don't like it.

For a few weeks I won't be leaving my home. My immune system is too low, my resistance just isn't up. I also can't walk for more than a few yards without needing to sit :) so I guess that's all good. I have great friends and family who are helping me.

Aaminah?? I haven't seen her yet. :-(  She possibly has a cold and until she is better I can't be around my baby. My heart is aching and I am on the verge of tears (ok maybe a little past "the verge") because I just miss her so much. And she misses me. Insha'Allah it's allergies and if she isn't feverish I think I'll just have them bring her anyway. I am a little worried how to care for her now, until my strength returns, but masha'Allah she is almost 4 and very intelligent. She knows I am sick (miskeena!) and is a good girl so I am sure we can make it. Baths will be tough but again, it's all doable and it's nice to have a return to constant dua. I know Allah loves when we beseech Him and sometimes, when our life seems to be going so peachy, we forget. So there is a very good lesson (well many lessons!) in this that insha'Allah I am taking to heart.

Wow, my neighbors are loud. LOUD. Never realized it cause never home on weekends. LOL. Insha'Allah my mother is bringing a stereo and I can play nasheed, Qur'an and children's songs for Aaminah and not be bothered. Allahu rabbi! :-)

So my health. Right. I have to return to the hospital on Monday insha'Allah for a small surgery to implant a temporary catheter for dialysis. I have mixed feelings. I know my body needs it, desperately. My blood needs cleaned, toxins flushed out. My complexion is sooo sallow right now. Think grey-ish yellow. Eww. I know I will feel better but it's hard on your body at the same time. I am grateful I live in a country where my government will spend literally millions to keep me alive. Subhanallah. My transplant itself was $250,000. My dialysis treatments in the past were $2000 or so a month. I've been hospitalized more times than I can count. Medicines and treatments and hospital stays, oh my! :-)

So day surgery on Monday for a temporary cath. Temporary dialysis (i'A!!!) and there is still hope my kidney might pick up function again. I'm still very immuno-suppressed so giving my kidney a break from the relentless attack it's under. Sisters, this is all my fault. In January my kidney was ok. Doing fine. I started work and stopped taking care of myself. I missed doses of my medication, something I rarely did before. I wasn't drinking enough or eating well, I had gained more weight (worked hard but sat a lot doing it) and didn't do my routine labs in February because I was "busy". Alhamdulillah.

So my new goal is to take care of myself so I can take care of others. I have to be a priority again. Of course I am no longer working. Probably said that in another post. My doctors said it would be a couple of months before and if I could reconsider. Have to recover, see what's on the horizon for me treatment wise.

Cap'n? Didn't get his visa, not sure if I said. Alhamdulillah. There are some tests from Allah that are more difficult than others. Being sick AND being unable to be with him, that is a hard one. One or the other but both... subhanallah. Alhamdulillah we are Muslim and we accept the qadr of Allah but we all know it's difficult at times. We are going to go ahead and apply for a fiance visa even though we haven't met in person. They won't let him come here and I am too ill to travel so insha'Allah they grant an exception. Dua, please.

OK so that's my update. Now that I'm home ya'll will be hearing a lot more from me. It was all a time-issue. :-) Now I got loads of it. When my friend Sr. Deanna told Aaminah I wasn't going to work anymore, she actually did a little dance. Masha'Allah, how it feels to be loved like that! I have to figure out what to do with her when I have my treatments but that will work out also i'A.

Thanks for stopping by, please do not forget me and my family in your dua, and i'A see ya'll later. Ma salaama!

March 16, 2012

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' 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. :-))

March 15, 2012

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.

March 14, 2012

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!

March 11, 2012

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....

March 10, 2012

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. :-)

March 8, 2012

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!

March 7, 2012

A turn for the worse but still smiling...

A'salaamu alaikum ya'll. Subhanallah what can happen in a few days time! I came into the ER with a suspected infection in my arm. Feeling normal (which for me is less than great anyway) but they decided to check my kidney function.

Rejection. Suspected rejection. So it started (this was Sunday night) Admitted to the hospital, next day had another biopsy on my poor little kidney. Given fluids. Didn't get result until Tuesday and it showed definite rejection on both a cellular and antibody level. Cellular is a chronic type and antibodies is what we think of as acute rejection. Apparently a roaring case of it. Alhamdulillah.

Treatment: Its a double apprach. Massive doses of steroids to calm the cellular rejection and then plasmapharesis to insha'Allah clear up this acute rejection. I have antibodies attacking my transplant. Dang it, attack other things, not my kidney! So plasmapharesis is close to dialsys. I had to have a large vein access placed, in my groin (joint of thigh and body). 2 foot long in-dwelling cathether to be used for 5 days. No showers, no baths. Joy.

Yesterday I had the immunoglobulin treatment. They had to give me about 5 hours worth of IG antibodies. They are gonna go in my body and irritate the antibodies that are attacking my kidney and cause them to swell. Then they will take my blood out via one port and then spin out my plasma, causing the swollen antibodies to be removed, then replace my plasma and my blood. Basically like dialysis, similar procedure, will take 3-5 hours to do. I'll do 1 IG treatment, then next day plasmapharesis until I've completed at least 3 cycles. Then I'll have a repeat biopsy. Yay. Feels so good (not!).

My biggest problem is access. All of my veins are very surface, very wiggly, and very uncooperative. I was stuck 10 times to try and get the larger-sized immunoglobulin access in. It is failing so I shall have to have a semi-permanent one placed in my neck or should. Oh the joy. My veins are just destroyed, so fragile, from years of prednisone useage which I must take to preserve my kidney. You always have to pay the piper, sisters. :-) So anyway my arms, after 9 unsuccessful attempts (awesome nurses, just bad veins) I am a mass of bruises up and down my forearms. Alhamdulillah. After hardship comes ease and I'm definitely banking on that some day. :-) Insha'Allah!

We are right now concerned with stopping my rejection and loss of function. I pray that it works, that Allah grants me shifa, and helps me take better care of my kidney. We all take things for granted, sisters, whether its family, friends, or (relatively speaking) good health. I have been working waaaaay too hard and not able to take very good care of myself. Once again to anyone who felt I was trying to take the easy way out and look for a husband to care for me: I need cared for. I'm not healthy and I can't keep up this pace. Alhamdulillah if ya'll can, I can't and my body is screaming this at me. It's my right to have a husband to care for me and I need it, khalas.

So I've included some pics of allll the beautiful flowers from friends and family. Masha'Allah sisters, I am so loved. I've had a dear blogger friend offer to donate a kidney if needed (jazaki Allahu khair!) and just so much dua being made for me. It's humbling and beautiful and if I didn't feel so bad right now, I'd be smiling.

I am a bit of a stoic and I don't want my family worried, I don't want Cap'n worried as he is so far away and can do nothing. So I grin and bear it. Which is my normal mode anyway, even before Islam, and now of course I have the promise from Allah swt that he will not put more on ME than I can bear and I know this is true. I also know He will expiate my sins for all of the hardship and pain insha'Allah and I am so happy for that as well. But... it's hard to be sick, hard to be away from my daughter, my home, my job, my life. I try to be a gracious patient but it's a trial sometimes.

Especially on the high doses of prednisone which I discussed LAST February when I had my rejection episode. Unfortunately this one is much more severe. Oh yesterday was also my 10 year transplant-iversary yay me! However, I was back in the same hospital. Boo!

I have vowed to try and take better care of myself. Hydrate more (water water water!) be uber-compliant with my meds, work a bit less if possible, and exercise/lose some weight. All of these things are not impossible just take dedication. I don't want my kidney to fail, I don't want to be back here again. I want to live strong and healthy (for me! lol) i'A and I want to build my new life. Please keep me in your dua and also please make dua that Cap'n is allowed to come here soon. I need him with me, living alone and having to do it all is just past my endurance.

Enjoy the pics! :-)
Beautiful orchid from my sis. It's alive and can take it home to kill it! lol

Aww little mommy brought me some flowers and a balloon. This is her "I'm so sweet and love you" face. LOL

All the flowers, cards and candy I've received. Oops one box is out of the pic!

Kindle e-reader and laptop. Yay!

Table with diet coke and breathing machine. Double yay!

My co-worker Beth and her husband brought those for me. Very spring-like.

Tulips from my mom. Beautiful.

Rose from a sweet sister in MA. She also sent a box o' chocolates. Yum.

Other view of the stunning orchid. I always think of Sr. Ria when I see an orchid. She grows beautiful ones!

March 2, 2012

Where have I been???

Salaaaaaam ya'll! I've been busy. Working my 7 days a week, 10 hours a day. Exhausted, writing is the LAST thing on my mind. However, word is easing up, I'm getting one day off a week and only 9 hours a day. So happy alhamdulillah!

So much has happened, where to start? Still unmarried, all things come in their season, dear readers. :-) I did FINALLY get my belongings from the movers. Alhamdulillah! I had to pay another $960 but was just so happy and grateful I had a job so I was able to pay it on my own and not have to ask for help from anyone. That is a blessing in itself! So now instead of a bare apartment we have boxes and bags and containers, oh my! :-) Be careful what you wish for, huh? I would say I just want the time to put things aright and rearrange, decorate but I need my job and it will be over after the end of April so I am sure the mess will wait for me.

And wait. And wait. :-))

Anyway so that was some good news. Aaminah is growing like a WEED. Yes indeed. Most of her 4T clothes she has outgrown masha'Allah. Time for the charity bags. :-) She also has heaps of baby toys for toddlers so we'll go through everything as time permits and really pare down. I enjoy this type of thing and am looking forward to it.

So my job. Wow. I enjoy it, I really like my co-workers and the owner. The job is good too but some of our clients... words just do NOT describe. I have been propositioned and stared at and really it's rattled me a few times. I am not a shy person but alhamdulillah Allah swt gave me haya and now it's difficult for me to interact non-mahrems ESP if for some ridiculous reason they try to flirt with me. I'm like, I'm the one covered in the office and yet, you think you should try your luck with me??? LOL

I have ordered some natural henna products online and as soon as I use them and can really give a good rating I'll do a post. Promise. :-) I wanted a color other than orange-brown henna for my nails and they make all-natural nail, lip and areola stains. Yes sisters you read that last part right as well. :-) It's all-pupose. I'm excited and I'll let ya'll know in a week or so ok?

Oh I did buy a couple of uber-cute sandals recently online, thought I would share. Yes this is a random, mashed-up post. I've had thoughts for some serious ones but no time to do them justice so hope ya'll like this little slice-of-life entry. :-)

So it has kinda sequed into a "here's a few pics for ya" kinda post. I feel like I owe you guys something for being so patient while my life is straightening back out.

Ohhh and speaking of straightening, I got an awesome keratin hair treatment today. I don't splurge on myself but this was $155 with the cut. Ouch! But... it was long over-due and yeah, I feel like I deserve it. My hair was in serious need of some deep-conditioning. This treatment straightens it and conditions it. Now instead of my half-curly, half-wavy, alllll frizzy mess I've got lovely flowing locks. Wish I could show ya'll but well.... you know. :-) Take my word for it, if you can afford to treat yourself and your hair is giving you fits, this is definitely worth it.

Well I have been more appearance-concious lately. Getting remarried and yes, getting in touch with my more feminine roots again. I was just sooo busy in MA and then when I arrived here in Sept I was broke, broke, broke. So I've bought some new clothes, got my hair done and (gettin') my nails did :-), and the cute sandals kinda topping it off.

I have also, on the advice of my doctor, went to the tanning bed a few times.  As a hijabi, my Vitamin D levels are always pretty low but factor in my kidney disease and they get super low. So I decided to pop into the tanning bed a few times. I like having a bit of color to my skin and Vitamin D is called the happy vitamin cause it gives you more energy and improves your mood. Insha'allah. :-)

Alright I think I'll sign out now. Just want ya'll to know I'm happy, Aaminah is healthy, and we are doing alright. :-) ALL praises be to Allah, the Lord of the worlds. :-) Also my boys are doing great, awesome grades, Zack has a part-time job and is in his second semester of university and Alex has a play this weekend where he portrays a knight. Gonna see my budding thespian on Sunday insha'Allah. Love my children, love my family, love my friends, love my life.

Ma salaama ya'll!

These are surprisingly comfortable and reallllly cute. :-) Oh and I got this pair too:

Aaminah painted this for me. Beautiful yes?? :-)

Aaminah at the super-creepy playplace at the BK in my neighborhood. Low lights + funky smell = ewwwwww