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!

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!

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

Gratitude, it isn't just a word

A'salaamu alaikum ya'll. So I like to think of myself as a grateful slave. I noticed I sure say it often enough. Guess in case no one is really paying attention. "Yes my life is hard, I work xx hours a week, I'm a single mom, BUT look how grateful I am???" Cue picture of me smiling, baking cookies with Aaminah.

OK so to cut me just a bit of slack I seriously try to cultivate a grateful attitude but I realized tonight how seriously lacking I truly was.

Aaminah vomited. Not really sick just an upset stomach. Normally, as a seasoned mother of 3, it ain't gonna phase me. A little puke, a lotta puke, whatev right? Well let's factor in my xx hour work week ;-) and the fact I don't have a washer and dryer in my apartment (making a late night laundry load impossible) and it becomes a big deal quick.

So I'm feeling a bit stressed and a lot crapped upon. Yes I'm gonna admit it. Today would have been the one day I had free to actually get to a laundro-mat to do the wash and now it's bedtime and little mama is exhausted. So what do I do??

Make dua? Call a friend and ask for help?

Nope. I facebook!

:-(

I post: "Aaminah vomited all over our bed. Worst part? No time til next Sunday to get to laundromat as I haven't gotten a washer and dryer yet. Alhamdulillah. (Praise God in all things.)

Yes look I me! I tacked on that "alhamdulillah" lest someone think I am ungrateful. I even translate it so my non-Muslim friends can get in on the action and admire how, even in the face of puked-on, stinky laundry, I can still praise ALLAH in all things.

So I roll up the offending pile of covers and re-make our futon (still waiting on those movers!) and settle down. Can't sleep yet, make dua???

Nope, check facebook.

And wow. Honestly I am crying right now. I had 6 people offer to wash them for me. All my bestest of best friends, my closest family members right???

Wrong. How about my middle school (daaaaang UofA, how long ago was THAT??? 27 yrs ya'll) English teacher and a friend from my school days, a sister I know at the masjid but am not tight friends with and a few others.

Wow, it was such a humbling thing. So I post something about how can I complain about ANYTHING when I have so many who would drive so far (an hour!) to pick up my dirty laundry, wash it, and return it???

My dearest sisters, Allah is truly merciful. We sit here and we feel alone and we struggle and we do our best and we fail. Yes we fail, not just in these earthly endeavors but we fail in our responsibilities to our Creator and what do we get in return?

Blessings past counting. That's what I get and it awes and amazes and humbles me. I cannot fathom the love Allah, the Creator of the WORLDS, the Merciful, the All-Powerful, has for me, His most imperfect of creations, that I should be so blessed in so many ways.

My lesson learned tonight was true gratitude and how to fully experience a humbleness of spirit that uplifted me. 

So let's all say "alhamdulillah!" and mean it. 

Ma salaama ya'll. :-)