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!

Well, howdy-ho!

 

Salaam ya'll! I know, I know, it's been a RIDICULOUS amount of time since I last updated but sometimes, there just isn't much to say. Or there is a LOT to say but someone's husband doesn't like her to say these things. :) Either way, here I am now so let's just get down to business, shall we?

I would like to introduce a new theme for my blog and that's basically, just a bunch of random thoughts that I'm pretty sure most of you won't be interested in but I like writing so there's that. I like keeping track of Lil Miss's hilarious stories and let me tell you, she does not disappoint in that department! I did get pretty bummed when I lost ALL of my photos on my blog. :( I was going to delete a few that Cap'n objected to but I did not want allll of my pics gone. Boo hoo hoo. But they are so I decided all I can do now is forge ahead, dear readers. :)

So where to start? OK so my health... as you know I was on dialysis last year after my Hospital Episode of 2 weeks! I had probably 10 surgeries and truth be told, I was very ill. Alhamdulillah. Anyway I eventually decided enough was enough and asked my medical team to just stop and give me a couple of weeks. Turns out my kidney, hereafter always to be known as "little buddy", while indeed failing, still provides just enough funciton for me to eek out an existence. Yay! ;) So I am at about 10% kidney function which is, dear readers, dialysis level and I have officially joined the "End Stage Renal FAILURE" club but I am not doing treatment. I feel better and stronger than I did on dialysis so it's a win/win as far as I'm concerned.

Disclaimer: I'm still super sick. I get tired verrrry easily. My house doesn't get messed up and cleaned in the same day. We don't always have the home made 5 dish meals I like to cook. I'm at peace with that. :) I am able to be Ummi to Aami and function at a reasonable (for me) level and for that I'm... all together now... grateful. :D

Immigration update: Cap'n is STILL in the midst of the Carribean. However.... USCIS did approve our petition so yay!!!!! We are simply waiting on a visa interview which should be easy peasy lemon squeezy, done and dusted as the Brits say. I'm so relieved and just reallllly ready to be a family in toto again. :)

What else is there to say? Oh yes Aaminah has a kitty. Bless our heart, it's the third one. Maximus the Catticus should have been named Sh*tty kitty bec he was just mean! So he went back to his original family. Then a few months ago we tried an older girl, maybe 2 years old. However, she did NOT like little children a fact the people who gave her to me said might happen. We took her for a trial and it didn't work out so yep, you guessed it, back she went.

Now we have a new little kitty, 8 weeks old, Aaminah named her "Mimzy". She's cute and cuddly and on my lap as we speak. Aaminah is the Queen of Kitty Land and is in heaven! She is mostly verrrry kind and gentle with her but after a day of school she tends to get a little wild. Working on that with her.

What, you say, Aaminah has grown in the time since I last blogged and is now in school? Yes, she is! My baby done growed up. ;) She started KG this year in our local private Islamic school and let me tell you she looks adorable in her uniform! I could just squeeze her cheeks and kiss her cute little face, which I do quite often. :)

So if any of you took advantage of the fb add button on the side, you already knew all of this stuff. Pretty sure a lot of my fb friends will be happy I've started blogging again; it should cut down on the number of posts I generate on their newsfeeds. Oh well, as I told them once, if they are really my friend they will want to know and if they aren't they shouldn't be on my page. :)

OK so I guess I'll leave something to say the next time. Until then, please keep us in your du'a and I'll say a prayer for you also. Ma salaama!

Being a woman and being sick

A'salaamu alaikum ya'll. Wanting to get something off my chest, metaphorically speaking. Actually, it could be literal as well, because I would loooove to get these tubes OUTTA my chest. :-) But I digress. As usual.

It's hard being a woman and dealing with the side-effects of illness in so many ways. As a  mama, as a homemaker, it's hard to have to admit we can't do things that need to be done. I'm not ashamed to tell you my shower hasn't been cleaned since I've been ill. I simply can't do it and I have no plans to lick it anytime soon. :-) So no matter how distressed it really makes me deep inside, I know cosmically speaking, it's a thing I just have to let go. I don't have the energy and with the swelling and the placement of the tubes, bending over is difficult at best, and painful at all times. So shower-cleaning has fallen by the wayside.

It's difficult to be unable to be the active, supportive sister I've always tried to be. My best friend, Um Bilal, just had hernia repair surgery yesterday. I want to cook for her and help her in so many ways but alhamdulillah I'm really limited right now. So I've set up for other sisters to cook and masha'Allah she has a wondeful husband who is able to stay home with her and the baby. But still... feel like I'm just not doing what I should for her. Thanks to her and Abu Bilal, anything I've needed since I've fallen ill has been taken care of. Garbage taken out, clothes hung up, driven to the hospital... anything and everything masha'Allah. Abu B is Cap'n's best friend of over 15 years and Um B is mine for the past 6. We are blessed with them.

It's also difficult for me from a purely feminine standpoint. Steroids are difficult meds. They do a great service (keeping my kidney from rejecting... or at least anymore!) but the side effects are harsh. I've broken out in bumps which I've never had before (except post-transplant when I was also on high doses) and it makes you gain weight/retain fluid and fat in odd places. Namely face/neck/trunk. Also the back of the neck like a buffalo hump? Yeah, Attractive. So I'm not only dealing with feeling pretty bad on some days but also dealing with these other side effects. I'm engaged, Cap'n and I have never met in person and now it's looking like when we do meet I'm going to have these unattractive side effects.

I know he respects me as a Muslimah, as a woman, as a friend and fiancee. I know he loves me for my character and he also is attracted to me. But now? Of course he will not change how he feels for me but I've changed. I feel self-conscious. I feel ugly. :-( I want to feel confident and happy when we meet not worried he will be unhappy with me. Of course he hasn't seen me sans hijab and believe me, hijab is a fat girl's friend. Now I don't mean normally but with this extra swelling... it reminds me of a bullfrog's neck. It's gross and it's ugly and i.hate.it.

OK so that's my whine for the day. Oh wait, one more thing. Also the steroids make you ravenous. So my appetite has increased dramatically. I've gained about 12 to 15 pounds, a lot of which is fluid retention but some is pure fat. Prednisone causes you to store carbohydrates quicker than you normally would; it can also cause (insha'Allah temporary) diabetes which I now have since my massive doses in the hospital. I am insulin-dependent but it is getting better and if I'm careful how I eat, I don't have very bad problems with it.

So I've had a lot of changes in a short time. I've been put back to only 2 days a week dialysis because my kidney does have some residual function. I'm so happy for that; it's like getting a free day a week. :-) I'm also grateful I am able to dialyze; in Cap'n's country, for example, no one over 40 or diabetic is subsidized by the government. Ouch. Subhanallah. It's a poor country so that means a great number of the population with kidney disease simply has to... die. So there are still so many things to be grateful for, to be happy about.

One of those is the fact that Alex, my "baby", called last night. I haven't heard much from my sons recently. I text and call them but masha'Allah they are busy young men. I try to be patient for them. So he calls to tell me he has a band concert. He's first chair masha'Allah, he plays the bass which is a large brass horn. He was so handsome and sat so straight. He shook the other players hands (since he had beat them out! lol). It was just wonderful to see him so competent and confident. Aaminah was ecstatic too!

Then Zack called and he needed a ride back to his dorm room. He doesn't normally keep his car on campus. So we got to have a ride and visit with him as well. Since I just recently got a washer and dryer (yay!) I'm hoping Zack will come here to do his laundry. The campus is about 5 minutes from my apartment so hoping we'll hear from him soon. Sisters, as your children grow up, they grow away. It's natural in many ways but difficult in all. Of course the fact that Alex doesn't live with me makes it harder. He is always welcome here but he is so busy with school, running, band, drama club (please not girls!!!!) that he just doesn't have a lot of time. I take what they have left over and I'm happy for it. :-)

I wasn't able to get a picture of him last night cause we were so far away up in the balcony where Little Miss wanted to sit. I'll try to get some new pics of them soon; my boys are so handsome masha'Allah! Actually here are some pics from their mission trip to Guatemala last year. I appreciate the work their church does. They do not go and tell starving people "Jesus saves!" they go out and get their hands dirty. My boys helped build walls and plant gardens. They did it in the spirit of their beliefs but without the heavy-handed conversion tactics I find so distasteful. Plus, the majority of Guatemalans are Christian anyway. So it was truly a labor of love. :-) Enjoy!

Zack (l) and Alex (r) bending re-bar. :-)

Zack then Alex on the far end. :-)

Breaking rocks into smaller rocks. This is so the craftsmen can build walls. :-) Alex is in the front.

Zack translating. He is very gifted in Spanish; it's actually his minor in college. His mad skillz were a god-send. :-)

Ma salaama ya'll!

Chip-in site started by a friend

Salaam ya'll. A very sweet sister from my previous masjid community started a donation site for me. Jazaki Allahu khair sister. I hesitated to list it on here but, if anyone feels they should give a bit, barak Allahu feek. If you do not feel so inspired, barak Allahu feek. :-) Is all good. Should you want to give, please see the "Chip-In" widget to the right.

Ma salaama...

2 silly girls :-)

Salaam ya'll! I'm currently watching 2 very cute n rambunctious little girls jumping all over my living room. My friend Angel's little girl, Jayanah, stopped by to play. I was there when she was first born subhanallah. It was an unbelievable experience. Her then:

I was in the delivery room when she was born subhanallah. I said the kalima in her ear. Yes, I now it's supposed to be the athan and the iqama but I did what I felt was right and I am not her father. :-)

The crazy girls now:

WHERE did Aaminah learn to pose like that? I mean, I said let's take a  pic and she drops her arm around Jayanah and cheeses it, masha'Allah! :-)

Cute yes? Yes. :-) Here are a few more pics for your viewing pleasure:

Our new obsession: the memory-foam filled "bean" bags. This is a pic of the huge one, has 2 queen size mattresses inside it.

I've had these decorative orbs for a couple of years but had them in an antique wooden bread bowl. Picked this glass bowl up at Goodwill intending to fill it with colored glass rocks, water, and an aquatic plant. I think these look good here though.

Photo bomb! Was trying to snap pic of my new mini-orchi and Aaminah kept timing her entrance right as the shutter snapped! It was so funny, I was laughing so hard I couldn't even reprimand her. :-)

As for my health alhamdulillah I've been put on dialysis only twice a week. I'm sooo happy! My kidney has enough residual function that I can only dialyze 2 days instead of 3. Bad news, my access isn't working so sometime this week I'll be back in the hospital but hopefully only for a day. We'll see insha'Allah.

As for my impending nuptials... sigh. Trying to get our fiance visa paperwork filed and hope they accept our reasons for NOT meeting face to face within 2 years of filing. I mean, the US will not grant him a visitor's visa and I cannot travel overseas now. Dialysis in Jamaica costs $300 per treatment. I just can't afford it alhamdulillah. I had just repaired my car (to the tune of $600) and now another thing is broken. The radiator/coolant system is messed up. No car. Sisters, when it rains it pours. I know Allah tests those He loves but sometimes it is hard. I am waiting on my disability determination; usually once you are on dialysis it's very simple to get approved. I need it desperately sisters so please make du'a for me.

Oh funny story masha'Allah. Aaminah and I were at the grocery store and I gave her a big kiss. She giggled then looked around and said, "Is it ok for us to kiss here?" LOL MashaAllah my modest lil muslimah. I assured her it was fine. :-)

So Aaminah tells me she looks like Cap'n. Masha'Allah. She does resemble him more as they both have brown skin tones, brown eyes and a slight tilt to them masha'Allah. I agreed that yes she looks like him and she says frequently that when he comes he will be her Daddy. Sisters, I hope most of you do not know the pain that comes from not having a father in your life. Aaminah is starting to feel different from her friends. I explained today how Allah gives us all a mother and a father but sometimes we get a gift, another person who just loves us so much that they CHOOSE to be in your life and they CHOOSE to love you.

She said, "Yes like (Cap'n). He wants to come here to me and my Abi wanted to go away." I never speak ill of Abu Aaminah but yes, that is exactly it. My daughter masha'Allah is so smart and understanding. I agreed with her that yes Cap'n loves her very much because his desire is to be with us, to be her Daddy, to take care of her. I didn't have to say anything about Abu A as, at the age of 3.5, she understands perfectly.

Well the girls need me, I better go. Just another quickie uninspired update. :) Ma salaama ya'll!

Sick mama

A'salaamu alaikum ya'll. I'm gonna tell ya'll a bit about being a sick mama. Eh, just one of those days.

Being ill takes on a new dimension at bath time. Previously, this was a joyous occasion, the culmination of a day hard-played and hard-lived, as evidenced by the sticky little hands and grubby face. Now it’s a time for planning, and conserving, and scheming. Should we bathe before we go out to play? She needs it but then afterwards it’s a sure bet and well, doing it twice in one day just isn’t doable now. It’s little things like this that make being a sick mama so hard.

Eating. Wow, that’s another one. She likes to eat masha’Allah. She has a healthy appetite for healthy food. I am very blessed and grateful for that but planning, shopping, cooking, cleaning… it’s all like a marathon for me. I can do one at a time but add another level and it all goes pear-shaped. So one day we do the shopping. I’ve only been twice I think since I was “released” J and it wears me out. Come home and well, the groceries must be put away, at least the perishables. The other things, the crackers and bottled goods, those can patiently wait their turn on the kitchen floor, beside the magnet that dropped off the fridge yesterday and the timid little dust bunny hiding under the cabinet’s edge.

Next day, if it’s not a treatment day, it’s all gold. Well, in my new world, within my newly defined capabilities that is. I can do some things. Today for example… oh watch out world, I’ve been unleashed! I made scrambled eggs and toasted a bagel for Little Miss. I vacuumed after instructing her in the fine art of small object removal from the carpet. I eventually made my way into the hallway and re-arranged the closet to better house our shoes.

Now, don’t let this fool you, it exhausted me. I would prefer to pretend, with all my super-human powers, that it was nothing, a lark if you will. But it wasn’t. It made me tired deep inside. I now understand the term “bone-tired”.  

What’s worse, in my estimation, is that now Aaminah understands it too. She knows all about my “treatment” (wow, that sounds like a euphemism for mental illness or an STD!) and what function our kidneys should play in keeping us healthy. I love that she is so smart and inquisitive masha’Allah but I hate the reasons for it. She knows I’m tired, she can’t hug me on my right side for fear of hurting my vascular access, we can’t play on dialysis days, she can’t she can’t she can’t…. it’s a litany that’s impossible to escape, at least for the time being.

Please do not take this as a great big complaint. Rather, it’s for me to step back, assess my situation, say wow, yeah, you’re doing pretty great if you brush your teeth today! Or alternatively, laugh at myself and say, “Get over it!”. Again, as I’ve said before, it’s my blog and I’ll whinge if I wanna.

Being a sick mama means confronting reality. It means accepting our own limitations but even more difficult, accepting them in light of our responsibilities to our children. I am very limited alhamdulillah in what I can do now. I can accept it (somewhat) for myself but when it comes to what Aaminah or my boys want or need, and I know I cannot fulfill it, wow, that’s infinitely harder. I have to drag myself to the toilet to make instinja for her. Her room is still not re-arranged from having gotten our belongings post-move as I was working 7 days a week and then went straight to being deathly ill. Kinda put a kink in my plans, ya know.

Anyway, being sick is hard and being a sick mama is much much harder. May Allah swt grant my children patience and put love and caring in their hearts for me and also please give them forgiveness to overlook my shortcomings and failings, amin.

Ma salaama ya’ll…

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!

Home!

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!

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. :-))