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The Staff at SPUH

There is absolutely no worse feeling than your baby being unwell and you can’t take away their pain. For the past seven days we have either been at the pediatrician, at the hospital, or both. These past seven days have been exhausting, physically and emotionally. 

When Arham woke up ill Friday, and wouldn’t improve as the day went on, plus a doctor’s visit later… I knew I had to take him to the ER. I thought I was going in just so he would feel better with some IV fluids.

Little did I know what that night would have in store for us. Or even the next few days that followed for that matter.

To be quite honest, I was dreading taking him to the hospital remembering how painful it was (physically) for Arham when he was six weeks old and hospitalized and how painful it was (emotionally) for me. It’s traumatic and something I  can’t get it out of my mind.

Which brings me to what led me to start writing today:

The staff at Saint Peter’s University Hospital? Godsend. Especially the nurses.

The level of care [and comfort] they provided for not just my precious Arham, but my parents and I during the stay? It’s unforgettable. It’s something I’ll never forget and I can’t begin to express how grateful I am.

From explaining what I didn’t understand multiple times, to giving me time to process the information.

From being available for questions to continuously asking if I (or we) needed anything.

From listening to and addressing my concerns to allowing my parents to stay and be in the room with me when not typically allowed.

From using a flashlight instead of turning the lights on in the middle of the night to prevent disturbing my finally sleeping 15 month old to coming in later to try again to not disturb my child.

From understanding my fears and hesitation to providing any sort of help they could.

From calming my fears to reminding me prayers can change everything.

The list is endless, just as my appreciation towards them is.

It is an innate reaction to complain and not forget when things don’t go wrong, but we need to express appreciation when things go right just the same.

On a side note: I, myself, ended up in the ER one night while Arham was hospitalized — and they were so accommodating. A typical ER visit is hours long. They had me out within three hours so I could go back up to the pediatric ward to be with Arham and each of Arham’s nurses were just as concerned about me as they were of Arham.

Being completely honest, even though I always like to be safe rather than sorry, I wasn’t sure why they were putting my baby through excessive tests that wouldn’t help or weren’t even needed on that Friday.

He just had a terrible stomach virus I thought

THIS is why I was hesitating bringing my baby I thought.

It may very well have saved his life.

Let me tell you, it’s not comforting when multiple people are rushed into the room, each trying to confirm the diagnosis… and in mere minutes a plan of action is put into place and surgery team is prepped for backup. Neither is when you are told it’s “life threatening”.

It was a scary situation, and what could have been is too scary to even think about, but not for even a second did I doubt the level of care Arham was being given.

The level of response once the problem was spotted was absolutely amazing and that may very well have made the difference. I will, forever, be grateful towards the staff at SPUH not for just this stay — but for what they do always.

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Be Your Own [Health] Advocate

By now, some, if not most, of my family/friends know that in the early months of last year[2014] I faced a pretty terrifying health scare — a possible/potential c-word diagnosis. 99.9% of the time referring it to as the c-word because it’s just that real still. Many tests, several biopsies, and months of uncertainty later: I had to go through the surgery route to find out with a 100% certainty. In fact, tomorrow marks one year since my surgery.

I can’t tell you how thankful/blessed I was to find out, post-op, that it was benign– that it wasn’t cancer. It was, for me, a stark reminder, to count your blessings, not your problems.

In the days leading up to the surgery, someone reminded me that God doesn’t give you more than he is certain you can handle and that He tests you only to your limits.

Allah does not place a burden to a soul greater than it can bear.” [2:286]

You just don’t realize it. Although, I won’t lie: sometimes, I feel like He gives me credit for more than I think I am capable of handling.

“Verily with Hardship comes Ease”.

While facing the uncertainty, in the months before the surgery, I’ll be honest: I couldn’t keep my mind off the possible “what if” scenario. It’s just not something you ever think could happen to you, unfortunately, until you are thrown into it. Especially at my age! Ironically enough, thyroid [c-word] is most likely to occur in twenty-something-year-old females. Me in a nutshell

One thing I knew for sure from day one: I wasn’t going to be just another statistic. I did my research. I asked questions [after questions]. I prepared myself for both of the outcomes. I was [and continue to be] involved 100% in my health[care]. From day one, I was my biggest health advocate. I’m detail oriented, a planner… and hate the unknown!

Without our health, we are nothing; and yet, most of us take it for granted and not care for ourselves nearly as much as we should. The time you spend on your external physical self [hygiene, makeup, grooming, etc]? That and more of a focus needs to be given to you internally and as a whole. Most of us, especially the younger generations, just don’t make our health a priority. Whether it’s not eating right, exercising [enough/at all], or making the trip to the doctors to make sure everything is alright. I can’t stress enough: preventative care beats the alternative a million times over.

Be your own advocate: make time for your periodical check-ups. Do your research and go in informed. Ask questions. Question them. And best of all? If you aren’t satisfied, seek a second opinion.

I avoided doctors [and OTC medicines] for the first 22 something years of my life like the plague, and then saw more doctors in a year than the rest of my life combined.

I was lucky mine was benign, but if it had been god forbid the alternative– think of this: I was asymptomatic. It was discovered by chance because I already had a thyroid issue that was closely being monitored.

Then which of the favors of your Lord will you deny?

***

On a side note: leading up to the surgery last year, I can’t tell you how many times I was blatantly told [by doctors, surgeons, and/or their nurses]: “honey, if anyone had to choose a cancer type, this is the one they would choose without a second thought”. Thanks, but no thanks. I’ll choose to have NO type. Or “honey, this is the best type of c-word to get”. Yeah, no. Still sticking to the none. So thankful that He, above, agreed with me too.

I understand that this type has a great treatment plan, but cancer is cancer. The last thing anyone that is [potentially] facing it needs to hear is something like the aforementioned mindset. I can’t tell you how upsetting it was to hear that: a direct punch to my stomach. A stomach that was already in knots of nervousness, stress, fear and so much more. I’m not sure if they thought it was supposed to comfort me and put me to ease, but all it did was upset me even more than I already was facing everything I was.

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Verily with Hardship comes Ease

2014, in essence, thus far has proved to be the worst of times and the best of times.

It started off as [relatively] horrible as it possibly could, with the c-word scare and surgery soon thereafter [and the not so fun recovery]. It started off with the many “what if’s”, “how could this be” and “why” questions. Not to mention the most stressful months of my life.

I often had to remind myself that this, too, shall pass.

And in the midst of all this chaos… in the way both spectrums intertwined at the same time… there is truly no other way to explain it in my mind other than: He, above, once again proved: Verily with Hardship comes Ease – [94:5-6]

Most of my family and friends, by now, know that  I am engaged as of early March.

In the days after, someone jokingly said to me that I apparently don’t do anything the normal/typical way. But that is my life. So why would this be any different? For the first time since leaving Pakistan 19.5 years ago, I will travel back to Pakistan mid December. And not just to visit, mind you; to get married there. Why not, right?!

Never in a million years would I have imagined traveling back to Pakistan, let alone to go back for the first time after so many years to get married AND move to Australia immediately afterwards.

 

But alhumdulillah. He is the best of planners.

 

Last year at the this time, it was all about planning/preparing for hajj. This year? Wedding/Pakistan Trip.

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Thyroid Surgery

Two weeks ago, on February 21st, I had my first [and God-willing last] surgery. Thyroid surgery to be precise.

It’s one of the toughest and scariest things, if not the toughest and scariest thing, I have [physically] faced [as of yet] in my life.

It’s been a hard two weeks of recovery thus far but, alhumdulillah, slowly getting better each day. Which wouldn’t be possible without the help of Ami. The first week post-op I wasn’t supposed to move my neck left/right/anywhere and I couldn’t lay down. Yes, I stayed sitting for a week straight and that’s how I “slept”. Ami helped me around the clock, which I truly appreciate.

Night eight, I figured I’d attempt to sleep on my side. In my sleep, however, I decided to be rebellious and ended up sleeping on my stomach. Not a fun way to wake up: sore and painful.

But alhumdulillah.

Thyroid issues are becoming more and more common, but before my surgery I didn’t know anyone who had to have surgery because of one. I still don’t know anyone personally actually. Just that, it’s no fun.

As a result of said surgery: I, now, have a [not so] lovely scar that will remain for the rest of my days on my neck as a reminder. But the more optimistic me is going to look at it as a reminder of what I overcame in the process.

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Thyroid

This blog has been my open journal for several years now. Writing has always been an outlet for me.

I’ve shared my recipes, my thoughts, my reflections, and what’s going on in my life. Except for one part. It’s something I have not shared here, because quite honestly it’s something I haven’t shared with most people in my life. Yes, a select few have known.

So why hide it, you ask? Quite honestly, I just didn’t want to deal with people’s reactions/questions/concerns. No matter how good some people’s intentions may be, it’s just not worth it when you look at the big picture.

Who knew that such a small part of the human body could wreak so much havoc? Or have an effect on so many other parts of the body? I certainly didn’t know to the full extent until about two and a half years ago when my thyroid went, well, crazy.

February 2014 marks two years since I found out I had hyperthyroidism after six months of keeping the doctors guessing. And you know what apparently may have causes/triggered it? A flu or a flu-like virus (like the one that hit me like a brick in September 2011).

While the opposite hypothyroidism is much more common than my hyperthyroidism, for both ends of spectrum I can honestly say: you don’t know what it feels like or what it does to you until you experience it. One of the best and worst things, all at the same time, about thyroid issues is that it’s hard for the outside world to know/realize for the most part. Besides the obvious weight loss, of course.

The constant fatigue? The lack of sleep? The effect on your gastro system? Appetite? Muscles? Constant body aches? Sadly, by the two year mark you become used to the fact that this the new “normal”. I kid you not, at one point or another: it has effected every part of me.

For over two years, I dealt with this thyroid issue. But that’s not exactly what this post is about: it’s about a thyroid nodule that is of concern- a totally unrelated matter [to my hyperthyroidism] in my case. Tomorrow morning, I go in for a thyroid lobectomy (or a total thyroidectomy) [depending on what is found during the surgery].

It’s my first surgery ever, and to say I am terrified and apprehensive would be the biggest understatement. It wasn’t too long ago, afterall, that I would get all uptight about blood draws and injections. But I know He, above, is the best of planners. Everything happens for a reason. This, too, shall pass.

Please keep me in your duas [prayers] and/or thoughts.

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Flu [Shot]

Two years ago I was convinced to get the flu shot for the first time ever because I had been feeling unwell. Guess who got the flu, shortly thereafter, for the first ever in my life that year?

 
Last year? I didn’t get the flu shot or the flu.
While there are a bunch of “recommended” and whatnot shots that are “suggested” before going for hajj, the only required one is the flu shot. So I got it.
 
Guess who got the flu? 
 
Possibly twice. [Considering I had much more than just the “hajji” cough when I got back from hajj end of October and they all point towards the flu.]
 
No, I am not saying that the flu shot causes the flu.
All I am saying is: I have better luck without the flu shot. And if I am going to get the flu anyways, why bother getting said shot?
I think I’ll take my chances.

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Coping with Dementia [Alzheimer’s]

I am no expert by any means, but I have very quickly picked up on some dos and don’ts for when dealing with those with a form of dementia and their families from recent encounters from my experience with PapaThese are my thoughts and thoughts alone! Not one of medical professionals, not my family members, just mine. Mine and mine alone.

One. Don’t judge and say something ridiculous like: “I just talked to [your loved one] for a few minutes over the phone and it didn’t seem like there was anything wrong with him/her”. Thanks, I’m glad you came to that conclusion in the two minutes you spoke to him/her. How about being grateful, that alhumdulillah, there are still normal moments around.

Just think for a second [or ask a direct relative if just pondering over it won’t be enough] what it feels like for an immediate family when [the loved one] cannot recognize them, or know where they are at the very least.

We cherish those moments where everything seems right with the world, and those are the moments that get us through the difficult ones.

So far in our case, alhumdulillah, most “days” run smoothly for the most part. It’s the evenings and nights that pose the challenge in more ways than one.

Two. Yes, I understand what [your loved one] is saying doesn’t make sense sometimes. Deal with it, and let it go. Don’t remind him/her that s/he is wrong or correct them. Play along. Say nothing if you must, but please for the love of God don’t make [your loved one] think harder.

Three. Don’t judge the family for what they say to [your loved one] to ease their mind. Chances are, no scratch that– I’M ABSOLUTELY POSITIVE there is a reason behind it and they know better.

Four. If  you are having a conversation with [your loved one], keep it simple. Enough said.

They don’t need to know a whole life story that will probably confuse them later. And they certainly don’t need to be put through a [political/personal debate/argument]. Not necessary. Chances are some parts [or bits and pieces of many different conversations] will stick in their mind and come back later out of context. Not to mention that it’s not good for them to be over thinking either. 

Simple is good.

Again: these are my thoughts, and thoughts alone about my experience. And they definitely don’t apply broadly to every person with dementia/Alzheimers/Sundowning Syndrome.

Everyone copes differently. What works for me? Writing my thoughts and sharing experiences with my family who get it simply because they are experiencing it tooIt’s not something that is easy to explain. Chances are you have heard of someone with Alzheimer’s, but until you experience it first-handed… it’s unimaginable.

I don’t know if it makes sense or not, but my love/admiration for Papa has grown even more. I’m blessed immeasurably to have so many fond memories of/with him that I cling to on difficult days. I just came back on the 17th from Virginia after spending a week with him and unfortunately had several reminders to cherish the moment. That dementia/Alzheimer’s is ugly. I hate dementia with all my heart and soul, but love Papa with every ounce of me.

P.S. Twelve days until my parents and I leave for a trip of a lifetime, inshallah… for hajj! More on that later.

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Dementia

“… among you is he who is returned to the most decrepit [old] age so that he knows, after [once having] knowledge, nothing.” [22.5].

Dementia. I don’t know whether it’s nice to hate something, but I do. I hate dementia. With every ounce of me.

It’s taken away my maternal grandfather mentally from us, and that is something that breaks my heart. The signs were there for so long, but I can’t begin to explain to you the rapid changes in just one month’s time. You just had to see it to believe it. I don’t think I would have believed it if I wasn’t experiencing it in front of my very own eyes about someone so near and dear to my heart. For someone with so much worldly knowledge and experience, to now suddenly succumb to something like this and so rapidly… I can’t put into words how much I detest it.

I don’t say this because our family can’t handle it. That couldn’t be further from the truth. Each person in the immediate family has stepped up their game and done more than their share. And done it because they want to.

Even when in your heart you already know [and we knew], when it was finally confirmed by medical professionals: it was so hard to digest and believe. Or even fathom. How could this be?

This too is a test from Him above, and together we will conquer it. It hasn’t been easy, and I know it won’t. But for someone that I have looked up to from day one? I would do anything I possibly can for him.

In some ways, it truly is like having a newborn/toddler around. You learn to have patience, and sooth their mind. You can’t leave them alone at all, and your senses need to be at the top of their game 24 hours a day. Yes, even at night when sleeping. You do things for them, and help them with other stuff. They lose their independence and they become dependent on you. Worse, they feel like a burden. How in the world do you explain to, no scratch that… not just explain, BUT show them they are anything but? We would go to the moon and back without a second thought.

And just like when a child’s toy is broken and they bring it to you to fix, you wish you could fix this for him just as easily. But you can’t. It’s broken and we can’t do anything about it. We can, only, help him physically, but that will never seem to be enough.

Amongst the family we have been talking about how so often we remember in our prayers our physical abilities, but how often do we pray to retain our mental abilities? Each part of the human body, plays such an intricate role and together makes the human body whole. Even with one deficiency, it’s as if the whole person is effected.

I’ve thought a lot about dementia lately, and every time I see Papa react a certain way, I wonder if he feels it. If he feels confused or senses something isn’t right. We, obviously, know things aren’t right. That he is confused to say the least. But we can deal with it. But I hope to God that to Papa, inside, he doesn’t sense that.

I pray to Allah SWT to make it easy on Papa. To give his mind peace. To give us strength to take care of him in the hardest of days. And that we continue to do it whole-heartedly.

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Annual Screening

With Susan G. Komen for the Cure Foundation in the news so much recently, and the topic weighing heavily on my heart, I figured now would be the perfect time to talk about this.

Cancer. Probably one of the most despised six letter words in the English dictionary.

I can’t explain to you the number of times I’ve started a blog post on the ugly and scary word that is Cancer. Just in the past few months we’ve had so many stories hit close to home, unfortunately, with deaths because of  women-dominant cancers, like breast cancer.

If you know me personally, and talk to me regularly, you are probably well aware that lately this has been my thing — to convince my loved ones to get their annual visit in for screening.

A few family friends have lost their lives to breast cancer just recently. The mother of one of my brother’s friends (and college roommate) passed away just a few short months after diagnosis a few months ago of a woman-dominant cancer. My cousins’ friend (a teenager) passed away early January 2011 from cancer just a few weeks away after her father passed away of a different cancer.

Time and again, we are reminded how fragile life is.

Everyone knows someone effected by cancer. I’d be surprised to hear from someone isn’t.

I urge you to get regular screening. Early detection is the best chance for a treatment and/or a cure! I can’t stress it enough. If you are an adult female, go get your annual mammogram and get your annual GYN visit in. Take your (female)  loved ones too. You could, in all seriousness, be saving a life. So many things of this nature can be treated and cured IF they are caught early enough!

The momentary discomfort, in hindsight, will be worth it, won’t it? YOU are worth it!
If not for yourself, go for your loved ones. You could be saving them the heartache too.

While it would be nice to not have to worry about such things, the reality is we do. Who knows, maybe in our lifetime, research will go far enough to make this horrendous disease that is cancer something of the past. That would be something, wouldn’t it?

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Bruise

Over the course of the last few months, my fear of needles and getting my blood drawn has lessened significantly (because let’s face it… after the amount of times I’ve had it drawn, I really should be over it by now). Sometimes, I don’t even feel it pinch when they draw the blood — woohoo! I still look the other way though while it’s being drawn — baby steps!

Another positive thing (glass is half full, remember?) about all this blood being drawn is that I feel like I can finally donate blood! I’ve always wanted to, but my fear of it also kept me back. I told my brother a few months back that I wanted to do so and to hold me accountable to it… but of course just when I was ready to do so, I came down with a cold (and you can’t donate blood while you are sick).

What I don’t appreciate is being left with a bruise/bump/I don’t know what it is after having blood drawn, but it’s sure annoying and a gross reminder on my arm. It happened once back in September too. That time, however, it was just grossly bruised and greenish. Of course, it happened yesterday too. This time, however, it’s red and even more gross and bumpy (but not as huge). I contemplated putting up a picture of both of them, but I don’t know if I want to see it on my blog! It took weeks for the first bruise to clear up, so hopefully that doesn’t happen this time!

I wonder if it’s just a case of the nurse not drawing the blood right or if it just happens sometimes or what… because they do this day in and day out. I know some people are prone to bruising easily, but I feel like if that was the case, it would happen to some extent most (if not all) the time.

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