Salut daddy! 😊

Happy Birthday Poem For Father _ EGreetingECards

One very hot morning 10 years ago, my dad received a phone call from the school nurse that I wasn’t feeling well and he should come pick me up. I had only been in school 3 weeks and so obviously, he didn’t fathom that I could have a chronic condition that would change our lives forever ; he just thought I was having issues with my asthma or some random infection and once I was checked out, I’d be good as new. But no! What met him was his baby girl with insanely swollen joints, limping and dragging her feet. The look on his face was completely heartbreaking but we just laughed our way to the hospital, we waited for the test results and the doctor came back with an “I can see nothing wrong with your daughter but just take this anti-inflammatory drugs and the swelling and pain should subside.” So we took the packet of Olfen-75, he took me back to school and went on home. Two weeks later, he got the same call, only this time the swelling was worse and this went on till a point where the doctors recommended I see a psychiatrist because they could find nothing physically wrong with me.
My dad is by no means a doctor, but he is my father! He stood for me, by me, believed me when no one else did, defended me and that’s what I want to talk about today; Parents believing their children. You see, if from that first day my dad had not believed that something was actually wrong with me, we might not be here today. When my teachers, classmates, schoolmates, doctors all believed I was faking it, he never doubted me for a second! Not a nanosecond! He always said,” This is my child and I know her better than anyone else. If she says something is wrong, something is definitely wrong.” For 3 long years, doctors could find nothing wrong with me and they told us as much. They decided to treat me for anything and everything under the sun. (Speaking of which, is it hot or what?!? Keep away from the sun lupies, sunscreen and water are your friends right now. The photosensitivity, the heat, the malar rash, I know things are tough right now, keep the faith my people) Can you imagine 3 years of your child suffering and nothing can be done about it? It’s absolutely heartbreaking. But as a good parent should, you stand by your child, you support your child. We look up to you especially in rough times for we know that if you could, you would take this suffering away from us. So parents, listen to your children, know your child and believe your child. For this is what made me who I am today. Without my parents’ support, belief and encouragement, we’d be on a whole different platform.
So today, I want to celebrate this great man whom I have the honor of calling my father! My number one supporter always, my best friend! Happy birthday ol’ man! Fathers are a special breed, mine in particular has done so much sometimes it’s hard to find the right words to say I love you. Thank you for always being there for me, urging me to fight better and harder, fighting for me when I had not the strength to….So daddy, I wish you blessings upon blessings, good health and long life, happiness and peace of mind and soul. I love you to the moon and back times infinity!!!!  
I came across this letter that my dad wrote to supporters. To parents, spouses, siblings, spouses, friends, we intend to share our journey as patients, supporters and a family. So here is part one of his letter:

A LETTER TO SUPPORTERS…..PART 1.
Where do I start? The beginning? Was there even a beginning? Aaaaah yes! There was! I remember the joy of my daughter’s birth! The rush to get to Mater Hospital to see the wonder of the world that was my daughter Wendy. How vivid everything is. The all-night drinking party, the endless bragging! “Mtoto kama mwenyewe!” Oooh people, the joy! Well, I will tell you what, some things never change! Even in the adversity brought about by her illness, my daughter remains a wonder of the world. Not many people can live with adversity the way she does! Now to the journey; the torturous journey my daughter has had to travel for ten years! When Wendy started feeling unwell, something always told me there was something really wrong. When all around her though she was going through phases of uncertainty, that she was seeking attention, that she was being abused (the nerve!), my parental instinct always told me there was something horribly awry.
The endless visits to hospital that all but took over my life, dwindled my financial resources, got me into a depression (this lasted 3 years), had me wallowing in self-pity, entrapping me in the worst phase of my life. But then there she was! Stronger than everyone around her yet walking on crutches! I thank Wendy for keeping me strong! Inside of me, I was in turmoil but one look at her, a word from her (through all the pain) was enough to lift my spirits.
A lot has been said about mothers and their children. And this is to take nothing away from them because they are heroes but to those fathers living with sick kids, this is for you; Salutations aplenty! Hats off! There is a joy in caring for them however ironic that may sound. It brings out the best in human beings. I know I am a good man and mostly because of caring for Wendy. I don’t feel sorry for myself rather I am astonished that I have the fortitude and the grace to cope! But then again, you have to hand it to Wendy for making it so!
This is just part of the story to ease me into the groove of sharing it with you. More will surely follow!
People, the bond is there, never to be broken! Keep in step with the warriors! Tell them, YNWA! All together, “YOU WILL NEVER WALK ALONE!”

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I am not my hair!

aloI remember the very first time I woke up to find hair on my bed. I was puzzled, naturally, but didn’t give it much thought. This was the first time I had chemicals in my hair and so I thought it was okay, almost normal, that it happened. When you are combated with swollen joints, cannot walk without help, cannot write without writhing, willing yourself not to cry and back pain that just won’t give you a break, the last thing you pay attention to is hair on your pillow. And so it went on. For 3 and a half consecutive years, my longest flare, I lost more and more hair and by this time, it had started taking its toll on my self-esteem. I never told anyone about my hair loss. My dad would bring it up because he could see I had less and less hair and my hairline, or what was left of it, was fast receding. Stephanie became so concerned about its effect on my confidence that she purposed to wake up earlier than I did to collect the hair so I wouldn’t find it on my pillow when I woke up. Bless your soul Steph because that did wonders for my esteem.

This hair loss is what is referred to as alopecia. Alopecia is caused by a great number of things; from the condition itself, Lupus, to the drugs taken to manage lupus such as chemotherapy (yes, chemo is used to treat Lupus patients too) and steroids.

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I talk about it today because for all the time I have been sick, I have been losing hair. I decided to go with dreadlocks in the hope that it would minimize the hair lost. And it has. But that doesn’t change the feeling every morning when I take off my stocking and I have hair falling to the floor. It breaks my heart. And I know, I am not meant to be my hair and everything but in a world where I have/am losing almost everything there is to lose, I have to be devastated. It is not catastrophic. I cannot compare it to the feeling I get when I feel sore and realize another clot just popped up. Or the headache that sends chills hoping this has got nothing to do with the stroke. Or the tingling or numbness that takes over my feet and arms and I curse my neuropathy. Or the pain when I realize I may have slipped another disc in my spine. Or my demyelination is becoming worse by the day and eroding my back. Of course, nothing can compare to this pain but my hair loss is just as much pain for me as the rest are. My alopecia causes situations where I cannot get my hair made because the pain is too much. So next time you bump into someone with Lupus who has shaggy-looking hair and you really feel the urge to make a comment about it, don’t! Things are not always as they seem. It is not just a simple case of ‘laziness’, there are actually genuine and valid reasons behind everything. Sensitive scalps, too much hair falling at a time, pain at the slightest touch so just leave people be. I’ve had situations where even my hairdresser wonders why there is a patch of no hair yet 3 weeks ago, it was fully covered. I had to sit him down and explain the intricacies and how delicate my condition makes my hair. And then I bump into someone and they admire my locks and tell me just how healthy they look. And in that moment, I forget about the amount I’ve lost, and appreciate that that I still have left. Because in the end, I am not my hair!

So, yes, I lose my hair on a continuous basis but I will not be limited to identification just by that. I am so many things and if you are to identify, identify me by any of those other things. And to all my people who have Lupus, whether a ‘veteran’ or just recently diagnosed and your hair is thinning and/falling off, don’t you worry. Never worry about such trivial matters as hair. It will grow back, or it won’t, you are greater and fighting a greater battle than hair loss. So keep at it, keep fighting, keep winning, and keep conquering!

I’ll leave you with a few words from India Arie, “ I am not my hair, I am not this skin, I am not your expectations, no. I am not my hair, I am not this skin, I am the soul that lives within, It’s time for us to redefine who we be, You can shave it off like a South African beauty, Or get in on lock like Bob Marley, You can rock it straight like Oprah Winfrey, If it’s not what’s on your head, it’s what’s underneath.”

 

 

 

Chemotherapy in Autoimmune Diseases.

 

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When you hear the word chemotherapy what immediately comes to mind? Cancer. Bald. Nausea. Vomiting. Infusions. Sterility. Bone Pain? Upon hearing that word, most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it, and what side effects it has on the body. The truth is chemotherapy isn’t only for cancer patients, and affects each patient differently depending on how it is used.

Chemotherapy is a widely used class of drugs to treat many different disorders including, but not limited to:cancers, blood disorders and a plethora of autoimmune diseases. Similarly, it can be administered in many different forms: intravenously, topically, injected, or received orally. Each chemotherapy affects patients individually depending on the type of chemo and the dose given. While many cause hair loss, sterility, and nausea, others do not. This does not mean however, that the drug being received is not a chemotherapy agent.

All chemotherapies work to eliminate the growth of rapidly dividing cells in the body. Some do this by directly damaging DNA, interfering with DNA building, while others simply alter the DNA in a way we do not quite yet understand. The different types and dosages of chemo given are decided by your physician who can determine what the patient will benefit from most.

Lately there has been stir in the media about a young singer named Selena Gomez battling an autoimmune disease called lupus. Selena stated in a recent Billboardmagazine interview that she has “been through chemotherapy.” This statement was met with backlash from every corner of the internet with comments such as: “Chemo is only for cancer,” and “You can’t be on chemo if you still have hair!” Upon reading these comments I was baffled by what little knowledge the general public had on the effects and uses of chemotherapy! Chemotherapy agents are widely used in the autoimmune disease world in both low doses: to help control the over active immune system, and in high doses: to completely destroy the immune system when a patient presents serious organ involvement. Just as in cancer patients, the chemotherapy prevents the rapid division of cells in the body creating the disease; in this case the chemo abolishes the rapidly dividing immune cells causing the inflammation and damage. Even in patients like Selena, who don’t necessarily have any visible symptoms, chemotherapy still takes its toll on the body, and is a highly dangerous drug. At low doses,the patient may experience nausea, malaise, exhaustion, minor hair loss, mouth sores, and possible damage to one’s reproductive system. They may receive their allotted chemotherapy dosing through weekly pill or injection — though you would never know it.

As an autoimmune disease patient myself suffering from systemic lupus, rheumatoid arthritis, Antiphospholipid syndrome and vasculitis, I have undergone both low, and high dose chemotherapy. I received weekly injectable low dose chemotherapy for one year, and a weekly pill form for another year after that. At that low dosing I had significant hair thinning, (especially my head) nausea and fatigue a few days following the injection, and unknown damage to my fertility. Most people around me had no idea I was getting weekly chemotherapy, but I was. No matter how low the dosing, the class of drug and what it does for the body doesn’t change, simply the side effects are lessened. Chemotherapy is chemotherapy no matter how you receive it, or how much. And chemotherapy never ends for autoimmune patients like myself.

No, I do not have cancer, but I go through chemotherapy.
For some reason the general population cannot seem to comprehend this. They believe chemo is somehow not “real chemo” if it isn’t attached to a cancer diagnosis. This is absolutely inaccurate. Our IV bags are brought into the room in the same yellow Hazardous Material Bag, labeled with the same large block letters that read “CHEMOTHERAPY” in all caps, by a nurse who must wear protective gloves when hanging the drug — just as a cancer patient.

Again, the fact of the matter is chemotherapy is chemotherapy. Please do not demean patients going through such an aggressive and life altering treatment if you truly have no knowledge on the situation. The disease you are receiving the treatment for makes no difference to the actual class of drug, and certainly doesn’t make chemotherapy any less “real” — just ask any patient receiving it. Yes, in the lower doses you will receive far less of the harsh side effects, much less than the typical cancer patient, but that doesn’t mean you aren’t receiving chemo. You are simply obtaining a dosage that the world is not familiar with, such as Selena received.

Every patient receiving chemotherapy has a heavy load on their shoulders whether it be for Cancer, Lupus, Scleroderma, Multiple Sclerosis, PNH, or any other illness.
We are all warriors just trying to win back our bodies!

Derived in part from http://www.huffingtonpost.com/chanel-white/chemotherapy-isnt-only-for-cancer-patients_b_8673128.html

A letter from a doctor to those with chronic diseases.

It’s been a while since I was last here. Got a few factors to lay that on but I’m back and on the spreading awareness bandwagon! I came across this letter, written by a doctor to his patients with chronic illness and I think it’s important in shedding light as to how doctors view us and attempt to treat us.

Dear Patients: You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, lupus, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob.

http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

 

The touchy weight subject.

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Time and again, the question, “What’s the worst part about being sick?” has been posed to me. And I believe to every other person with a chronic disease. Well, I usually give the same answer, “The weight gain!” but with a smile so many assume I’m joking and just brush it off. Well, I kid you not, petty and immature as that may seem, that is indeed my answer. I know, I know, between the uncertainty of the next minute and the appointments, the drugs, the pain, the misunderstanding; I should have a better answer than ‘weight gain’ but understand me for a minute. You see, before Lupus and her other autoimmune companions took me captive, I was one of the fittest humans I knew! I mean, having me on your relay team was an almost sure win! (But do I say!) I did cross-country, 100 and 200 meter sprints, relays were right up my alley and all these, without breaking a sweat. But now, even walking is a task. The shortest of distances and I’m huffing, puffing and in all sorts of pain. I know that there are people with Lupus who can exercise and truth be told, I envy them. Because I am not lazy (topic for another day), in fact, I’d love to be able to sprint again. But I know my body has its limits. Sure I can try, and I do, but damn the arthritis! This combination of diseases means each has its own side effects. The arthritis will have my joints on fire in a matter of minutes, the fibromyalgia will have my muscles begging and screaming and cursing my existence and well lupus, lupus just sits there and heightens the effect of all of them! The fatigue, the migraines, the joint and muscle pain, the neuropathy, not to mention the formation of clots…the list is endless.
You see, to treat autoimmune conditions, in most cases, they have to use immunosuppressant medication and the most common one is Prednisone. I remember when I started on prednisone about 8 or so years ago, I weighed about 48 kilograms, pretty standard for a 14 year old girl but this “monster”, it made me gain over 10 kilograms in a number of months, spanning about a see-sawing 20 kilograms in the many years. That’s a lot of unprecedented weight for a young girl.
No one really warns and prepares you properly. Just the diagnosis of a disease is so relieving that when you are put on steroids, you don’t realize that you will one day wake up, look at the reflection and not recognize yourself under those chubby cheeks. Weight gain is mentioned as a possible side effect, but doctors breeze past that to discuss ‘more serious side effects’ like corticosteroid myopathy, osteoporosis, steroid dementia syndrome, blurred vision ( I can see how weight gain doesn’t quite make the list but still….) At that particular moment in time, any drug that alleviates the symptoms is God-send but wait till you try on those jeans and realize they don’t go past your hips or you suddenly are hungry all the time but will still contemplate starving yourself because you’re gaining weight so rapidly or when the twenty minutes after a shower are spent degrading yourself, picking apart your flabby flaws. No one talks about that. I know my bones are wearing away, as are other side effects of prednisone creep up on me slowly over the past 8 years but my weight, that is a battle I fight on a daily basis as I look at those 3 white tablets in the morning and take them anyway because without them, oh, without them I cannot make the day! I’ve tried weaning off them but somehow, I’m just one of the unlucky few who cannot get weaned off prednisone.
You see, it’s not about the fact that I gained weight. I know people are probably reading this and thinking how stupid it is for me to babble on and on about how terrible gaining a few kilograms is. I’m not wearing a sign that says,” I gained weight because of medication.” I’m just wearing the weight. I know, I know. It’s not the end of the world. Trust me, I know. Every doctor and every friend has told me that. I’m more than just my looks. I get it. But that doesn’t mean I have stopped wanting to take pride in my body when I look in the mirror. But the same can be said for people who lose weight from an illness, as well. There is obviously nothing wrong with being overweight, either. It’s not simply about the weight; it’s about how I gained the weight. It’s about the fact that every time I look in the mirror and see a slightly different person, before the steroids, I am reminded that I am not in control of my body. I can go for walks, I can diet, I can go to the gym and shape my body to be exactly what I want, and then it can all change with one prednisone prescription. Just like how I can stretch, exercise daily, take medication, and do everything the doctors tell me, and then it can all change when I wake up one morning and no longer have full control of my muscles.
There are obviously worst things about having a chronic illness. Chronic illnesses permeate every last element of a person’s life, and gaining weight means nothing in comparison to losing the ability to walk, work, see and even talk. I think about those things all of the time, and I know that my appearance is not as important as my body’s ability to function. Maybe it was vain of me to complain about my weight, when Prednisone is a necessity to keep me alive and well- but vanity does not go out the window when you’re told you’re sick. No one wants to hear you complain that you didn’t fit into your dress or that those bruises from your needles look ugly when all they care is that you can still walk and that you can still breathe. But that’s just it. I am still breathing. I am still alive, and I am still a twenty-something female. I will still suffer from sudden lapses in vanity and I will still encounter fashion disasters.
Parts of you change for the better when you are faced with an illness. Parts of you realize what your priorities should be and parts of you understand the importance of seizing the day and not sweating the small stuff. But still there remains, after the needles and the pills, that old part of you that gets self-conscious about the way you look and that obsesses over problems that are not, in the grand scheme of things, problems in the least. It’s easier to obsess over your weight and the fit of your jeans than it is to obsess over the physical pain and the emotional anguish that accompany illness, people cannot see my joint pain, they cannot look me in the eye and see the questions about my future that are wreaking havoc on my brain; they just see the weight.
And that’s why gaining weight has been the hardest part of being sick. It’s something rather trivial that still matters to me, even though people think I should be above vanity. It’s a sign that no matter how hard I try, I am not the only one who has control of my body. It is a visible reminder of my invisible illness.
Till next post my friends, keep well, keep warm, kNOw lupus, spread autoimmune disease awareness!

Let’s talk matters Guilt.

9ec0d3ea5e67c8699e98b9122619794cLet’s talk a little bit about guilt. Guilt brought on by Lupus and I believe any other chronic condition. The feeling that comes from within you because you are no longer the same person, no longer capable of being carefree, no longer living your life. It’s a constant battle to keep up the smiling and pretend that you are okay when you really are not. You are a completely new person; one who has physical complaints every single day, whether you verbalize them or not. Every day health is now replaced with pain, anguish, agony and constant battle for your life. Even to the best of us, we have moments when complaints escape us, far more than we would have thought possible. And as this personal struggle goes on inside me, I still worry about my loved ones; parents, siblings and friends. It’s a “There I go again” kind of situation.” I wonder how they put up with me, how they can stand listening to me”, yet, they still do. They bear emptiness, a loss, inside them, because things have surely changed. My condition has taken its toll on every single one of them.
Every time someone asks me how I’m feeling, the one time I feel justified to actually complain (you did ask after all) I feel guilty and most of the times, I lie. I say I’m “just fine” (I know some few people whose heads are turning right about now at the mention of those two words) but, you have to try and understand me. I do not want to be a whiner, yet, that’s the direction this condition shoves me towards. So for my sanity, I have to “protect” your feelings as best I can because listing the insanity going on within my body, heart and soul would be gut-wrenching for us both. I feel that I can protect you best by hiding my suffering because it’s just too much for others to take in. If it’s helluva overwhelming for me, I’m sure they feel the same way. Then there is this helplessness that aches my heart to witness when a loved one realizes that they cannot ease my suffering. So what’s the best solution here? So for all the loved ones with chronically ill people, it’s not only hard on you, it’s twice, if not more, harder on us. We worry about ourselves, we worry about you, and though it may not be fair how we handle it sometimes, please bear with us.
However, with time, through a lot of love and support, I have come to realize that I needn’t feel guilty as such, that it is okay to say exactly how I’m feeling(to some extent) and that I will always have people to support me every day not to feel guilty.
Here are some reminders for you as you sit there on the brink of a guilty bout of self-loathing, one not deserved nor asked for:
• Having lupus is not your fault: You did nothing to cause this. This is not karma or the fact that you consume too many soft drinks. This happened because this disease exists, as do you and life is filled with challenging and often painful things that we must go through. Do not blame yourself.
• You are worthy of care and concern: Accept love and compassion from those who care enough to ask how you are. Don’t push love away. You deserve it (care, sympathy and help) without feeling any guilt.
• Do not let others make you feel like you should never complain or that lupus is not a big deal: If they were to change places with you for a day, their opinion would probably be very different. Accept that they don’t understand and let it go.
• Find your faith: Whatever your religious or spiritual beliefs, I fully believe that part of this battle is a lesson. I rely on my faith, this is part of my journey and I have the strength to make it through. I pray. I vent and ask for peace. Do what is in your heart to help yourself let go and focus on what matters.
• If you find yourself feeling, alone, overwhelmed and depressed, seek help. Join a support group, call a friend who let you vent judgment-free, reach out to fellow lupies or talk with a qualified therapist. Let go of the guilt that comes with this disease. It does not serve you and you did nothing to deserve it. Let it go!
Thankfully, there is a man in my life, this man has been through it all with me, this man holds my hand, this man is my therapist, this man prays for me, and this man is a wonderful human being…… this man, is my father! I thank the good Lord for this man. I am grateful for my mother, for my two baby brothers, those family and friends (they know themselves) words are not sufficient. And you Aunt Suzie, think I’d forget you?! You are special to me! This is going to get very emotional so let me stop there. Till next post, keep it here! And don’t forget, SPREAD THE WORD, CREATE LUPUS AWARENESS!

SUFFERING THE SILENCE!

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There is a stigma, a certain kind of shame associated with having an invisible disease, having a condition people cannot see, one that most people cannot understand, being unable to explain it because you lack the words to make someone see it from your point of view. Trying to hide a “weakness” that causes physical, emotional, psychological and financial torture! Well, no more! The time has come to stand up against and for what we have! It’s not my fault my immune system decided to go berserk! That every single day is a struggle to love a body that I cannot control! That my immunosuppressant medication makes me look better than I obviously feel! What’s it to you that I’ve gained a few kilograms? That my skin is a bit fairer? You only look at the outside! All that matters to you is that now I’m another chubby fella with a stomach I don’t much care for! But do you see the amount of hair I’ve lost? (Let not the dreadlocks fool you! Why you think I have them in the first place?) The concoction of pills I take on a daily basis? The pain I have to endure just to be able to go about a “normal” life? The enormous bills stacked in my hospital file (yes, I do have one) There is nothing pretty about an invisible disease….sometimes, it pays to have the external symptoms, because somehow, it actually validates that I am sick, very sick in fact.
The unpredictability that comes with this condition may be the most painful aspect of this disease. Not knowing if my body will prevent me from living the kind of life I envisioned, the numbing fear that debilitates even my ability to think too far into the future, the morbid thoughts that attack a little too often, watching the fear and sorrow on the faces of my loved ones yet still trying to be strong for me. We do not talk about all these because it is “taboo”! And who the hell made it so?! Certainly not me! I’m gonna break free of the bondage; because my disease has decided to not-so-subtly take charge of me and I urge you, and you and you, to do so too!
It sucks that I cannot remember what it is like to be “normal”. That pain, memory loss, stiffness, medication and appointments have become such an integral part of me that I now cannot remember life before that! To have to work harder at every single thing, from waking up, to walking, to talking and you think sleeping is a breeze? Not that either! Got to work at it too.
I am more than just a diagnosis, I am more than my condition, I am more than Lupus! I will not apologize for my condition neither will I feel sorry for myself. It is what is and that U feel I am less worthy of love, of care, of affection, that is your problem NOT mine! Everyone deserves love despite their battle, their struggles, their scars. I will not lose hope and isolate myself from the world because of things outside my control. Rather I will stand up for myself, I will keep on fighting till I can fight no more, I will keep the hope alive, I will speak of courage and strength. Lupus has brought me to my knees but my joy and happiness is permanent and no one has a right to try and take that away from me….and I sure as hell won’t let them!
I try to be strong and hold a positive outlook on things but there are times when I break down and worry about what the future holds. Despite being scared shitless, all I can do is be brave, for me and all those who walk this journey with me. Time to be passionate about life and dedicate myself to making my dreams come true, with and despite my condition because I will always understand and accept ME….and that’s all that matters!
For all you who live with a chronic, debilitating, invisible disease, be gentle to yourself; be patient with yourself; forgive your body; celebrate your struggle and survival. You are doing the very best you can. Believe in yourself because therein lies a truly extraordinary power!