May is Lupus Awareness Month

I know I haven't really talked about my lupus in a long time, I like to come on the blog world and leave the troubles behind as much as possible, you know embrace the good in my life.  But it's not cured it's not gone it's still there lurking like a stalker in the background of everything in my life.  It's there I live with it because unlike most I have it really good. I am well aware of that, I am also really happy about that. Make sure to check out the information I have included for you below.

This month I figured lupus could earn it's keep and share some resources for those who are seeking to learn more about the disease, find resources to help them or a loved one deal and even learn how they can help to make a difference.

Some facts about Lupus:

• 90% Of Lupus sufferers are women generally between the ages of 15 & 44; 10 to 20% of those cases are generally severe as they carry with them severe health complications.
• 10 % of the cases belong to men, the disease for them develops more severely in major organs
• African Americans, Hispanics/Latinas, Asians, Pacific Islanders & Native Americans are more frequently diagnosed than Caucasians; it does however affect anyone in any race at any time.
• Since Lupus is an Auto-immune disease, there are no known causes for the disease, but stress, infections, and Ultraviolet light is thought to be triggers in the development of the disease.

All of those facts were taken from the Lupus.org website, which is a really great resource for those new to the disease and it's development.  They have a link to local support groups as well as how to talk to your doctor about the disease.

Here is the book I have returned to time and again since getting this disease:

My review here.

One of my favorite blogs to read is Despite Lupus. Sara shares a lot of good information, promotes her book which I keep meaning to get and links you up to a few good resources there as well.

You can find more blogs here and of course you could always just google and find some. Most of these on this list I have read at some point & know they are legit and great. 

So there you have it, some good information on Lupus,  & a few good resources & books. These are ones I can vouch for I'm sure there are many more out there. Swing by and let me know if you have any you think I should check out.

Happy New Week my loves

True Life: I'm Losing my Sight

A side view of your eye, and my eye

I was hanging at my parents house yesterday and happened to catch the show true Life, which is and has always gone above and beyond in showcasing the different aspects that affect today's generation.  As I was watching the show, I kept remembering hearing my doctor's voice as he explained to me my disease, watching the doctor on the show reminded me so much of mine. Watching these kids learn to handle their disease, really reminded me of my struggle to accept my prognosis.  Friday's show really hit home for me as a woman who suffers from Keratoconus, I learned about this disease when I was getting ready to go to medical school, I wanted to become an OB/GYN, which is a strong surgical background, which means you have to have a pretty good eyesight. This complicated things drastically, because as the disease progresses, for some it can lead to blindness, which isn't my case yet, but pretty damn close.

After high school, my vision began to change somewhat and I went and got glasses, then contacts (because I still did sports which meant I couldn't do glasses, gymnastics and cheerleading mostly), not too long after I received my contacts I noticed I couldn't really focus on the computer screen; I thought perhaps my contacts where off somehow and went back to get them changed, my eye doctor noticed that my right eye prescription had changed drastically and insisted I get tested for diabetes. 

I made an appointment that same day with my nurse practitioner and went in, I wasn't diabetic, but once I described all my symptoms she did a CBC and a complete blood panel to rule other things out.  Being me, I called up my uncle who was a Dr and gave him all my symptoms & told him my suspicions, he suggested I speak to my Dr, but he concurred with my diagnosis (gotta love family, keep in mind, I have a nursing background and was on my way to medical school, so, my uncle knew I wasn't just blowing smoke or wasn't being "hysterical").  I went back to my APRN, and with my Dr. we checked out everything, ran all the tests, and my blood panel came back with the numbers that placed me within the range of having Lupus.  We believed that this was helping to affect my eyesight as well, and I coordinated with my doctors, and was given the recommendation of seeing a specialist who dealt with Keratoconus

My first appointment, I was the youngest person in their waiting room, almost everyone else was in their late 50s or older and had other eye issues. When we did my exam the nurse retook the eye test three times because she couldn't believe my numbers where so high. When she left the examination room was the first time I realised how this  disease was truly going to affect my life, and I knew that all the hope I was holding on to wasn't going to fix it, and I broke down, right there at the age of 24 I had been hit with two diseases with no cures, and no rhythm or reason to them. Everything I had hoped for changed.

Before the doctor came in, i pulled myself together, and said I could do this,  it was just something else to work through. No matter how much I clung to my hope, it would die a little more each time as we attempted to figure out which contacts would fit m,, my prescription was so unique my contacts would have to be custom made.  Even before the contacts were made, my eyesight changed again and we had to send back the sample and redo the prescription.

Eventually the contact manufacturer sent a representative, who decided I needed to layer my contacts to be able to see, one soft contact with a prescription then my rigid contact on top to really be able to see. Grand total for all of this?? $600 ....per eye. I didn't mind though I would be able to see, for the first time in a long time without squinting, without any blurriness. 

What my screen looks like to me, as I type

Each time I notice I have to increase the screen view so I can see, heck even to type this, I get pissed. I had huge goals for myself, and due to a unique genetic expression I have had to give up much to my diseases:

Believe me readers this isn't a pity party, there are women who live with Lupus who truly suffer with this disease, and I have had some pretty good years considering. I try really hard not to let it get to me, but when I see shows like this I'm reminded of just how good I have it, and just how bad for some it can get.  Although there is no cure, there are treatments, and each is progressively more aggressive & expensive, from contacts like mine, then comes Intact plastic rings: to pull flat the cornea, to corneal transplant which is the most radical, because it requires a donor cornea.

Watching the young woman who was losing her sight the further her pregnancy advanced made me so sad, cause there would be so much she would never 'see' in her child's life so much she would miss out on.  The little things most of us take for granted, like the expression on a child's face that lets you know they really don't like something, or their delight in little things, yes she will be able to feel, and touch her child to learn so much about them, but something, especially when you could see them before, hit below the belt, and no matter how much we tell ourselves that it's irrational to feel that way, it doesn't matter, it still hurts, that little by little the things you once took for granted are stripped away from you.

I don't by any means believe those who are visually impaired are some how less, but no mater how beautifully described, or how talented the observer at bending words, somethings in this world are truly meant to be seen.

Learn more about Keratoconus here.

All Images courtesy of Bing.com/keratoconus, and "sunset"

Thanks for stopping by and reading

Be Blessed

Panic

recently in the last few days I have been noticing something different about my body. I am beginning to think perhaps my doctors and I are wrong and instead of having an allergy to nightshade foods, perhaps its actually worse, maybe it’s actually IBS.

Now I'm not one to panic and run to the worst possible scenario, but I have been noticing the symptoms actually getting worse. I thought "hey maybe it’s a gluten allergy", but many of the foods I eat are gluten free, as I had gotten in the habit of purchasing gluten free because of my dad’s diet habits (he’s Rastafarian and mostly vegetarian)., Now I'm trying to think if I have changed anything in my diet, did I eat anything different? Drink anything different?

The only things I can think of is I went to target and had a small icee, could that be it?? This has never happened before that I recall (but then again we have established that as a lupus patient I sometimes suffer from the fog and sometimes forget what I just did five minutes ago). Then there are the grapes, those are the only other things I have had recently, maybe it was the subway sandwich? but I only got the regular stuff and never had this problem before.

Since it’s only been a few days since the symptoms have actually gotten worse, I'm going to do a diary entry of all the foods I'm eating everything, if it passes my lips then it gets written down, and I m going to watch and see, if the symptoms fon’t ease up, I might have to call my rhemotologist to come in sooner than my actual appointment.

I'm panicking because each time I think I have a handle on how my body is working it changes, and you would think I would get use to the changes, but I'm not.  Each drastic and scary changes brings with it the grieving process again, as I grieve the loss of another body system to this disease. I tell myself, don’t panic, be thankfully that it’s not as bad as the other’s in the therapy group I sometimes go to, or as bad as the young women who blog about their experiences, but I'm not thankful. I'm Fucking Pissed.  Why am I losing control even though I'm doing all I'm supposed to? Even with medical knowledge of how the disease advances and changes, I'm still in the mode of patient, and this shyt sucks big time. I had just been celebrating because I have had the most awesome time being in the longest of remissions and boom, something new crops up. This is BS.

Now I have a mode of action mapped out all I have to do is watch my food over the next few days. Im just praying its not IBS, I really can't deal with another problem on top of the others I already have, Yes Im grateful Im not as advanced as so many others, but Im happy with what I have I DON'T want it to change. I'm comfortable here I know what needs to be done and I can do this by rote now, this constant change shyt is not working for me. I want my life to be about more than worrying about where the hell the nearest bathroom is, and what is going to trigger an episode. I want to PRETEND to be "NORMAL"
Le Sigh, I know I'm 'normal' but when I have my disease under control I can pretend it doesn't exist too much, but each new symptom forces you to re-evaluate your grasp on your life and your goals, and give up something else to the disease. I want to have regular worries, regular 28 year old issues, about career, love and family, not worry about if my advanced directives are in the right hands, did I include the new big purchase in the will, are my meds all right. thats supposed to be when Im older, you know after I have had a good long life, and Im in my 90s or with the Goddess' blessing my 100s.
UGH the life a chronic disease sufferer, is no fun at all.
Sorry to vent, but if I don't talk about it here, who else will i talk to? No need to send anyone else in a panic, until we know what we're dealing with. Anyway thanks for reading(listening)
Be Blessed and Healthy or strong enough to deal with your issues, my loves

I wish my doctor had

Our Symbol is Pretty but our disease is Not

given me this book when I was first diagnosed, because then I wouldn't have had to learn some of this stuff the hard way. I would have been prepared and therefore ready to take this damn disease on, but oh no he never told me squat. I found this book recently (and held it for a while from the library sorry) while i worked through it.
The First Year Lupus by Nancy C Hanger.  

this book is amazing, and is very clear about how the disease may progress, symptoms to look for and how to talk to your doctor. She covers everything form sister diseases and other symptoms and manifestations of pain (anger & loss of focus) and how to create your support system. If i had this book five years ago I wouldn't have floundered around so much and flipped out on family and friends as much either.


This book makes it all the much better because you learn you aren't a freak nor are those really phantom stuff and your not going crazy.


I think the only reason my doctor takes me seriously is because I come from a medical family and I myself and in the medical field, he is less likely to write me off since I know what the hell I'm talking about but that sad because it makes you wonder how many people doctors write off because they believe they know best?


Either way this is a book to read if you or someone you know has lupus, now if they just made about book about Keratoconus I would be golden.
Blesses be my loves

There is nothing Worse

to a chronic disease sufferer than to be told that if they simply "Believe" that they will be "cured". You wouldn't tell a blind man to "try" harder and he will see, or an amputee that their limb will be restored if they had enough "faith".

It's insulting, it discounts the pain the person lives with, their panic whenever some new twidge appears as they worry about what else in their body is now broken; or how far their disease has advanced now. You don't see their fear that today may be the day they become one of the many who are paralyzed due to an embolism no one knew was there or that they will become one of the many young women who are dead at 28 due to a heart attack or renal failure (kidney).

These platitudes only show your complete ignorance and your abject willingness to ignore the obvious as well as you complete lack of understanding of both the disease and the person's pain.  They make YOU feel better but they only add more guilt and pain to the sufferer because now they know if they need a helping hand your just another of those they can't count on.

The patient already has enough on their plates without knowing that they have even fewer people to rely on. Ignoring the disease because it makes you uncomfortable, only makes the patient feel more isolated than they already do.  And it adds to their stress, if you can't be relied on NOW in the early stages of this disease, where will the patient be when they have suffered from a stroke, a heart attack, pulmonary effusions (fluid in the lining of the lungs) pericarditis (inflammation around the heart), liver failure, renal (kidney) failure, brain adhesions (leading to long and short term memory loss),  or loss of vision, and eventually being told by their doctor that their meds aren't  working anymore?

Keep your platitudes, I only deal in the facts, and the truth. There is NO CURE there is only meds and maybe REMISSION (a small break from the disease) don't insult my intelligence or discount my pain to make yourself feel better.  They can't find a cure when they have no ideas what causes the disease.

Ask questions, get over YOUR fear, because this disease isn't about YOU!!!! You only see it from the outside looking in, imagine being the person who has to live with the disease and their fear. Believe this it could be a whole lot worse.

Signed frustrated chronic disease sufferer.

Wednesday Weigh In

Hey Readers,

It's that time again, since I was off my game last week, I had no physical workouts cause I didn't get off the couch or bed for more than I absolutely needed.  So it was no surprise to me when i stepped on the scale that I hadn't lost weight but gained some instead.
Past weight: 238
New weight 245

Very discouraging to see this number on the scale, so I am actually going to be ramping up the physical stuff this week.  I have two hikes planned for the next two days, today i will be using the treadmill and some weights.

And then i saw this article. on Shine about working out and the common excuses.  I thought it was funny because I know I sometimes use some of these.

To make matters even harder I will now have to avoid food from the nightshade family, which unfortunetly include almost all the veggies and spices I love to eat:
1) tomato
2) white potato & some sweet potatoes
3) eggplant
4( Cayenne pepper
5) pimento which is big in the caribbean home we use it just about everything
6)sweet pepper (capsicum)
7) and some chili peppers

Did i mention when I make my eggs everything but the eggplant goes into them? No tomatoes? or tomato derivatives? I think i should just give up the ghost right now.  No more chicken marsala, no more lasagna? What the hell am I going to eat? 
The reason? Some Lupus patients exhibit a sensitivity to the nightshade family, I have been having some issues with my bowels. I can hear and so can the whole room, peristalsis (which isn't supposed to happen every time you eat), so we are eliminating the foods to see if perhaps they are some of the culprits. Then one by one adding them back in one at a time, and noting by reactions, which ever ones illicit a response are gone from my diet.
I can tell you right now: tomatoes are gone because I had two days no tomatoes or tomate products them my mom made dinner and had tomato paste in her gravy (which you can't tell at all because it isn't noticeable) and I became best friends with the toilet bowl. Now before you say its mind over matter, it was a new recipe she tried and I didn't tell her yet about the foods I have to let go of.

Well thats my sorry tale for the day
Blessed Be

Book Review:

"Women, Work, & Autoimmune Disease" by Rosalind Joffe, M. Ed


This book is great!! I have Lupus, and have found myself struggling with my job, because I need a nap at the most inconvenient times, I get frequent fevers, and infections and just generally get lost in the mire of my self-pity.

This book was both an eye-opener and an inspiration. i wish it had been geared more towards lupus but neither of the authors have lupus so they can't talk about what they don't personally understand. They did use a lot of stories to illustrate their points which made taking the information a whole lot easier than if they had simply "lectured" the reader on what to do. The book is a quick but excellent read on evaluating your career goals and your real health needs, and how to balance the two.

Negatives of the book: most of the women they discussed had diseases that were foreign to me so even though I understand them on a professional level(meaning i know what they are but have never personally experienced them), so unfortunately on a personal level their scenarios really didn't help me. (You can only empathize so much in any given situation before it seems like your pitying the person or situation, since you have no really experience with it)

2) I wish she had given more resources, for life coaches & the career coaches she suggests.
3)She focused more on women in professional setting and rarely discussed anyone not in those fields.

This bothered me because many of the younger women I know who have Autoimmune Diseases aren't all college students or professors.  I understand this book can't cover everyone's circumstances but a few women who worked retail would have helped my friend who has been recently diagnosed with the disease.

Despite those few (more like my personal opinion of ) drawbacks this book was well thought out and equally well written. The questions she included are also very good and really get you thinking.

I would recommend this book for women who are learning to juggle their disease and their lives as well.

happy reading my loves

What fairy tales ...

never told me.

In many of the fairy tales we grew up with as children, the women get rescued and "cured" of their ailments and go on to live happily ever after once they are wed......... What BS!! Yes I'm calling BS on this. I'm really blaming Disney too, those darn cartoons with the perfect endings. (Ok its not really Disney's fault you bought the party line about love and happiness)
No where in any of those stories do these young women actively attempt to save their own necks, except maybe in Belle's case, but in Sleeping Beauty(otherwise known as Aurora) or Cinderella's case??
I mean really why didn't she just tell her step mother to kick rocks and go find a job somewhere? Why stick around for the promise of love and affection if you clean this perfectly?? Isn't that the definition of an abusive relationship?

We all can't be perfect Princesses
Anyhoo that wasn't the point of this blog, thats for another time. I wanted to discuss the concept of the perfect life: one where there is no strife, and you and Prince Charming (or Princess, whateva your preference, I don't judge) live fantastical amazingly perfect lives. (this is why i like the Brother's Grimm tales better than Disney)
Never in these stories do they get sick, never do they have doubts about their choices, never do they wonder about the Prince and his choices (I mean who kisses someone who looks dead? Those Princes deserve at least a weird side eye O_o  ie. Aurora & Snow White).
how different would the story have been if Cinderella had MS?? She probably wouldn't have made it to the ball then ugh?
Or Aurora, what if she had Lupus, when the Prince went to kiss her??

What if they really looked or acted like this would the Princess still have married them?
And what if Belle was suffering from OCD or depression? (guess she wouldn't have had time to fix the Beast then!!)
None of these scenarios would ever make it into a Disney movie because they are bits of escapism for everyone, young and old.  The only real problem that arises is when I see the children on the different wards in the hospital who hold these characters up as ideals, because they don't have their disease or difficulties.  Sometimes it can be could to see role models who are "healthy" (cause I really can't get down with Cindy hanging around with an abusive woman as good story to share with kids, physically she was fine, but ole girl has a few mental issues there); but we all seek to be apart of a group a place where we fit, and having a character on tv who looks like you, or who has the disease you have would go a long way in helping some of these kids have hope ( and lets face it for us adult sufferers too).


If some celebrity endorsed the Lupus Foundation  or talked about Lupus (other than Lady Gaga), it would go a long way in helping us feel like we fit in, and not so much like we are outcasts from the American Ideal Dream. Hell no one would dream of these diseases for themselves or their worst enemies, yet they are here and we have to deal with them and face the reality of them, and it would be nice not to have to feel like a freak when watching tv or movies with their perfect characters.


And feeling like your not alone goes along way in helping to accept your disease.
*It doesn't have to be a celebrity but it seems like no one knows about Lupus and what it is or how it affects you, and people make idiot assumptions all the time (like " So you have a immune disease, Is that like AIDS??" O_o). If someone could acknowledge it then more people would be willing to learn about it, not just when they or someone close becomes a Lupus patient.*
Stay healthy my loves and if not possible at least stay Positive