Honesty is the Best Policy

I'm starting this by saying I probably won't be getting on to add my blogs since we have dial-up but I will make sure and date them when I post them all.

People are always asking about my illness, what it’s like to be sick, what my future holds, and the all encompassing question of “How are you feeling?” Well today is the day to finally be honest. I usually lie and say I’m fine or avoid all questions all together. “Why?” you may ask. Because if I’m around my mother and she hears me say anything but “good” or “fine” when someone asks me how I’m doing she has a hissy fit and tells me I sound like I’m complaining to them. The real reason why I lie is because if I were 100 % truly honest with people about my illness and how I feel and deal with it they’d be scared shitless….for lack of a better word. Also, in the past I’m sorry to say that I have lost friends because they couldn’t handle me being sick. They wanted me to always say that I was fine and that everything was lollipops and rainbows and that nothing would ever go wrong. So that’s what I pretend life is, it’s lollipops, rainbows, and gumdrop rain. It's a land where there are no frowns, everyone always says hello to you, nobody is every sick and hospital and doctors have no reason to exist . And then I wake up and face reality. And the reality is that there are only about 2, 3 if I’m lucky, days out of the week that I actually feel good or ok. The other 4 or 5 I wake up in pain and some days that never goes away. I’m always rundown even though I typically get about 9 hours of sleep a night. And I catch every single virus and sickness that anyone around me has because I’m on 3 different types of medications that lower my immune system. I take around 35 pills a day and have roughly 6 or 7 doctor’s appointments a month. Not including any other tests they want to run…cts, mris, x-rays, etc. I can’t work because of all this and so I’m on disability at 24 and some days I just feel absolutely worthless, not to mention the fact that I go stir crazy staying at home all day. I have to live with my parents because the government doesn’t give you nearly enough money to live out on your own if you’re single and disabled. If this sounds like I’m complaining I promise I’m not lol. I’m just trying to help everyone understand what I go through on a daily basis. I love my life and wouldn’t change a second of it. It’s made me the person I am today. It’s made me such a stronger person emotionally and spiritually. It’s definitely been a lesson in humility I needed. I have to rely on others more now than I had ever thought I would need to. This whole experience has made me step back and reevaluate my life a few times and realize what’s important. The dumb, petty little things are not the things that are what gets you through this life. It’s your friends, your family, the moments you cherish, the time you spend helping others, and the time you spend helping yourself. Our purpose here is to better ourselves and others, not to “just get through it”. I honestly don’t know what my future holds in terms of this disease. The progression has slowed down, but it is still progressing. So until they can find something that can get me into remission all I can do is hope and pray. There is no cure and no real treatment for Lupus. They really only treat the symptoms. 4 years ago when I was diagnosed they told me I probably wouldn’t live longer than 5 more years. Well looky here I am! So as long as the progression is being slowed down I’m still buying myself more time. Thank heavens for living in this day and age where they can actually do something for me and help my symptoms or I would be in a world of hurt.
Ok now to explain what Lupus really is and what’s going on with me… For starters the proper name is Systemic Lupus Erythematosus or SLE. And I am classified as having severe SLE with multiple organ involvement. Here’s an excerpt from an article about Lupus than explains it. “SLE is a chronic, usually life-long, potentially fatal autoimmune disease characterized by unpredictable exacerbations and remissions with protean clinical manifestations. In SLE there is a predilection for clinical involvement of the joints, skin, kidneys, brain, serosa, lungs, heart and gastrointestinal tract… The prognosis for patients with SLE has greatly improved over the last few decades with at least 80-90% of all patients surviving ten years… SLE is a complex disorder affecting a predominately young population and shares similarities with HIV infection as regards the propensity for multiple organ involvement, potentially life-threatening episodes, and need for sophisticated monitoring.”(http://cerebel.com/lupus/overview.htm)
Basically what all that medical mumbo jumbo means is that an autoimmune disease is one where your body attacks itself, good and bad cells. My body can’t tell the difference between say a virus and an antibody, so it just gets rid of both. That’s why I have to be on immunosupressants, to chill my system out. Now along with Lupus come a few other fun things you can have, like the antiphospholipid syndrome. This causes a low platelet count, deep vein thrombosis and possible pulmonary embolisms, blood clots in major arteries, miscarriages and stillbirths. I just so happen to have this antibody, and as a result have developed 2 blood clots. The first clot is in my left arm, and a more serious one is in my right transverse sinus, in a vessel that carries blood away from my brain. I’ll be on blood thinners for the rest of my life and I have migraines and seizures from the clot in my head. Lupus is often treated with steroids; I have been on them for 4 years now. As a result of that my bones have gotten weak and I have osteoporosis and the bones of about an eighty year old woman. Lupus also affects the nerves in a lot of different ways. One way for me is that I have Peripheral Neuropathy. I’m not gonna go into the clinical definition of that, I’ll spare you lol. Basically they ran an electrical current through my arms and legs and I have no sensation in all of my left arm, from the elbow down on my right arm, from above the knee and down on my left leg and below the knee and down on my right leg. So if you brush up against me and I don’t feel it that’s why. It also causes me to burn my hands a lot since I hardly feel them at all. I also have Reynaud’s Syndrome which is poor circulation. If I get cold my hands and feet will turn dark purple, they’re also cold feeling all the time. Ok well I have bored you enough with this. There is more but I won’t go on. I hope this helps those who are interested understand a little more about me. And I don’t want people to feel bad for me, so please don’t. We all have our struggles in life and this is mine. And like I said earlier, I wouldn’t change a thing about my life. It’s made me the person I am today and all my hard times and gotten me to the point I’m at. I’m very happy with where I am in life, I love my life. I have a family that loves me and supports me, I have friends that do the same and are there for me whenever I need them, I have a great relationship with my Savior; he has helped me through such much pain and is the only one that could have, and I have the best calling for my church in the world…teaching children. And I know someday I will be perfect. Some days I think life doesn’t get any better than this, what more could a girl ask for? Maybe a boy….. hehe



This is a great song that pretty much sums it all up. If you get a chance find it and listen to it.

Stand Back Up
By Sugarland

Go ahead and take your best shot
Let ‘er rip give it all you’ve got
I’m laid out on the floor, but I’ve been here before
I may stumble yeah I might fall
I’m only human but aren’t we all
I might lose my way, but hear me when I say…

I will stand back up
You’ll know just the moment when I’ve had enough
Sometimes I’m afraid and I don’t feel that tough
But I’ll stand back up

I’ve been beaten up and bruised
And I’ve been kicked right off my shoes
Been down on my knees, more times than you’d believe
When the darkness tries to get me
There’s a light that just won’t let me
It might take my pride, and tears may fill my eyes

But I’ll stand back up
I’ve weathered all these storms
but I just turn em into wind so I can fly
If what don’t kill you makes you stronger
When I take my last breath that’s when I’ll just give up

So go ahead and take your best shot
Let ‘er rip give it all you’ve got
You might win this round
But you can’t keep me down

Cause I’ll stand back up
You’ll know just the moment when I’ve had enough
Sometimes I’m afraid and I don’t feel that tough
But I’ll stand back up