You are here: Home / Archives for Auto-Immune Menu

Progress & Pokes

February 7, 2013 by 6 Comments

Yesterday I was sent to UCLA to be poked and prodded and peered at.

I’m a modern marvel to be studied.

Here we go good plasma here we go *clap clap*

I came home feeling emotionally spent, tired of my life revolving around treatment plans and drugs. But also thankful I had come far enough to be able to take myself to the appointment and to be so far removed from the threat of ‘scary’ illness no one ‘had’ to come with me to just hold my hand.

But maybe they should have, just to keep my hands off of other things. Because despite my antibacterial lotion and my constant hand washing, I picked up a stomach bug and spent the night enjoying the company of the nearby toilet.

After a few hours sleep I woke up feeling much better, but not well enough to head to my treatment. I needed some rest, some tea, and maybe a little toast. I also got some much-needed perspective.

I got a stomach bug and it didn’t land me in the hospital.

I got a stomach bug and it didn’t land me nearly comatose and in need of my husband’s help.

I got a stomach bug and it only lasted through the night, not extra hours or days which usually happens to me when I get an ordinary virus.

I got a stomach bug and like a nearly normal person I could function during and after.

With my immune system there wasn’t much I could have done to avoid getting sick. But when there is something I can do, or you can do, it’s a no brainer. In fact, in some cases I count on you to help me remain healthy. Because this time I was lucky. It was a stomach bug that my body handled. But it won’t always be so easy.

The last time the family was hit with the flu everyone had it for about 24 hours. I had it for a good 72 hours and was watched over by my brother. He held vigil by my bedside as I moaned and sweated the evil illness out of me. Even when I do my best to protect my fragile immune system, bugs get through. I then ended up admitted to the hospital as doctors managed my pain and dehydration, my labwork showing influenza A in my system.

That’s where you come in. That’s where herd immunity comes in. That’s where vaccinations matter. Every type- from a simple flu shot to chicken pox to whopping cough and measles, mumps and rubella.

Liz over at Mom101 has a great reminder as to why we need immunizations and why, here in the states, we take them for granted. You can also contact your Congressperson to ask them to make global vaccinations a priority. No, they wouldn’t have stopped me from getting that stomach bug yesterday, but they do save the lives of millions worldwide who contract many different diseases that can be easily contained if only everyone participated or could be immunized.

As someone with a suppressed immune system I am begging you to take vaccines seriously and to join the effort. Do not take modern science for granted. Remember why we need them and why people like me need you to get them.

 

Filed Under: #SUCKITLupus, Auto-Immune Menu

All That Matters Is That I Will Have Gone to More Colleges Than Sarah Palin

January 25, 2013 by 10 Comments

My treatments continue. They continue frequently enough that I joke I’m going to move into my rheumatologist’s office during treatment week just to make the commute easier.

All I need is a shower. I mean I’ve got my comfy pillows and blankets. There’s a tv. A fridge. I’m all set!

Day 1 of 3 #ivig

But as my life continues…as this ‘new normal’ continues…I need more.

Right now, I’ve become healthy enough to wake up, get the kids to school, take myself to treatment, come home, maybe cook dinner if treatment didn’t kick my ass too much, and rinse, lather, repeat.

Non-treatment weeks are better. I can handle some very light housework. Like maybe picking up some toys around the house, a load of laundry here and there. Dinner, dishes. You get the idea. But it all depends on the day. We’re trying some physical therapy, but that too depends on what my body is up to that week. Right now it hates the cold and all the pools are too cold for water therapy. I need a HOT TUB in order to exercise. So I walk the dog, but my doctor doesn’t really want me walking on concrete a ton so Nicky and I don’t go too far. We’re also eating rather well around here. I’m even working with a dietician to try to get these steroid side effects under control.

occasionally I go to a store. I say ‘a’ store because that too is about all I can handle. Well, that’s not entirely true. I could probably push myself and go crazy and run around all damn day but who are we kidding- I tried that and it only landed me admitted to the hospital up the road every few weeks. So while I might be capable of more, I’m limiting myself. Make no mistake, I loathe limiting myself. But I’ve learned I must if I want to live.

But part of learning my limits is also knowing when to expand them ever so slightly.

So as I start my next round of treatment, I will also be starting to close a chapter in my life I’ve been trying to close for twenty years.

TWENTY YEARS.

What many people may not know is that I never finished my degree.

I was one of those interns that interned herself right into a full-time gig. I was on-the-air reporting at 20 and anchoring by the time I was 22.

As a matter of just wanting to finish I tried to go back several times, but work always took over. There ended up being a string of universities and community colleges from Michigan to Ireland to Florida to California where I tried to wrap up what I had started.

Now I find myself disabled, IV in my arm every 2.5 weeks, and needing something more in my life than the endless string of lab results. No really, that’s what I get excited about these days. Lab results. Want to know what my last C-reactive protein was? I can tell you…

I can’t handle much. I can’t type for long, as my fingers cramp up. I can’t physically sit in class, so I have to attend only online courses that allow for me to make my own schedule around the days I’m doing well and the days I’m not doing so great…but I can handle a bit. And by ‘a bit’ I really mean a tiny bit. If I can sit here and read while being pumped full of IVIG, there is no reason I shouldn’t be reading a textbook. That’s my theory anyway.

So as of today, I’m officially, and once again, a student. I’m not much of a student, but I’m a student. 6 whole credit hours. Enrolled as ‘disabled’ which, I won’t lie, hurts a bit emotionally to check that box. But I am a student. Which is a step up from being incapable of getting out of bed, incapable of getting the kids to school, incapable of getting myself to the doctor. Slowly…slowly we’re adding things.

The kids are excited…they want me to do homework with them, at the kitchen table just like they do. I think they envision us all using crayons for projects together which makes me grin.

My husband is laughing, knowing that eventually I will have to leave the local community college online learning for a UC online learning system and he’s DYING at the thought I *might* graduate from someplace like USC (which pains me to type) … having been raised an Irish fan through and through.

My Mom is proud of me. This is a big step for her daughter who was losing organs left and right not too long ago and is now, finally, doing something for herself instead of trying to make sure everyone around her is still OK after the ‘crisis.’

She’s right, of course. Moms are like that. I’ve spent so long trying to get healthy but as the doctors worked to figure out HOW to get me healthy, I worked to make sure everyone around me was ok. That was my only concern. Because no one was ok. We’re still not OK. We’re adjusting. And I finally had to take a step back and realize we’re never going to be ok until I learn to make myself whole…to make myself happy…to make myself ME first.

I’m headed down that road now. And I couldn’t start down that path until the doctors figured out how to stabilize me. To make sure my organs were safe. To convince me I wasn’t going anywhere, that this was under control, relatively speaking, and life could move forward.

Life can move forward now.

For me. It’s going to move slowly, but it’s going to move. It’s going to move differently than it did before. I have to feed my mind. I have to do more than fret and hand-wring. There are going to be ups and downs with this and I am learning to build those ups and downs into my life plan. From my long-term life plan to my daily life plan. I’ve done all I can to try to take care of the kids, of my husband, of my family. I have done very little to take care of me.

That seems strange to write when all of this ‘crisis’ has been about me. Me. Me. Always about me. But trust me, in my head it’s been nothing but what it’s done to everyone else. What I have done to everyone else. What I continue to do.

So the next chapter starts as the others come to a close. With doctors having found a plan…finally. Finally after years we have a plan that appears to be working. Slowly. Very slowly. But working. With those I love doing what they need to do as life goes on. And with my stubborn self having learned limits, a bit of patience, a ton of self-control, and a new way of operating as a woman, wife, and mother with a chronic illness.

Scratch that…as a woman, wife, mother, and student with a chronic illness. Hopefully we’ll add graduate to that list this time around.

Filed Under: #SUCKITLupus, Auto-Immune Menu, Stepford Crazies

The Auto-Immune Menu of Love: Vasculitis

January 10, 2013 by 6 Comments

I get asked A LOT what it is like to live with Lupus.

How does it feel? What does it mean when I can’t fly or I can’t walk an amusement park or a mall (why not?) – or why it hurts so much more in the morning or why some drugs seem to work and others don’t. Why some weeks seem great and you are near remission and then suddenly you are back in the hospital…you get the idea.

So I thought every so often I would do my best to walk you through one little special something* I am dealing with physically.  Teach you, show you, do what I can to share my own unique experience in the hopes it might help someone else. Or, at the very least, help others know they are not the only ones out there suffering and dealing with this crap.

Today I thought I’d tackle the reason we couldn’t have Christmas in North Carolina as planned. It’s a well-known ‘thing’ that auto-immune diseases tend to flare up at the worst possible moments. No really. It’s some odd, scientific, auto-immune fact. As you can imagine, our Christmas party was a bit ruined. Cousins were let down and everyone had to just shrug and say things like ‘well, that’s just how it goes.’

So how DID it go THIS time around (because trust me, this is just one of a thousand scenarios)?

Vasculitis.

One of the many reasons I couldn’t (and still can not) get on a plane is because both of my legs are suffering from this ailment along with a host of a million other things Vasculitis brings.

So what happens? With me my feet and legs basically swell up so badly I get bruises, red stretch marks, and my skin actually breaks and I bleed. Yes, it’s THAT bad. Here, let me show you:

Vasculitus

Keep in mind I took this photo this week, well after the really nasty part had subsided around Christmas Day.

My particular auto-immune issues cause inflammation ALL OVER my body. It’s been in my gut, on my brain, my spine, that whole reproductive area that is now gone…anywhere and everywhere. Kidneys, liver, and of course the biggest organ of all… my skin.

My doctor has never told me I ‘couldn’t’ go anywhere due to my disability because he firmly believes the emotional and mental lift from being able to occasionally see family or friends helps me more than any drug and outweighs the risk. That is until now.

He said if I were to get on a plane with these issues, he would be basically writing me a prescription for a blood clot.

Those are bad.

I was told to put my feet up, stay off my feet, and to basically ‘rest’ as best I could (I’m sorry but I really hate that…I mean ALL I DO IS REST DAMMIT) while making sure Santa and his elves had fun.

We’re now into January and my ankles and legs are better, but not entirely recovered. Ok so they look like tree stumps with bruises and red splotches. I’m such a sexy beast.

But hey, I can walk on them now…where as before it HURT to go up and down stairs, make myself  a cup of tea, shower, you know…move. Yes, things are much better. But I would recommend you steer clear of Vasculitis if you can.

That being said, it just sort of comes along with the auto-immune menu of love…and now you know a bit more about my daily life.

 

*that special something could be ANYTHING related to auto-immune information. I am not a doctor, I do not claim to know a damn thing about any of this other than WHAT I AM EXPERIENCING – so please, do not take anything I say as health advice, or even slightly competent advice…talk to YOUR doctor, talk to a licensed medical professional…this is just ME and if there is one thing I have learned with my illness, it’s that I am not normal. 

Filed Under: #SUCKITLupus, Auto-Immune Menu
«Previous Page