August 9, 2012

The Lupus is Out of the Bag

It's time to come clean.

The thought has been on my mind for a while now, and I feel like I finally want to share this information with you, make it part of this blog. There isn't, in fact, a reason to keep it a secret, really.

I have Lupus.

I've had it for about 14 years now. I was diagnosed in 1998, it really kicked my ass between 2000 and 2003, got better the next few years, and here I am, fighting it again since 2010.

Since I've had my baby, the Lupus has gotten a bit worse, and while I've been trying to deny to myself that it has been flaring again, today, also by writing it down here, I am acknowledging that it is a problem I need to deal with, and not avoiding it in hopes that it will go away on its own. It doesn't go away on its own. It doesn't go away, period. But if you're lucky, and take care of it, it will let you lead an almost normal life.

This new information I'm sharing, also helps clarify a few recurring themes of this blog: hair loss and weight problems.

My medication of choice in keeping my Lupus in check has been Prednisone. Many doctors will gasp at this, especially when they find out I've been on it for more than 10 years. But after many trials and errors, I've come to accept the fact that while it's not the best medication for me, it's the one that's kept me going when no other med would work.

The problem with Prednisone is that it messes with your body big time. It makes you fat. Bloated fat. No matter how much you try to keep your weight in check, it's a losing battle. Sure, you can starve yourself, but you will still look somewhat bloated, and you will want to kill everyone around you, because your stomach will be screaming for food: it makes you so hungry!

When I was taking 30 mgs a day of Prednisone I almost signed up for the "hot dog eating contest" in Coney Island, because I knew I could win it. Because when you have 30 mgs of Prednisone in your body, you also have an infinite hole in your stomach. You can eat forever and never feel full. It's horrible. (As a matter of fact, one of the hot dog eating contest winner got disqualified because he WAS on Prednisone!)

On my better days, 10 mgs of Prednisone daily has been a better dosage, a dosage that doesn't bloat me much and that lets me stay at a decent weight. Any more than that and I start to bloat again.

Today I'm needing 15 mgs. And, sure enough, within 3 months I've gained 10 lbs.  :(

My hair is another story. Prednisone will make it finer and weaker, and the Lupus in general will make it fall in clumps whenever it rears its ugly head.

So I've had to deal with a few ups and downs already: the hair will start to fall, I will try to stop it from happening by using all kinds of treatments, I will fail because there is nothing I can do about it, I will cry and then cut my hair short, it will take a few years to grow back, and then, if I'm lucky, I get to have some few nice hair years, until it happens all over again.

Not to mention the fact that now my hair grows so slowly, that sometimes it feels like it's actually getting shorter instead of longer. Yes, that's how bad it is.

But I can't complain. If hair and weight are my only problems with Lupus, then I'm blessed. I mean I do have more problems than that, otherwise I wouldn't have to take the Prednisone, but I guess I'm talking from a vanity point of view. I would love to be my old 105 lbs girl!

I also have reasons to thank Prednisone, too: thanks to it I was able to have a baby with no complications, and that was my biggest accomplishment (back in 2000, I was so sick, I would have never imagined being able to conceive and have a baby).

Today I'm more stable than I was when I was first diagnosed, but I feel like I'm slipping through the cracks, and that something needs to change.

I'm not sure what, yet. I'm trying to find out. Maybe I'll need a new medication, or maybe I just need to take it a little bit easier in general.

In any case, I will still try to diet, exercise and pamper myself as much as possible, because having Lupus doesn't have to mean giving up on trying to look and feel my best, even though it's exhausting dealing with the ups and downs, the weight shifts, being fat, skinny, fat, skinny, and with clothes that fit, don't fit, then fit again (that's why I love handbags! They always fit!), with hair that falls, grows back only to fall again later... oh well, no time to be bored, I guess.  ;)


Soos said...

I'm so sorry. At work, we were just talking about a colleague who had a stroke in her 30s. It's been a couple of years & she's still not 100%. She has lupus. So yes, it can be much worse. My husband worked with a woman whose twin died from complications. Both have/had lupus. The survivor has 2 kids.Hope you find better RX drugsthan prednisone, which is EVIL. I'd get bronchitis in the past, take preds, blow up & have the photos to prove it. Take care, E!

NY Spender said...

Soos, it's ok. I've come to terms with it a long time ago... As they say: "It is what it is" and for as much as I don't like to use this saying, in this case it pretty much sums up they way I feel about it. There are also days when I feel much more angry, or upset or sad about it, and it can be an emotional roller coaster, but what can I do other than try to take care of myself as best as I can? I'll continue to count my blessings. :)

Maria Paray said...

Do you re-evaluate every once in a while to determine if anything better than prednisone has come out? I was on prednisone early on for my RA and I swear, I would rather die than go on that again. Luckily, there are other things I was able to go on and for the most part, everything is mostly under control. Still have bad days, but that's ok. The way I see it, I have friends gone from breast cancer, so in the grand scheme of things I'll take what I've been dealt.

You have a good attitude and that's half the battle! The autoimmunes are very sensitive to stress and lack of sleep, so be aware. Also, exercise makes a huge difference - my first rheumy said whatever you do, keep moving - and I try to, it helps.

Good luck to you!

Maria Paray said...

Also - have you considered juicing at all? I'm contemplating after watching Fat, Sick and Nearly Dead. Joe Cross *cured* his rare autoimmune disease through juicing. I saw him at a showing of the movie with a Q&A at the end - very interesting.

Still thinking about it . . .

NY Spender said...

Hi Maria! I have to have a chronic illness for you to come out of the bushes! How are you??? :)

Unfortunately, whenever a doctor starts to talk about getting off the Prednisone, the other medications they suggest are either CellCept or Imuran, both immunosuppressants, kind of chemotherapy. And I am not thrilled.
My doc here and there tries to put me in a trial, and again, I will tell him no. I don't trust these trials. I don't trust pharmaceutical companies anymore. All the new pills have so many side effects, including death, and I'm not up for the gamble. I have a daughter.
My goal is always to try and take the least Prednisone I need. Which means try any other way other than meds(more sleep, less stress, more exercise)to make sure the Lupus stays quiet.

NY Spender said...

Yes, my husband watched "Fat, Sick and Nearly Dead" and he told me to watch it, which I haven't yet. He said the same thing, he actually said that if I watch it, I will definitely want to try juicing. We have been looking at a juicer, too, but holy crap, a good one costs $400!
In any case, yes, it's in the back of my mind. Let me know if you ever make the jump.

Maria Paray said...

Haha, yes, I've been busy, although I try to find time to read your blog!

I am on a chemo drug, but extremely low dosage - my hair isn't falling out or anything! But studies have shown that combined with the other med I take, the long term outlook for RA is much better, with much less crippling of the joints. I ran when he said "chemo drug," but after research decided to try it. No side effects and if the long term prognosis is better, I'll take it. I could be living with this disease a long time! Email me if you would like to talk specifics :-)

And watch the movie ;-)

NY Spender said...

Maria, I've been on an immunosuppressant already too, and it didn't really work for me, that's why I'm resistant this time around.
But of course, whatever works for you, whatever makes you feel better, that's the medication to stick to.
I will watch the movie, I promise. :)

Carol N Wong said...

Hi, I am so glad that you came out of the disease closet and that is just what it is.Lupus is very rough, my friend in the U.K. has it and is taking chemotherapy so you at least doing better than her. Sounds awful doesn't it.

So, I might as well come out, I have Sarcoidosis (Predisone is the best so far for it!)Also a rare T cell auto-immune disease which makes sores everywhere but my face (so far) and Hashimoto's Thyrodis, psorosis,Arthritis, MGUS (pre-Multiple Myeloma)well, that is some of them, enough for now.

I wish that we could really these auto-immune diseases to where they belong.

In the meantime, one of the best weapons is keeping spirits up and hugs, hugs,hugs.

Carol Wong

NY Spender said...

Dear Carol, here is a big hug for you! I'm sorry we have to deal with these horrible diseases, and Sarcoidosis is pretty serious too, and I hope yours is in a mild form. Yes, keep your spirit and chin up, and make the best of every day.