ouch, lupus hurts!

so, these past few weeks have basically s*cked. I have been in pretty intense pain much of the time, most severe in the morning and the evening.

I've been taking 3 ibuprophen 3 times a day, and it really hasn't been doing much...though I guess it's doing something, because when it's wearing off I can really tell.

The pain has gradually been getting worse and worse, in my fingers, wrists, elbows, shoulders and back...and my ankles are starting to join in the fun as well.

Rolling over in bed at night, especially with my sweet son in the mix, is a big challenge. Lifting 30 lb Simon is getting to be a challenge, I sortof have to lift him with my wrists rather than my hands...

BUT do not despair...hope is on the way in the form of...

acupuncture!

I had lower back pain for years - from the time I was in high school until my 30's. I'd tried chiropracty, physical therapy, exercise...but nothing worked until the acupuncture. And it wasn't a mind over matter thing, either, I really didn't think it was going to work until one day I woke up and it dawned on me that I was pain free - for the first time in YEARS.

So I started up with acupuncture again. I had been getting acupuncture a few months ago, but stopped because it didn't seem to be doing anything and it was a burden financially.

Now that we're in a better place money-wise, and my pain was getting so bad, I decided to give it another try. I figured it was a better path than the "adding more and more drugs" path.

I went to a session on Wed night, and didn't notice much relief, though I may have had a little more energy the next day or so. I went again on Friday morning.

Friday afternoon, I looked at the clock and noticed it was 4pm...and I hadn't taken my afternoon does of ibuprophen yet, hadn't even noticed that I needed it. Recently, I'd started looking at the clock around 1pm or so, waiting for 2pm so I could take my pills. But the pain had diminished so 2pm came and went without me even noticing.

So that's where I stand now. I still have painful joints, but at least it's moving in a feeling better direction rather than the worse-and-worse direction. And the acupuncture worked fairly quickly, so hopefully with additional treatments, it will continue to make me feel better.

I have any appointment with Dr. W (rheumatologist) on Wednesday, we'll see what she thinks.

the current "state of the lupus"

In my previous post, I shared how I have found a new doctor that I am happy with. Well, that's the good news. The not-so-great news is that I feel like cr*p.

I have two major issues going on. One is related to going off the plaquenil for about a month, and the other is not.

First, the aches and pains. Ummm, ow? I'm up to 3 ibuprofen 3 times a day now (that's a ton for me). My shoulders, neck and back (and elbows??) hurt a lot in the morning, are so-so all day long and then hurt a lot at night again. It makes lifting my sweet son awfully tough.

The other issue are the two rashes. I have two distinct rashes, one that came back when I stopped taking the plaquenil, and one that has been consistently there for months now.

There is a rash on my legs...it's sporadic dots (look like small bug bites) on my thighs and a bunch on the back of both my calves. It doesn't really bother me too much, doesn't hurt etc.

Then the *other* rash. This has been the bane of my existence for a while now. It finally has calmed down on my face, so now I have just mildly red skin all over my face. But my neck and chest are covered in red dry rash. And it itches and hurts. My arms are also covered from my hands up to my t-shirt line. This is how I finally accepted the fact that the sun was causing this stuff. Every exposed area is covered in nasty red scaly stuff :( Basically, it's like all the skin on my arms died and peeled off and left dry scaly skin behind (gross, I know, sorry, but it's what is going on).

This arms/face/neck rash is really depressing. I also have hair loss, so I wear a bandanna every day. I've tried lotions and creams, anti-itch and moisturizing, natural and not natural, for the rash, but nothing seems to do any good. It's really frustrating, annoying, painful, and a also embarrassing.

My knuckles are a bit swollen, and for a couple weeks, the fatigue in the evening was pretty bad. Not so much fatigue now, I'm not sure if the plaquenil is starting to kick in, or if it's the ibuprofen or what, but I'm glad that's calmed down.

I'm considering calling Dr. W and seeing if she recommends taking anything stronger than the ibuprofen, or if I should try and tough it out until the plaquenil starts working (it takes a few months to kick in, it took around 5 months last time).

So that's pretty much it for now. Basically feeling crappy and crossing my fingers that the drugs will start working soon. The rash really sucks, it's so ugly.

One bit of good news is that Dr. W mentioned that lupus usually sticks to the one manifestation it shows itself in in the beginning, so since mine is skin and aches and pains, it probably wont jump over and start affecting the internal organs. That was a relief to hear, reassuring.

I've started doing the qi gong again, and hope to add acupuncture soon, too. I'm also seeing a counselor to try and help deal with all this junk.

Hoping to feel better soon!

yes, moved on to another doctor...

so, my most recent posts featured a holistic doctor, Dr. F. After working with him for about a month and a half, I finally decided that it wasn't really working for me.

I did have another appointment with him where we went over my treatment plan. I left his office with over 20 (yes *twenty*) different nutriceuticals & supplements to take, as well as some Chinese herbal tea. He wanted me off the Plaquenil, but didn't give me any guidance about stopping the meds. He also put me on an *extremely* restricted diet - no salt, no sugar etc. - though I believe he recommends this diet for all his patients.

I took the supplements twice a day for a few weeks, but started feeling worse and worse, I'm assuming because I stopped taking the Plaquenil. Back were the aches and pains, back was the early-evening low grade fever. And back came rash #2, primarily on my legs (more on that later, I've determined I have two separate skin issues going on...).

Now, I was not expecting a miracle cure, and I realize that I only gave this treatment plan a very short trial. I didn't give up on this treatment because I thought it wasn't working, but I decided I didn't have enough confidence in Dr. F to continue with him as my primary doctor. I finally decided that I just didn't feel comfortable enough with how we were communicating. I needed a lot more guidance concerning the restricted diet and stopping the plaquenil. Also, he didn't mention anything about staying out of the sunlight (I have finally accepted the fact that I am allergic to the sun...more on this later, also). My mother was extremely concerned about the fact that he didn't mention anything about monitoring the health of my kidneys and internal organs.

So.

I decided to try a new doctor (shocker!).

Although I do feel like I'm doctor hopping a bit, there have been valid reasons to leave the doctors that I have left. And as my mom reminds me, this is the first year of the disease, and we're still feeling our way around this whole thing.

One of the doctors I had been considering seeing before was Dr. Susan Ward of The Consciousness Institute, but it's about an hour south west of Philadelphia, so it's around 2 hours from my house. I originally didn't see her because of the distance, but at this point, the distance didn't seem to matter as much, I really needed to find a doctor whose healing philosophy meshed with my own.

I had a bit of an epiphany and I was able to step back and look at my actions with some perspective. I recalled reading posts in my online mothering forum, and thinking "wow, these mom's really need to add some common sense to their thinking". Well, so did I.

Although I would love the pursue a natural treatment plan, the bottom line is -- I am sick. There is medication available that will help me, even though nobody really knows why. But I am sick and the meds will help, therefore, I should take the meds. It's not like I am taking these pills for no reason, or taking a zillion pills. So I finally faced up to this fact, thereby allowing myself to go back to a rheumatologist, rather than a naturopath or other doctor who was not going to have me on plaquenil.

So, back to Dr. Ward. The first appointment went very well. She is thorough, thoughtful, willing to answer questions...and she is supportive of alternative therapies in addition to the traditional treatment (she recommends meditation and acupuncture, aw well as natural supplements). So far she has been conservative with the meds, which is really what I'm looking for. I was looking for a doctor that would really look at me as the patient, rather than just prescribe meds based on a generic treatment plan (this is a similar experience I had with my son during his first year - please look at my baby, not just a growth chart!!).

So besides the fact that she is two hours away, Dr. W seems to be the doc for me. She did recommend me finding a rheumy that was closer and associated with a University hospital, in case of emergency, and I'm working on that. There's no real hurry because I have seen Dr. Buyon in NYC and she is associated with NYU hospital.

It is a big relief to have found a doctor who I feel is on the same page as me. Now hopefully we will get my health moving in the right direction!