my new hair

hey, look at me! I have a cool new haircut :)

less drugs, more pain, still feeling better

I've stopped taking Savella and Imuran. The good news is that my fatigue/dragginess/wonky feeling is gone! I can get stuff done again, I am so relieved!

The bad news is that the pain is considerably worse. Getting up in the morning is a beast, ow. I am still taking the prednisone and advil, so once those kick in I feel ok, but then again in the evening the pain comes back.

I feel OK about this trade-off though. I can work through the pain, and there are meds I can take to help with the pain. The fatigue felt unfixable and it was miserable not being able to get off the couch for the past few months. Now I even have enough energy to cook dinner :)

One interesting thing is now that the other drugs are out of my system and the side effects of those drugs are gone, now the side effects of the prednisone are coming back. So I'm hungry hungry and talking a mile a minute again.

Other than what's mentioned above, the main other annoying symptom I have is ITCHING. Two kinds - one is just a general itchiness on my back and stomach - annoying. And the other feels like there is a bug crawling on my arm...really, I SWEAR there is a bug on my arm!!! -- but there's not. Ummm, ANNOYING!!

ta for now.

just an update

so, I hope nobody is holding their breath for blog updates...sometimes I'm in the mood to post, sometimes, I'm just not...

anyway, it's been a long summer, and I'm glad fall is finally here...the hot weather just makes things oh so much more complicated, and not being able to go out in the sun also really stinks in the summertime (love hearing about everybody's fun trips to the beach :(

so, I got quite sick last June, but started taking Imuran which helped clear up my awful skin rash and helped with some other symptoms as well. I had to cut the dosage in half because it was screwing up my liver and making me quite nauseus (and acid reflux), but it seemed to do what we needed in terms of the rash and the half dose cut down on a lot of the side effects.

About a month and a half ago, I started taking Savella, a fibromyalgia drug, to try and help with my aches and pains. Unfortunately, it really didn't help much with the pain, but it did make me feel dizzy/wonky and get chills and just makes me feel kinda blah in general.

I went back to the doctor yesterday, and I'm so pleased that he had me stop taking both the Imuran and the Savella. I was going to ask to stop with the Savella, because the side effects were very annoying and it wasn't helping, so I'm glad he suggested it. And he felt that the Imuran has done its thing, we're going to keep an eye on the rash and I'm crossing my fingers that it doesn't come back.

So that's the update for today. I'm still on a little bit of prednisone (7.5mg) and taking 4-6 advil a day for the pain, but things seem pretty much under control.

I'd rather be taking fewer medications and feel a little bit of pain than taking a bunch of meds that just aren't helping and giving me rotten side effects!

up...and down...and up...and down

man, I'm pretty sure my last post said I was feeling better...well, I was until late in that same day. Then I started feeling yukky again, and have felt yukky all week. Soooo annoying.

Maybe I caught a cold from my son?
Maybe I danced around the house too much?
Maybe I ate something unhealthy or that I'm allergic to?
Maybe I ...
Maybe I ...
Maybe I ...

This is what drives me crazy about this illness. It changes so much, and I can rarely figure out what is causing me to get sicker. I do know that being out in the light and increased stress both really screw me up, but other than that, it's hard to say.

So today I am feeling so so. Very achy through most of my body, but at least that's helped by the drugs, as opposed to low energy which just sucks.

Wish me luck that I feel better tomorrow, we're off to the hot air balloon festival!

feeling better

Man, this illness turns on a dime! I felt really crappy yesterday, and it really sucked. Today, I'm barely sore and feel much better.

Of course, Simon is coughing and sneezing today, so I kept him home from playschool (don't want to spread the germs!).

Anyway, it's so strange that this illness changes so quickly. I'm glad I'm moving back into the "feel better" direction since I had been slowly feeling sicker and sicker day by day for the past week or so. But I have no idea why I feel better!! Could it have been the simple fact that it was a rainy day yesterday, so I didn't get any UV exposure?? Oy, who knows.

not feeling so great

so, it's my birthday, and I'm just not feeling that great. I'm still dealing with the stress of my sweet baby going to playschool...he has another crying fit today as I left :(

I've started classifying how I feel into two different categories: energy and pain. When I was so sick last month, it was a combination of both...intense pain and draining lack of energy. I was having trouble even getting out of bed, much less wrangling my 3 year old child all day.

After "the big sickness" last month, I started feeling better. My skin showed a tremendous improvement, and my energy got a lot better, I could actually get off the couch.

But now the pain is coming back. Gradually, day by day, I just get a little more sore. First I had an achy upper torso, then my elbows hurt, lower back, and now much of my body just hurts.

I really hope that the medication (Imuran) starts kicking in in ways other than healing the skin. I'm still on prednisone as well, although I'd really rather get off of that medication.

Anyway, just a general update, a little whining. I'm having difficulty at this point figuring out at what point it's OK to just hang out on the couch all day and when I'm well enough to actually do stuff. Today, I'm good just lounging around (plus, it's my b-day, I deserve it! :)

My mother and I are working on a sickness scale to track how I feel, so that should be helpful when we get it finished.

the bitter post (plus some not-so-bitter)

I hate it that I have to drop my crying child off at daycare in the morning
I hate being in pain
I hate losing my hair
I want to go to the beach
I want my skin to go back to normal
I'm tired of being tired
I miss my life that wasn't filled with doctor's appointments and medications
I wish I had enough energy to get off the couch and do stuff
Summer is tormenting me now that I am a vampire
My house is a huge mess because I don't have enough space for all of our cr*p

********
on the other hand...

I love my son, husband and the rest of my family, who have been so supportive
I don't live on the streets
I have Hershey's Kisses in my freezer
There's a nice breeze blowing in my window
I finally found a doctor that I trust

lupus sucks.

today...

my elbows hurt. Why is lupus such a weird disease?? Sometimes my scalp hurts, then my shoulders, ouch, my neck, oh look, ow, my thighs hurt...and today, it's my elbows. This disease is so strange and inconsistent.

Other lovely stuff that's going on includes the fact that I'm losing my hair. My hair has thinned considerably over the past year and a half, but I think this may be serious this time. I'm taking Imuran, which is a chemo drug, so I'm not surprised my hair is falling out, but, ummm, it sucks.

I went to my (new) general practitioner doctor last week because my chest had a mild aching feeling all week, and I was worried it was pericarditis (inflamation of the sack around the heart). The doc did some tests, and it looks like everything is ok...now I'm guessing it is just an acid reflux/heartburn kind of thing. Ever since I was so sick a few weeks ago and then started taking the Imuran, my tummy and insides have been feeling all wacky, so this isn't a big surprise.

One question that has been floating around my head lately - could the Plaquenil have actually been causing my terrible rash (it certainly wasn't helping...). I went off the Plaquenil the same day I started taking the Imuran, and the rash went away very quickly. Everything I have read about the Imuran says it takes at least 4-6 weeks to kick in, so if it had an effect on my rash, it would have been unusually fast to start working. Anyway, something to ponder.

I have a doctor's appointment on Wednesday, I will be discussing test results with Dr. B.

it's been a while...

and some major changes have taken place since I last posted in April.

Back when we last touched base, things were going pretty well. I was feeling OK, and my rash was improving. I was feeling hopeful, because I had decided not to start taking CellCept and was pleased that my symptoms were getting better anyway. I was going to yoga a couple times a week, having weekly acupuncture, and had closed my business as a way of reducing stress, and it seemed that these alternative solutions were really helping.

Until...

I took a weeklong trip to Florida to visit my dad and step-mom, followed by a weekend trip to a beach house with friends. I'm not sure if it was the stress of travel, or too much time outside in the sunlight, but the week after I got home from the beach, I became very sick. Severe aches and pains head to toe, low grade fever, fatigue, and the rash got a lot worse - face, neck, torso etc.

Now, those of you who have read this blog will know that I have seen multiple doctors of various types over the past 2 years. I was starting to feel a little silly changing doctors so often, and was not planning to change again. I was happy enough with Dr. C, a rheumatologist in Philly (2 hours away...) who also does acupuncture, but we ran into a problem...I got sick and couldn't get in touch with my doctor. I called the office 3 times over the course of a week as I started feeling sicker, and didn't get a call back. This really started to freak me out. I think they did call me back once, but didn't leave a message, so I'm not sure it was them (restricted number).

Anyway, the point is, I was off to find another doctor. A few months ago, I spoke with someone who said she thought there was a holistic rheumatologist in Long Branch, which happens to be 15 minutes away from my house. I sortof blew this recommendation off at the time because 1. I already was seeing a doctor I was happy with, 2. she didn't give me the doctor's name, and 3. I was a little skeptical that there could be a holistic rheumatologist in the town next to me when I'd been driving all over hither and yon trying to find a doctor I liked.

So, imagine my surprise when I did a little googling and found Dr. Arthur Brawer, holistic rheumatologist in Long Branch. I called him, and was able to set up an appointment for the following day (loved it, he answered his own phone...).

I went to see Dr. B, and was so happy with him. He really is a holistic rheumatologist...I was shocked.

Unfortunately, now that my year and half long quest to find "the one" [doctor], my sickness had progressed to the point where taking the drugs I had feared was now unavoidable. There have been so many instances of irony involved with my lupus so far, and this is just another one. I'd finally found a holistic doctor who is often willing to treat lupus without stronger drugs, but for me, he's recommending I take Imuran (an immunosuppressant drug).

And at this point, I decided to listen to his advice.

Why now? Why listen to this doctor when I'd ignored experts in the field and other rheumys before?

Because I trust this doctor and his philosophy of healing. I know that if he thought we could avoid this medication, we would, but at this point my health had deteriorated to the point that things were in crisis mode.

If you've read this far, I applaud you, narration is almost over, I promise...

I began taking a low dose (50mg) of Imuran 3 weeks ago. I returned to the doctor 2 weeks after my initial appointment, and he was thrilled with the progress, even though Imuran generally takes 4-6 weeks to kick in. My skin was greatly improved; it had gotten so bad that Dr. B was concerned the skin wasn't performing its important functions of temperature regulation and preventing dehydration. He said it was so bad that some doctors would have recommended hospitalization, so the improvement was a relief to us both.

I'm feeling physically better as well, though I am still pretty achy and fatigued. I don't really leave the house much as I'm trying to avoid the sun as much as possible and it is also pretty exhausting, even just going to dinner or running and errand or two.

So that's my giant update...more to follow sometime soon on the emotional effects this is having on me and my family, trying to raise my an almost 3-year-old son without being able to take a walk or play outside...

new doctor and panic (drugs are scary!)

I've been gradually feeling better of the last month or so which is a great relief. The rash on my skin continues to improve slowly, though I wish it would just go away. It is not itchy or painful, but it is unsightly.

I went to see a new dermatologist, Dr. W, a couple weeks ago, and the visit threw me into a bit of a panic. My mother came with me, and she was a bit shocked, she hadn't realized the extent of my rash. The doctor was thorough and is one of the top doctors in the study of skin lupus. Unfortunately, her recommendation for treatment really threw me for a loop. As I had been feeling better, and things were moving in a "getting better" direction, I was surprised when Dr. W recommended I start taking CellCept, an immunosuppressant drug. I was really taken aback, this is a step that I had been dreading, and it really feels like crossing a line that won't be easy to get back over.

She recommended this drug in order to try and get me into remission. She also talked about the possibility of future kidney damage, which really scared mom (and rightly so, the possibility of kidney involvement is not something I take lightly), although I wasn't as concerned because earlier in the week, my rheumy said my tests were nothing to worry about. I plan to address this discrepancy with Dr. W when we get a chance to speak on the phone.

I was upset by this appointment. I am not ready to start immunosuppressant drugs. It just completely goes against my natural health philosophy. It just doesn't make sense to me to suppress the very thing that is supposed to be keeping me healthy, even though the immune system is all out of whack and turning on itself...

It was a very rough weekend...every time I thought about going on the CellCept, I got upset all over again. And I knew my mom was very concerned, so that was a bit of an added complication as well. Mom and I spoke a few times over that weekend, and by Sunday I was feeling better. I had decided that I would give my way a fighting chance for 6 months before going on the stronger drugs. Mom was in agreement that this was an OK path to take, as long as Dr. W was on board. I'm still playing phone tag with Dr. W. The questions I need to address include how strongly she feels that I should go on the CellCept, and what specific indicators she mentioned that indicated the possibility of kidney involvement.

I'm hoping the Dr. W will be OK postponing the CellCept for a few months. I can do tests to make sure the kidneys are not having problems, and if I start feeling worse, I will re-evaluate.

So far, I've been doing fairly well with my lifestyle changes. I recently stopped working (see previous post), so the stress from running our shop is considerably less. I stopped nursing my baby, so that's one less stressor on my body. I joined a gym and have been going to yoga a few times a week. I've been going to acupuncture 2 times a week as well.

My biggest challenge is healthy eating. My willpower is weak (to say the least) when it comes to food. My goal is go have a diet that includes more vegetables and fruits, less sugar and white carbs, and a moderate amount of meat. Unfortunately, I crave sugar and white carbs. I am going to start seeing a holistic nutritionist soon, and am hoping she will be able to help. I found a course at a yoga center called "Healing your relationship with food" - it sounds perfect, but I won't be able to attend this year...but maybe in the future.

These are pretty big changes in my life. I am really working on my mind/body connection, and have put my faith in these alternative solutions. Any positive thoughts pointed in my direction are appreciated!

It's been a tough month...

but I'm *finally* feeling better and having a good day!

I caught a cold from Simon about a month ago and UGH it was yukky. It affected me by causing every muscle in my body to ache, kinda like the flu :( I would wake up pretty miserable every morning...as the day progressed it would get better, but then it would get bad at night again :( I also had (have) this quite annoying lame cough that is just totally unproductive...someone suggested post-nasal drip today and that sounds about right.

But anyway, I'm glad I'm feeling a little better. The stress of closing our store is starting to wind down (someone made a generous offer to help get rid of the rest of our inventory...), and I have a few other good things going on that are cheering me up.

Phew, that was a rough month (a rough winter all told), I'm glad spring is here!

the good news and the bad news

I think I'm finally done doctor hopping for the time being, phew! I drove over the Philly yesterday and met with Dr. Lan Chen, who is a rheumatologist who also does acupuncture. She was very nice, good bedside manner, very knowledgeable about lupus, and a good communication style. She also knows the Dr. Werth, who is a medical dermatologist who specializes in lupus and is part of the same healthcare system. So *finally* I am happy with my doc!! Between her, and my great primary care physician and my local acupuncturist, I should be all set.

When I look back over the past year and a half of docs, each doctor was missing a key piece that I've now found in this doc, so I feel OK that it took me a while to get here...it's been quite a learning experience, really.

So, the bad news...I'm feeling pretty poorly. It was pretty hard to get out of bed this morning, my upper body ached all over, from my scalp to my hips, with my shoulders being particularly painful. It's making it very difficult to figure out what to do with my life, working and childcare-wise. I'm also weaning my 2 year old son, so that's stressful, too, oh boy.

appt. appt. appt.

today was a triple doctor appointment day, phew!

1. the dentist (yikes, it's been a long time!) - called yesterday and they said they could fit me in today - nice that some docs can accommodate so quickly! anyway, the appt. was uneventful, just a preliminary exam, will go back for a cleaning in a few weeks

2. acupuncturist - am glad I found an acupuncturist in the area that I like...left there today and my back pain was gone.

3. general practitioner - I'm very happy to have found a GP that is a good combo of natural and traditional treatments! we agree that the program I have been on from the holistic dermatologist is too much. this doc has a program that has a few supplements, but not a billion like the other program. so...

that means I have to fire my holistic dermatologist. I feel bad about this, but it's just too overwhelming right now - he's too far away, the program he wants me on is too overwhelming, and it's also too darn expensive.

I was able to make an appointment with Doc #2 (see above) after checking with her office and making sure she treats lupus patients. my GP doc took a look at this doc's credentials, and he thinks she looks good. I finally feel like this is moving in the right direction, whew!

I'm weaning off the prednisone, am down to 15 mg. I'm feeling good today...still had some aches and pains yesterday, but today (after acupuncture) I wasn't feeling any pain at all (sweet!).

My skin is getting a bit better, too, though I still have rash on most of my body. My face has cleared up though, so that's a relief.

Compared to 2 weeks ago, I'm doing much better physically and mentally. It's amazing how close you can get to bottom, and the next day things get just a little better...

carrying on

I've found 3 rheumatologists in the NY/NJ/PA area that do research or practice acupuncture in relation to rheumatological diseases, score! Now, to get an appointment with one of them (therein lies the challenge).

Doctor 1:
Emailed her yesterday asking if she sees patients, or if she does not see patients, could she recommend someone who does. Received an email back from her saying the appt. scheduler person would call me back.

The appt. scheduler person called me today, but she said that the abovementioned doctor just told her to make an appt. with the first available physician. I told her that wasn't going to work, that I was looking for a doctor with a specific treatment philosophy. She told me they all treated the same types of patients, and I just paused for a minute as I wasn't quite sure how to respond to that since it's just not true. I told her I needed more information about the doctor's and she said she'd have the office manager call me back with more information.

Doctor 2:
Called U Penn Health Center and asked for a rheumy who does acupuncture and the appt. person found the doctor I was looking for. I still wanted to make sure that this rheumy treats lupus, so I left a message with her office and hopefully they will call me back.

Doctor 3:
I'll call doctor 3 if doctors 1 & 2 don't work out.

I really want to find a rheumatologist who is going to be open minded about alternative therapies. I am hopeful because the docs above seem to offer what I am looking for, so wish me luck that I can work something out with one of them.

I'm also happy because I found another online discussion board where people are a little less uptight and I've found some more similar-minded people. It's called but you don't look sick?

lupus sucks.

it's been a rough month and a half.

Lots of pain in the joints, I felt like I had the flu for a week or so in there.

I started an anti-candida diet that is no sugar, no yeast, no fermented stuff...it's a huge pain in the butt, but supposed to help make my gut healthy, which is a foundation for health...so I'm doing my best to stick to it for now.

The circus of doctors that I've seen over the past few years is starting to wear on me. The indecision and inconsistencies I'm running into as I attempt to balance traditional and alternative medical treatments is stressing me out.

I had 2 back-to-back doctor appointments last Monday - one with the natural dermatologist and the other with my new(est) rheumatologist. Somehow my path has ended up with me seeing a rheumatologist in the Bronx...I'm not really sure how that happened, and although I like this rheumy (we'll go with Dr. H for this guy), the inconvenience is just too great. And it's not like he's exactly what I'm looking for, I went to him because Dr. D (natural dermatologist) got a recommendation for him. But this rheumy is not naturally minded, so I'm not sure why the recommendation came about.

The appointments went fine, but I'm starting to run into conflicting opinions between the different doctors and that is a big stress. I really lost it after these appointments, the weight of all of this is really starting to take its toll. After things had a chance to settle in a bit, I felt better, but it is a lot to deal with.

Although I'm starting to feel a bit like a crazy person, hopping from doc to doc, I'm think I'm finally starting to be able to narrow down what I need. And my mom suggested that maybe I won't find the perfect doc, but at least I should find one who I can communicate well with.

So although I can barely believe it myself, I am still looking for one more rheumatologist. One that is familiar with alternative therapies such as acupuncture. I have determined that this is not impossible. There is a rheumatologist at the Hospital for Special Surgery in NYC that also does acupuncture, and there are 2 doctors over in Philadelphia that do research on alternative and complimentary medicine in the rheumatology field.

I feel like I got a bit derailed with the last referral, and well, I'll just have to deal with that. It's tricky going to so many people, but the bottom line is I need to find someone who I can work with. And driving to the Bronx for a doctor I don't love is just silly.

I did go to a local acupuncturist this week, and it was a wonderful appointment. It helped push me in the direction of working just a little bit harder to find a rheumatologist who can understand the benefits of the alternative treatments.

...

So, this blog is good for something, if only me getting my thoughts down for myself! I've emailed one of the docs in PA, so wish me luck that she responds with a referral or an offer to treat me herself.

If anyone out there reads this and is interested in talking about alternative therapies and lupus, please feel free to comment so we can chat some more!