The Dermatologist appointment

Well, after a couple of changed appointment times, we finally went back to the dermatologist.  I don't worry as much about me.  I have Rosacea.  Honestly, until I started treatment for it, it wasn't all that bad.  It's only since I've been using prescriptions that I've had crises.  I was happy to get back to report that Differin was NOT working for me but making things worse.  Dr. K prescribed me 2 different topical antibiotics that should help reduce the inflammation.  My face is really bright red.  I look sun burnt.  I'm not.  I find it fascinating.  I don't really care what other people think, and I do use make up to feel better about it, but I don't worry so much about it like some people do.  I guess I'm just not that insecure.

My son's issues... different story there.  His psoriasis has been spreading in ways that were really freaking us out.  Right now it's taking about an hour to properly cream him, and every night we're finding new areas that are trying to erupt.  It's very frustrating.  Despite using a steroid carried by oil for his head, his head was just so bad!  We were instructed to use this twice a week with a flare; we used it two days in a row and it didn't seem to touch much of it.  I spent a very long time combing through his scalp, using a brush to gently coax the skin up, alternating with the comb.  The next day brought a snow storm of flakes.  So, I wanted to bring up Enbrel to our doctor.  I know that Enbrel is very, very expensive.  I also have 2 boxes in my fridge.  If he started at a small dose, say .4ccs, I could have enough medicine for 2 months.  That should be enough of a trial because Enbrel is like a miracle.  Or, they also use Methotrexate for psoriasis.  I'd really rather use the Enbrel because MTX can affect the liver and he would need frequent labwork, but it's worth a thought.

I expected a fight.  Instead, the doctor brought it up to me upon entering the room and seeing his head.  However, as ready for it as I thought I was, she brought up a few things that I hadn't considered.  The biggest point was that there aren't very many meds for psoriasis, and so there won't be many choices later in life if we exhaust this one early.  Also, since "kids don't get psoriasis", very little research is done on the effects of these products on children.  Granted, we have been down the Enbrel path before, but of course the arthritis that my daughter has made it easier to justify.  So, I am at a crossroads with this.  The main eczema creams (Protopic & Elidel) did nothing for him.  Halobetasol is about the only thing that works for him; the one that we have tried to switch to did NOTHING for him.  I'm tempted to try it again, but this time use Aquaphor over it.  This way, we'll be switching off of it for a while and giving his skin a break from the Halobetasol, and hopefully the Aquaphor will keep enough moisture in to help.  We tried the other one without Aquaphor before.  Since we added it to the Halobetasol it seems to work better.  I dunno.  She ended up doing steroid injections into 2 different areas.  His knee was thick, scaly, really bad and itchy.  His head... one of the many plaques up there was really bugging him.  So, she chose one area on his head and the knee.  Oh, did he sob  :(  If I didn't understand the power of steroids and know how much they could help, I wouldn't have agreed.  Poor little man didn't want to hear it.  He sobbed for quite some time.  Once he felt better we went to the beach  :)  The knee looked purple & black there.  Kind of scary!  Only a few hours later the knee looked wonderful!   While it isn't clear, it certainly looks much better than it did.

The other big DOH! with this is called Olux-E.  She gave us this to try.  Now, if I were a normal person that didn't research the heck out of everything, I'd probably have just used this stuff blissfully unaware.  Thank God, I am not a normal person.  I started looking into this tonight.  What I found on the Olux-E site was this:  "Use in pediatric patients under 12 years of age is not recommended because of the risk of HPA axis suppression.

After two weeks of twice daily treatment with Olux-E Foam, 7 of 15 patients (47%) aged 6 to 11 years of age demonstrated HPA axis suppression. The laboratory suppression was transient; in all subjects serum cortisol levels returned to normal when tested 4 weeks post treatment."  They say that with kids 12+ those symptoms occurred much less often. 

What is HPA axis?  Well, I haven't exactly figured that out yet, according to this downloadable PDF file, it can appear with or without any symptoms, and it can be fatal.  According to the Wikipedia entry, "The hypothalamic-pituitary-adrenal axis (HPA or HTPA axis), also known as the limbic-hypothalamic-pituitary-adrenal axis (LHPA axis) and, occasionally, as the hypothalamic-pituitary-adrenal-gonadotropic axis, is a complex set of direct influences and feedback interactions among the hypothalamus, the pituitary gland (a pea-shaped structure located below the hypothalamus), and the adrenal (or suprarenal) glands (small, conical organs on top of the kidneys).

The interactions among these organs constitute the HPA axis, a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure. A wide variety of species, from the most ancient organisms to humans, share components of the HPA axis^{[citation needed]}. It is the common mechanism for interactions among glands, hormones, and parts of the midbrain that mediate the general adaptation syndrome (GAS).^{[citation needed]"}

^{So, I guess that is one less medicine we will be able to use.  The side effects are absolutely terrifying.  We have enough medicine worries with the meds that my daughter has to inject to feel somewhat normal; we shouldn't have to deal with this for skin problems!  Very frustrating.}  

^{At the moment we are choosing to not focus so much on this.  We are very excited to be going to the Juvenile Arthritis Conference!  We will be in Washington D.C. next month for about a week.  We plan on visiting several Smithsonian museums, the National Zoo, of course see the historical sites, and then on the way home we'll go camping!  I NEED a night or two in the mountains.  We found out that we can camp at the base of the mountain that I will one day call home.  I could very happily live in a cardboard box here.   My heart belongs in God's land where I feel more connected.  I feel at peace, at home with the mountains, the trees, the wind on my face.  My heart just soars seeing the sun come through the trees in the forest a certain way.  And the waterfalls?  Ahhhh... Home.  Yup, I'm a sucker for nature.  It won't be long now  :)}  

My parents & I have role-reversed

My parents didn't have me until my mom was 36 and my dad was 40.  I am now almost 36.  Sometimes I feel like we all got jipped.  My parents wanted kids about ten years before they actually had me.  By the time they had me, my mom really didn't want kids anymore.  I'm not sure if it was because of the death of her mother or if something else triggered something but somewhere along the line, my mother became one of those very pessimistic people that could switch emotions faster than you can blink.  I remember my father never admitting that anything was wrong, but telling me (at age 5) that my mother can't take stress, so I need to not stress her out.  Since any little thing could stress her out, we were doomed.  I remember coming home from school on a day when she was home alone all day to find our TV remote at the bottom of the stairs in pieces, pillows & blankets thrown on the stairs, and the newspaper scattered from the bottom of the stairs to the top.  I think I was 12.  I didn't know what to do; surely she would have heard me come in.  Would she be crying or angry?  What the heck happened with no one else around?  I also don't know when she started drinking, but I don't remember a time that she wasn't a drinker.  She kept it at home; she didn't hang out at bars or drive drunk.  She stayed home and made us miserable.  She was bad enough that I knew by 7 that she needed serious help, and by 14 that she would probably die from some liver disease or another.  (She's why I don't drink.)  Somehow, despite all of this, she was one of my best friends from about age 15 on.

After my sister & I moved out, she chilled out a bit.  She started drinking less, & she did seem to become a little happier.  She still never really achieved true happiness, & never wanted to live.  No, she never really attempted suicide but she threatened us all the time when we were kids.  "One day you kids will come home and find me dead in the car or with my head stuck in the oven".  The oven one sounds so ridiculous now, but it wasn't very funny back then.  She has been amazing with my kids!  I wondered where that mom was when I was little?  However, she absolutely refuses to see a doctor.  She had no prenatal care when she was pregnant with me, and I was delivered by nurse midwife.  She saw a dermatologist once a few years ago, but that's it.  She has suffered stubbornly through all sorts of infections & lived to tell the tale without ever having to go to the hospital.  Maybe she thinks she's made of steel, invincible.  She doesn't care about herself.  This puts me in a huge bind.

For the past few months I've been trying to figure out what was going on with her. I thought she looked yellow, but maybe it was just the light?  And then she tells me on Tuesday that she's dropping weight like crazy and she's sure that something is wrong.  Then she changes the subject & won't go back.  Grrr!  It took me a few days, pondering, talking to people, reading.  Then it hit me:  she has something going on with her liver.  Maybe cirrohis of the liver from years of alcohol use, maybe liver cancer (dropping weight), maybe some other liver disease.  At first I was a little ticked at myself for not thinking of it months ago.  But, it's my mom.  Who wants to see their mom as sick?  Or think about their mom being sick?  Since we were dealing with Kevin's thyroid cancer and Emily's various conditions, I guess it makes sense that I missed it but wow.  This is huge.

True to form, my dad knows that she won't go to a doctor so he's trying to get her to eat at Sweet Tomatoes (salad bar) for every meal.  There, all better now.  I asked him if he wanted me to take him to Sweet Tomatoes next time he has a heart attack.  He says "sure, why not?"  GRRR!!!  I begged her, pleaded with her, tried to rationalize this with her tonight.  I explained my theory, what tests would likely be done, how "simple" it would be to correct if caught early enough.  She tells me no, she doesn't want to deal with it.  I was on the ball, I had an answer for everything.  I know... she's not going to change her mind based off of 2 conversations.  I got her angry enough to hang up on me.  That's fine.  I just want her to think.  I asked her what she'd do if I did this?  "That's different".  She doesn't want to prolong her life.  So, now what?

I know that I couldn't live with myself if I did nothing.  I want to keep her around another 20 years.  Is that being selfish?  Would I be selfish if I made her an appointment & took her myself without telling her?  The whole situation is just very frustrating.  My father tells me that it's because she wants to die before he does.  She's afraid that she will be poor, so she just wants to die before him.  I can't get through to her.  I'm not done trying!  I'm just at a point where they are both being completely unreasonable and it makes me crazy.   I have been praying for the right words, for guidance, maybe a little divine intervention.  I guess I'll just take it day by day.

New blog format

I have so much happen with my little one's arthritis and related issues that I tend to focus on, but we have plenty of other newsworthy things to write about.  For me, writing is therapy.  Once I write about things it's like a release.  I think that I will now keep my other blog purely about Emily's MCTD and health issues.  This one will be for everything else. 

My 9 yr old is an old lady that turns purple (& other fun stuff)

For many different reasons, our link has changed!  Come visit us at our new site!

I will cancel this site in about a month.