Greetings from Phoenix!

My oldest daughter and I are home for the holidays!  I'm really tired after the drive, but my joints feel SO much better (as always) from the desert climate.

I went to see Dr. Lavery last week and have officially decided to go on disability.  My skin was TERRIBLE when I went in.  This is what my hand looked like, and my feet, knees, and elbows were equally bad.

You can even see how sausagey my hands have gotten.  My swelling has improved since starting Arava, but I didn't really realize how much constant swelling I had because I see it every day.  He prescribed me Betamethasone dipropionate, a steroid topical cream, and referred me to a dermatologist.  We are pretty much at the end of options though for treatment.  I am going to see if the Derm can get me started on Stelara (approved for Psoriasis, in clinical trials for Psoriatic Arthritis), but I can't get an appointment till I get back from Phoenix.  It is also questionable if the insurance will approve it because I have Psoriatic Arthritis.  ANYWAY, I've been using the steroid since Thursday and my skin is much better.  I'll take a pic to insert later so you can see the improvement after 5 days.  The cracking has stopped, and I do still have some scaling, but it isn't coming off in sheets of skin anymore.  My daughter also got me some Dream Cream from Lush to try.  I put some on one hand today and it has improved even more and is very soothing.  I'll probably quit the steroid tomorrow and just use the Dream Cream the rest of my trip unless it flares again.

I'll try to remember to come say hi occasionally over the next 3 weeks, but you'll have to forgive me if vacation outweighs blogging.

Hope everyone has a wonderful Christmas!

I've felt like a slug for the last 2 weeks.

I'm sorry for not posting the last few weeks.  I went to Baton Rouge to visit my oldest daughter for Thanksgiving.  It was a wonderful visit and I was actually feeling pretty good besides fatigue.  Then came my Simponi shot.  I waited till I came home from my trip to take it so I wouldn't have to deal with side effects while on the road.  I'm so glad I did.  I had a lot of dizziness and nausea almost immediately.  Within 2 days my skin and joints started to flare.  My joints seem to have leveled out, but my skin has been in constant flare every since.  It has gotten to the point that I need to wear long sleeves and long pants to bed because my skin will crack while I am sleeping and bleed.  I went to get blood work done last week for my appointment this Thursday and the nurse said my skin was probably the worst she's seen on anyone in a long time.  On top of that my fatigue has been even worse than my new norm.  So in conclusion my last 2 weeks have been generally crappy.

I have decided I will no longer be taking Simponi.  I believe that the combo of Arava and Butrans is helping my skin and inflammation significantly.  I will accept the need to take 2-4 naps a day if it means that my pain levels and arthritis flares are what I consider bearable.  I don't believe I am employable still.  I have so many issues with fatigue that I couldn't make it through a work day.  I also still do have mobility and dexterity issues that make doing even clerical tasks painful and impossible most days.

So there you have the last 2 weeks and my excuse for not keeping up with my blog.  I will try to do better.  My oldest daughter is coming home Friday and we will be leaving for Phoenix to spend the holidays with my family. I can't wait to get there.  I miss my family every day and I feel SO much better when I am there physically.

My hand in Psoriasis flare.  You can also see the sausagey swelling in this picture.

Soap Nuts and Felted Wool Balls

I decided to try a new laundry routine. Because my skin has been so irritated lately I've been looking for chemical/artificial scent free alternatives to my usual products. To start I went to Amazon.  

Soap Nuts are actually a berry.  They produce a natural soap.  I got the trial pack 10 load size to try.  Felted Wool Balls are exactly what they say they are.  Balls of wool that has been felted.  They are used as a alternative to fabric softener.

So I did a load last night and I am very happy with the results.  My laundry smelled clean when I took it out of the washer.  I didn't have any extreme laundry issues, but there was no stains, dirty spots, or color bleeding left behind.  I threw it all in the dryer with my 3 felted wool balls and set the dryer for it's normal cycle.  I will preface this with I have an old dryer.  It usually takes 2-3 cycles to get my laundry dry.  With the felted wool balls my laundry was dry, soft, no static, and all in ONE cycle!

Lastly the soap nuts are biodegradable and compost able!  If you are a composter throw them suckers in your compost heap when you are done with them.

I give these products all my scaly sausagey toes and fingers up!

Now to give you an idea of costs. Felted wool balls on Amazon were 19.95US (I know a bit costly for a laundry product), but are supposed to last for YEARS.  With the better drying time I'm also saving electricity SCORE!  The sample size of 6 soap nuts which should be good for 10 loads was 6.77US.  It is a bit costly for 10 loads, but I didn't want to commit to a pound of soap nuts and then find out I hated them and be irritated about throwing them away.  I'm cheap and get very stressed about wasting my things.  My next order will be the 1 pound container which is 21.95US and should be good for 200 loads.  The site does recommend if you have a front load washer that you get the soap nut oil because the buts need the agitation to work.  I would think that if you throw them in the barrel with your clothes that they would work fine, but since I have the dinosaur washer I'll leave that to you trendy front loaders to experiment with.

I am going to off the interwebs for the most part this week due to traveling to Baton Rouge, LA to see my oldest child.  It seems like FOREVER since I've seen her besides on Skype.  I'm SO excited.

To those of my readers who are from the US Happy Thanksgiving!  See you in a week or so!

Itch Itch Itch...

Last week I thought my skin was getting better.  Tonight, I'm not so sure.  I have to admit that since starting Butrans and Arava I am feeling better overall.  I do need 1-3 naps a day and that is with getting a good 7 hours of sleep at night.  However my pain level is now what I would call livable.  The pain isn't gone by any means, but most of the time it's at a level of annoyance.  I do still need to take a vicodin every few days, but I was taking 2-3 a day most days before the Butrans.  That is a notable improvement in my book.  I also notice my brain is a bit more scattered.  That is probably the Butrans since it is giving me a steady dose of a synthetic morphine all day every day.  ANYWAY back to the skin.  My hands were looking SO much better.  Still scaly, but no splitting or bleeding.  The scales were also less thick on most places I have scales.  Today though I noticed the scales are getting worse again.  My hands, scalp, feet, and ears are feeling like I've got hives, but no such luck.  It's just psoriasis.

I have my Simponi shot next week.  I am not holding out much hope that it is going to do anything at this point.  I've accepted that I won't be returning to work, and honestly with the Butrans lowering my pain levels, at least I can have a level of comfort I haven't had in over a year while I'm not working.

SO now it's time to practice what I preach and do some occlusion, limit my internal stress, and find some external focus.  I think I'll be doing a lot of reading about the disability system.  If only I can stay awake long enough to get through it.

How can more naps be bad???

I think the novel is going to have to wait.  I'm having a lot of brain fog since starting Butrans and Arava.  Every time I try to write I catch myself doing that head bob nod that you do when you are falling asleep at work.  I just can't sit down and write for hours or even an hour.  This blog is about as lengthy as I can get, and even that is hard to concentrate on this morning.  I am having a lot less pain.  I'd call it "functional" pain, however I am having a lot more fatigue.  Monday and yesterday I needed 2 naps to function.  With the time change I am getting up just after 7, but by 9:30 I'm exhausted so it's time for my morning nap.  30 minutes and I'm ready to get going again.  Then in the afternoon around 4 I'm exhausted again so yet another 30 minute nap.  Keep in mind this is not from doing anything high energy.  Monday I worked on crafts.  There was quite a bit of coloring between naps.  Tuesday I did some shredding, sorting and filing.  Today is laundry day, and I got up, had breakfast, did 2 loads of laundry, showered, and I was worn out.  NAP TIME!

I really like naps, but it is still kind of frustrating.  My pain seems to be under control (this week) but I'm too tired to function.  I'd be glad to keep my pain at the level it is now, but I still won't be able to work.  I can't focus, can't stay awake, have no energy, and still have limited strength and dexterity in my hands.

Oh well.  I'm still giving this till December before I file for Disability.  I'm still pretty resigned to the fact that I will probably be filing for Disability.  For now I'm OK with the fact that I'm swapping some pain for needing more naps.  Who doesn't love naps???

I'm going to take a break..

Due to holiday prep (I'm broke and am crafting a lot of my gifts), writing my book, a lot of traveling, and general holiday mayhem in general I will be blogging less for the next 10 weeks.  I'll commit to at least 1 a week during this time, and in mid January when I'm back from PHX I'll be back to my normal chatty self, I promise :)

I'll leave you with my daughter's "baby's 21st Christmas" ornament. I get her a new ornament (or 2 or 10) every year.

Yank my joints out all "predator style" and stuff

^^I was feeling like this last night and for those unaware this is a "Predator"^^

Today it’s been 4 weeks since I've worked full time.  I still haven't gotten into any kind of schedule, but a few things are getting there.  Tuesdays are my grocery day if I’m not having a flare affecting my feet or knees.  Fridays is my go out to lunch day, again pending knee foot issues.  I love banh mi sandwiches from my local pho shop so I've been having lunch there every Friday.   They have great food and are happy that the white girl likes Vietnamese style coffee. 

I’m a planner and like structure in my life so I still feel like I need more of a schedule.  I had hoped that with less stress and more sleep my illness would improve, but the reality is if anything it’s worse.  I went yesterday about the breathing issues I had been experiencing, and since quitting smoking (yes I do have a drag here and there when I’m out with Mickey)my lungs are actually stronger and better looking than they have been in years.  I had clear lungs, the xray was clear, 98% O2 levels, EKG was good and high end of normal on the lung capacity test.  The decision has been made to send me to a cardiologist just to be on the safe side.  I told the Dr that my pain is constant so he prescribed me a Butrans patch.  It is supposed to be less powerful than Fentanyl, and I will be able to take vicodin on days when I am in REALLY bad pain(HA, that’s every day lately), but should give me more constant relief  with a steady stream of narcotic in my system.  He also cleared me to start taking Arava.  So I got home feeling a bit dejected with all the lack of any news good or bad.  I mean I don't want bad news, but at least with bad news there’s a direction to go in.  Anyway I slapped my patch discreetly above my voluptuous butt bump, and downed a Arava pill.  About an hour later my system had a rebellion.  I’ve experienced these feelings before when I was on Remicade.  It is like every nerve in your body has little needles and anywhere your body is touching anything is getting needled, also every joint has a sudden flare so there isn’t a bad joint, they all hurt like hell and then comes the fever.  With Remicade I would leave the Dr’s office after my infusion and get home, crawl up in the fetal position, and moan myself to sleep.  This reaction has no “fatigue” at all.  If anything I’m hopped up and zooming.  I figured since I was going to be in this torture at home or out I would go try to play poker.  The hope being that some social interaction would give me some distraction.  Also besides the grocery store, Dr, and 3 hours at Urban Crust I really hadn’t left the house since Sunday morning. It was time to get out and be social.  I sucked at poker as usual, and stayed a bit to spend a little time with the boyfriend, but by 9 I was ready to go home and resume the fetal position with crying added to the ritual.  I really wished I could remove all my joints “predator” style (You’d have to see the movie to get it).

Upon waking this morning I do feel better.  I’m not sure if the Arava or the Butrans was the reason for the reaction.  I took the Arava this morning and not having the extreme reaction of yesterday.  I am still pretty flared up everywhere, but the fever and nerve pain has stopped.  I won't know which it was till I change the Butrans patch next week, and may never know for sure which caused it.  My bet’s on Arava since it was SO similar to my Remicade reaction.  You have to remember when you have these immune diseases that are your immune system over working that they are going to react to medications designed to suppress them just as they would a virus.  Having an initial reaction to DMaRDS and Biologicals or even a recurring reaction like I did with Remicade is not unusual or unexpected.  It does suck and it is your and your doctors call if these reactions are livable or not life threatening.  On Remicade I’d still tell you I’d gladly give up 1 day out of 30 to function and even excel the other 29 and I’d do it without a second thought. 

So there you have yet another ride on the side effect roller coaster.  I’m going to finish eating my sandwich, egg roll and Vietnamese style iced coffee and get to work on my novel I was supposed to start yesterday.  I’m now 4000 words behind.  As you can tell I’m a bit long winded so that shouldn’t really be a problem.  See y’all soon!

 No idea what's going on here, but this came up in the Predator movie google search.  I say you go Danny Glover!  If I'd just survived what you did in both Predator and putting up with Mel Gibson in 3 Lethal Weapon movies I'd think about giving the other team a trial run before the world ended.