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.

Happy Halloween!

Halloween has always been one of my favorite holidays.  I'm not a big costume person, but I like the ghosts, witches, goblins, zombies, orange, purple, black.  I could go on and on.  I love making my house all Halloweeny.  When my youngest daughter moved out a few months ago I gave her all our Halloween decorations because it's her favorite holiday as well.  So I've been looking for good deals the last month or so, and though my decor is minimal I'd like to think it's "classy".  OK, classy for me hahahaha.  I'll be haunting all the stores for clearance Halloween next week to see if I can find some "I'll die if I don't have that" super deals.

I have an appointment with Dr Lavery tomorrow to see if we can find the cause of my "shortness of breath". I kind of feel like I should have just kept smoking.  I miss smoking even if I don't miss feeling like I've been licking the cat box every morning or hacking up yuck.  I also know I stunk because of it because I can smell the stink now on anyone that smokes.  I guess I don't really miss that.  Not high up on the sexy scale there is it?  At any rate I'm not smoking and I miss the act of smoking.

I have also come to accept that I probably won't be returning to work in January.  I will be discussing filing for Federal Disability with the Dr tomorrow too.  In an effort not to have a huge pity party about this I have been dream real estate shopping for a house in Phoenix.  I've decided I'd really love one of the small houses that are there from the 40s-60s.  I love the architecture of these houses.  They are in my price range even with the electrical and plumbing updated.  I think when I am there in December for Christmas I'll see if my daddy will do some driving around with me to see what areas these houses are in.  If I can find something in a safe neighborhood that has the safety update done AND in my price range it would be awesomesauce!!!  I'm not ready to buy yet, but I'm a planner.

I'll be sure to come back on after my appointment tomorrow and let you all know what is going on, or at least as much as I know.  Have a happy and safe (and a little creepy) Halloween!

Yeah, I'm plagiarizing myself!

On Inspire today someone asked for people to post their journeys into P and PsA.  I did it and realized that I had never actually written it all out.  SO you all get to benefit from my novel warm up posting.  Here ya go, the journey into Hell...

I was diagnosed with Psoriasis in 1998 after having a bad reaction to a Anthrax Vaccine. Soon after I started experiencing severe bursitis in both my hips. In hindsight this was probably the beginning of PsA. Swelling of the bursa in your large joints is a common start to the damage of the actual joints that happens in PsA. I was discharged from the Army because the swelling and pain in my hips from the bursitis had gotten to the point I couldn't do "soldiering" such as qualifying with my weapon in the prone position, run the 2 miles for my PT test, pass the sit up portion of my PT test because my hip flexors were already starting to be compromised, among others. When I had my VA appointment the Army decided that my P was service connected. I moved forward with life, found a job in my military trained career field, and got the typical creams, steroids and muck that was available for p at the time. Around 2000 I started having many more symptoms that again in hindsight were probably PsA. Pain deep in my hip joints, stiffness of my hands, lower back pain for no apparent reason, fatigue. I went to several Drs and was generally referred to a Orthopedic Surgeon. Of course there was no sign of actual arthritis and was again denoted as Bursitis and given a steroid shot to my hip since it was the most usual place for regular pain and sent on my way. In 2004 I was having a particularly bad P flare and was sent to see a dermatologist. He said it was time to discuss DMARDS and Biologicals, and suspected because of my other symptoms I was very likely actively into PsA as well. He prescribed me Methotrexate and it was like magic! My skin cleared up alot, my joint pain was SO much better, but with that magic came some side effects which were not so pleasant. I was taking the pill form and would be so nauseated for 24 hours after taking my MTX that I would actually have a migraine induced from it. I was also very fatigued, more so than usual. The Dermatologist switched me over to the shot form of MTX and suggested I take it at night before going to bed and have some toast and milk before going to bed as well on MTX nights. This seemed to take care of the nausea. The fatigue was something I decided was a necessary evil to have my beautiful skin back and finally have some joint relief. The magic of course was short lived. About 6 months before the joints started really screaming again. The Dermatologist suggested I go to see a Rheumatologist. The Dermatologist had noted in my records that he suspected that I had PsA already, but I needed a Rheumatologist to make it official. Of course I got one of those Doctors who won't make a call officially until they have hard proof of it. She agreed I did have an immuno based arthritis, and I did have psoriasis, but she wouldn't designate it as Psoriatic Arthritis in my records. Just Psoriasis with presentation of multiple joint Arthritis. This was all fine for me at the moment as long as I was getting the treatment I needed which was biologicals and at this point pain meds. She put me on Enbrel and gave me a script for Vicodin and sent me on my way with check ins every quarter to check blood work and see how Enbrel was helping. Again it was MAGIC! My skin was totally clear in a matter of weeks. I was back to working 60+ hours a week, traveling for work, going out with friends. I was in heaven. Then slam on the breaks! I returned from a few days in Houston and had a fever of 104. I went from fine to pneumonia in less than 24 hours. I have been fortunate with my medical professionals that they are pretty open to inter discussion about my issues so when I went to my PCP for the pneumonia she immediately called my Rheumatologist. The decision was made to stop Enbrel and once I was recovered from the pneumonia to come in to see what to do next. It took me over 2 weeks to actually be functional again. Not only do biologicals make you more susceptible to infection and illness,but it also makes recovery a longer process. I was then started on Remicade with a low dose of MTX. My body has a long history of becoming immune to meds quickly and the Rheumatologist decided we'd use MTX to slow down my bodies natural defense of becoming immune to everything. Remicade wasn't the magic that MTX and Enbrel were in the beginning. I did feel less flared most of the time, but it took about 2 months to really kick in. Slowly but surely my skin cleared, and my joint swelling lessened. I was back to wearing shorts and tank tops. I even wore a swimsuit again! I was dancing, traveling to India for work. Life was looking pretty good. I did eventually get to the point I couldn't tolerate MTX so about year 2 of Remicade I stopped MTX. My body started doing its thing pretty quickly and my Remicade infusions were becoming less and less effective. My Rheumatologist started upping my dosage and frequency, and went back to vicodin for pain as needed. By year 3 I was at max frequency and max dosage of Remicade. I was also needing vicodin at night to be able to sleep because I was in enough pain that I couldn't find a comfortable position to sleep in. Many nights I found the only position that was comfortable even with vicodin was in my recliner. I had my friend move my recliner into my bedroom so at least I could sleep in my room and not be taking over the common living areas of my home with my disease. I also started noticing that my minimal dosage of vicodin wasn't working and approached my dr about changing medicines. I have been using pain meds for bursitis for years and have always stayed on the lowest dose by changing chemicals every few years. The Rheumatologist had a strict policy of no triple script meds. Meaning no narcotics that required hand written scripts in triplicate. I understood her issues with triple script narcotics, but I didn't agree with it so I decided to look for a new Rheumatologist. In the midst of this I had had filed a VA claim for my PsA. Since I was already rated as service connected for P it would be common sense that my PsA was a continuation of that. Right? Uh no, since my Rheumatologist had not put my condition as PsA, but Psoriasis with immuno related arthritis the VA decided that I had Osteoarthritis in my shoulder since that was the only place I had listed on my list of most affected joints that had actual arthritic damage at that point. This is the journey that has lead me to my current Rheum. He is awesome. He kept me on Remicade for about another year, tried several other DMARDS which had never even been discussed with me before, switched up my pain meds for 6 months and then switched me back to vicodin once my body had forgotten about it just as I predicted it would, explored naturistic and homeopathic options with me, suggested dietary supplements for me to try, and has been the best dr I have ever been to. It was finally decided that Remicade wasn't helping my joints and it was time to consider other options. My skin was still pretty clear but my joints were not doing well. He supported my decision to try a natural route for a while as I considered my options and hoped for some other meds to come on the market. I was biological and DMARD free for a little over a year. Again hindsight is a bitch and it was probably a mistake. In that year my P and PsA became very aggressive. The decision eventually made to try Humira. I had a glimmer of hope because my big toe, which was covered with P and cracking, was almost completely clear at the end of week 1. Then came the bad. Right before I was to take my 2nd shot I started losing my hair, I developed sores in my mouth so it felt like I was gargling glass, and I started getting hives. Yep you guessed it, stop the Humira. Now we are up to date. I am currently on Simponi. I have been taking it for about 3 months and it is doing zero, zip, nada. Since starting it I have developed Pustular Psoriasis on my feet, my P has been in constant flare, and my joints are no worse or no better. I have a bottle full of Arava I can start taking, and when I spoke to the Dr's office this morning they said my Hepatitis screening was clear so I could start taking it, BUT it was pointed out that I have been gasping. Apparently I have been doing it for a few months. The boyfriend noticed it was pretty bad this weekend and asked how long I had been having "shortness of breath". He said he had noticed it occasionally for a few months, but Friday it had started to get very noticeable and worrying. He wanted to take me to the ER. I of course said "I just need a deep breath every once in awhile! I'm fine! I used to be an athlete, I know what shortness of breath is! This isn't shortness of breath! You're stressing me out (deep gasping breath)" Ok called the Dr this morning and have an appointment on Thursday to see him and get poked prodded x rayed and scanned.