Cimzia day ONE

I'm now 24 hours into starting Cimzia. It was approved for PsA last September. The Nurse Practitioner who is my assigned provider at the Rheumatology clinic at the VA decided it was the only option, but my Dermatologist doesn't feel there's a high likelihood of success with my failures on Remicade, Humira, Enbrel, and Simponi due to Cimzia using the same basis for combating my hyper active immune system. 

So far no major side effects. Some nausea, mild headaches and minor all over joint irritation. I noticed I had some skin irritation on my forehead and temples this evening,  but that could be my monthly cycle even though it's not my typical pms pimple attack location.  So far in comparison to side effects from the other biologicals I've been on I'd say it's a 2 of 10. IF I have joint and skin or even just joint improvement without more side effects developing or worsening I'd say it's totally worth the minor irritation.

One thing to mention is that the script I got is the prefilled syringes. The needle guage is larger than others I've experienced. This means it is harder to puncture the skin and left me with more bruising than I usually experience. Again not a deal breaker, but something to be aware of. 

Overall so far so good. I'll keep you all updated!!

In other news I'm freezing my ass off in TX. My winter psoriasis flare is NOT happy with me.

Prayers and blessings!

Heather

You are what you eat

Last week I wrote a blog about the pharmaceutical options on the market right now for Psoriasis and Psoriatic Arthritis.  Today I want to discuss some of the diet based treatments that people are finding some success with.

One thing to remember both with both pharmaceutical and natural/holistic treatments is there really is no one size fits all approach to Psoriasis or Psoriatic Arthritis.  It can take a lot of trial and error to find what will work for you and your lifestyle.  Also remember you need to discuss with your medical professionals if you want to do drastic changes or diet programs to help control your psoriasis and/or psoriatic arthritis.

Many people find they do have food triggers.  It may be a full out allergy or a sensitivity that is causing your psoriasis especially to be triggered.

There are a few "diets" that are popular in the psoriasis community, but the one I hear the most about is Dr. Pagano's diet.  The Pagano Organization has information about the program and Dr. Pagano's books.  The basis of this approach is that the psoriasis is triggered through imbalance in the intestinal tract (Leaky Gut Syndrome).  It focuses on diet to equalize the intestinal tract and improve elimination of toxins.

Another popular approach is to do an elimination diet.  This is more focused on potential food allergies or sensitivities.  Generally it is suggested that you eliminate processed foods and foods that are common allergies such as dairy, gluten, yeast, and sugar.  It is also suggested that you eliminate foods that are most common in your diet.  If you drink orange juice ever morning for breakfast, remove citrus from your diet for several weeks to see if you have improvement.  A few web sites I have found useful in both following an elimination diet and still enjoying my food are The Whole Life Nutrition Kitchen and 100 Days of Real Food.  Many people find that jump starting this elimination process by getting an allergy test done is helpful.  If you decide to start the elimination process with allergy testing be sure to let your Allergist/Immunologist that you are getting the test done because you have Psoriasis/Psoriatic Arthritis and you are interested in isolating foods that are triggering issues for you.  This will allow your testing specialist to be sure that they are including as wide a range of food allergens as possible.

One last route that has grown in popularity in the diet department is the juice fast.  If you have watched the movie "Fat, Sick, and Nearly Dead" you will be familiar with this approach.  If you haven't click on the title and it will take you to Hulu to watch it for free.  This program is about resetting your immue system through flushing it out while consuming fresh juices.  It allows you to maximize vitamin and mineral intake and give your system a break from breaking down food.  The documentary is about the best way to get information about the program.  It's very informational and entertaining.  There is also a web site that is a companion to the movie that helps with following the plan called Reboot with Joe.  Again you need to be sure you discuss this program with your Doctors so that you are being tracked and having your vitals and blood work checked regularly to make sure you are doing this in a healthy way.

Some food components that are not actually a full diet program are to limit/eliminate nightshades.  These vegetables are believed to cause flares in many people with both Psoriasis and Psoriatic Arthritis.  WHFoods.com has a fairly extensive list of nightshades HERE, and LiveStrong.com discusses issues with nightshades and Psoriasis specifically HERE.  Many people also find eating anti inflammatory foods helpful.  DrWeil.com has an interactive food pyramid of anti inflammatory foods to give you a place to start.  I realize that some of the foods on the nightshades and anti inflammatory food chart are contradictory, and can make the process confusing, but this is an area that trial and error really comes into play.

One last thing to note is that drinking alcohol is generally considered to be bad for Psoriasis and Psoriatic Arthritis.  Not only is it advised to stop drinking alcohol when you are taking many of the medications used to treat both diseases because they are very hard on the liver, but many people find it is a trigger for them.

Finally let me say that not everyone will find that adjustments in their diet will improve their Psoriasis or Psoriatic Arthritis.  I fall into that category.  I have tried all the approaches talked about above and had no improvement in my diseases.  That being said I do believe that living our healthiest life possible is good for us.  Even if I don't avoid particular foods I do limit processed foods and eat whole foods for the majority of my meals.  I also try to eat a very well rounded diet with minimal sugars and red meat and a lot of vegetables and fruit.

Finding your food triggers can take months of trial and error, but you can do it at your own pace.  It doesn't have to be everything at once if you are not comfortable with that level of radical change.  Pick a few foods and start there.  Always be sure to keep your doctors aware of your process so they can support you by monitoring your health and possibly referring you to a Nutritionist to help you with the process.  Don't view this as losing all your favorite food choices.  It's just changing some of them and finding new favorites that don't disagree with your body.

I hope this helps you all find some places to start your search for diet changes that might help your life be better.

A spoonful of sugar helps the medicine go down.

Most of us in our youth sang this song and never imagined that the idea that we might need 5 pound bag of sugar to take all our pills one spoon at a time.  Psoriasis and Psoriatic Arthritis have come a long way in the last 5 to 10 years in respect to pharmaceutical treatments.  We still are a long way from knowing what causes either disease or what actually causes us to be triggered to have them, but we are making strides in the right direction to finding therapies that will give relief.  I get asked a lot of questions about treatments available, and on the message board on online communities about Psoriasis and Psoriatic Arthritis medication questions are probably 60% of the inquiries.

As my life is at a bit of a standstill in respect to my medical treatments I thought I might go through the pharmaceutical options available as of today. I will make a list of links at the bottom for resources as to where I found this information so you can research them further.

Prescription Topical Steroids: These range in strength from class 1 (weakest) to class 7 (strongest). You can find a list of currently used steroids in their class levels HERE.  This is usually the first line of pharmaceutical attempts to treat psoriasis.  These should be used sparingly only on the affected areas of skin.  One of the potential and common side effects of long term use of topical steroids is that the skin in the surrounding area will thin.

Tar treatments:  Many of these treatments can be purchased without a prescription, but some especially for the scalp are prescription strength.  Tar is one of the oldest treatments for Psoriasis.  In prescription strength formulas it is often combined with salicylic acid.  These treatments can be quite effective for many, but they can smell bad and stain clothing and skin.  OTC(over the counter) treatments are fairly readily available in most pharmacies and I've seen several on Amazon.

NSAIDs: Non-Steroidal Anti Inflammatory Drugs. These come in both OTC and prescription.  Generally they are advised regularly for Psoriatic Arthritis patients, but current research shows that general inflammation is predominant in all Psoriatic patients so the prescribing of these may become a common thread for Psoriasis patients. OTC versions of these include aspirin, ibuprofen (Advil and Motrin), and naproxen sodium (Aleve).  Some of these also come in prescription strength.  The National Psoriasis Foundation has a current list of commonly used NSAIDs  HERE.  One thing to keep in mind is that many of these medications can be very hard on the stomach, and can cause liver damage if taken in excess.

DMARDs: Disease Modifying Antirheumatic Drugs. These medicines are usually only looked at if the above treatments are failing or not getting the level of improvement that your Dermatologist or Rheumatologist feels is appropriate.  From reading message boards and talking to other Psoriatic patients it seems that many are jumping straight into the DMARD pool.  This may be because it is  being found in studies that early treatment for Psoriatic Arthritis can be imperative in extending quality of life in patients.  This class of medications includes Methotrexate (MTX), Leflunomide (Arava),  Plaquenil (Hydroxychloroquine), Sulfasalazine and, Ciclosporin. These drugs are used to reduce inflammation and damper the immune system so that it does not continue to attack the body as a foreign invader.

TNF Inhibitors: These drugs are the newest in the arsenal of medications doctors are using to fight Psoriasis and Psoriatic Arthritis.  Enbrel  (Etanercept), Humira  (Adalimumab), and Remicade (Infliximab) are currently approved in the United States for both Psoriasis and Psoriatic Arthritis therapies. Stelara  (Ustekinumab) is only approved for Psoriasis, but is in Phase III studies for approval for Psoriatic Arthritis.  Simponi  (Golimumab) is only approved for Psoriatic Arthritis currently.  These medicines are often used in conjunction with DMARDs, but are generally only approved after use of at least 1 DMARD has failed.  This class of medication is used to inhibit the TNF (Tumor Necrosis Factor).  The TNF is believed to be a primary cause of inflammation in many auto immune diseases.  In patients with Psoriasis it has been found that active skin cells are found to have elevated levels of TNF so these medications are used in patients with only Psoriasis to limit those levels.  These medications also act as immune suppressors.

Narcotic Pain Medications:  These are used frequently especially for Psoriatic Arthritis patients.  Many are a combination of a NSAID and a narcotic element (Vicodin and Norco).  Though Narcotic therapies have gotten a lot of negative press in the recent years because of addiction issues, working with your specialist or a pain management specialist to use these TOOLS to reduce your pain to functioning levels is an option.

I know all this is very overwhelming, especially for someone who is newly diagnosed with either or both of these diseases.  I will do some follow up blogs to give more detailed information on the DMARDs and TNF inhibitors, but I wanted to give some basic information to people who have no idea where to start in their research of treatments available.  These are only the pharmaceutical treatments.  I will discuss homeopathic and naturalistic treatments at another time.

Finally I want to say I am in no way a medical professional.  I am offering this information from my personal experience with both Psoriasis and Psoriatic Arthritis and the research I have done over the years in my journey trying to find relief.  Be sure to discuss your treatment options with your specialist.  Always remember you will always be your strongest (and sometimes only) advocate for your health.  Be informed, be aware, and be assertive!

Links to more info

1. National Psoriasis Foundation
2. Web MD
3. American College of Rheumatology
4. Drugs.com

Why my nails are always painted.

I was trying to describe to my sister what nail beds look like when they have psoriasis.  My thumb picture is a generally healthy nail bed with the pink (nail bed) and white (nail growth) is fairly smooth and straight across the nail. The pinky picture is my worst psoriatic nail. You can see the bed has detached more than halfway down the nail and the line between nail bed and nail growth is  very jagged and uneven.

Sometimes I think I'm losing my mind.

I'm sitting here watching movies, knowing it's going to be an insomnia night.  We had some snow here in North Texas yesterday so I'm quite happy to be snuggled up in the blankets my sister made me last Christmas watching old movies on cable.

Something I noticed the last few days is that I keep feeling like my elbow is wet.  I'm constantly checking to see if I've got a gushing crack in my elephant elbows.  So far it just looks like I've been exfoliating with a cheese grater.  I think I'm probably developing some nerve damage in the dermis from the deep cracking I've been having.  I will be really glad when I can actually get in to see a Dermatologist.  I've run through all my options for Psoriatic Arthritis as far as DMARDS and Biologicals go.  I'm now left with the slim possibility of getting Stelera through the Dermatologist.  It is having success in Phase III medical trials for Psoriatic Arthritis so hopefully it will actually help both my skin and my arthritis.  I'm off to the VA next week to get that whole process started so wish me luck!

I really could use some retail therapy, but I just can't afford it and window shopping is downright depressing. I will however go try my luck this week at playing in a World Series of Poker tourney.  A friend of mine won a WSOP ring and a boat load of money yesterday so now I'm inspired to take my chance on one of the smaller tourneys.  Again I need your luck!

Well I'm off to watch more hokey 90's movies and wait for sleep to decide to visit me.  Have a great week!

As soon as I finished writing this blog I realized I actually was bleeding from a psoriasis crack.  Just not from my elbow.  UGH!

Home sweet home.

We have been home for a few days, but honestly I really just wanted to veg after 16 hours in the car.  I'm really glad I only have 1 more trek like that to make and it will be moving to Phoenix.

I have a few products to endorse today!  First is a cream my daughter brought me to try from Lush.  It is called Dream Cream.  It is non greasy, smells good/not foo foo girly, and is SO soothing on my psoriasis.

Dream Cream

On the non psoriasis/psoriatic arthritis front I have decided I LOVE Trader Joe's Chicken Cilantro Mini Wontons.  They are the OM NOM NOM NOM! The green tea mints are also pretty darn great, and gluten free too!

Trader Joe's Chicken Cilantro Mini Wontons

I received a sample tube of Noxicare pain cream in the mail today so I'll be trying that this week and let you all know how it works for me.

Have a great week!!!

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.

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. 

OH MY GOSH I LOVE CABLE!

I've been offline a few days because I was in between Internet providers.  I could have blogged from my "smart" phone, but arthritic fingers and touch screen typing on a more than twitter length entry is just NOT going to happen.

I had my appointment to get Internet AND cable with Time Warner Cable.  Let me just say that I remember why I left them.  My appointment was 8-12.  It seems that the cable company can't commit to a tighter time frame than 4 hour chunks of time.  As it turns out they can't even keep that commitment.  A bit after noon I got the call that there had been a vehicle breakdown, and my technician would be by before 1.  Around 1:30 I was getting REALLY irritable.  A storm was coming in so in addition to my generally impatient self I was having steadily building pain and swelling.  I called customer service to find out where exactly was this tech and when exactly would he be arriving at my home for my 8-12 appointment.  I was told he would be there by 2.  The tech pinkie promised it would be so.  At 2:49 the knock FINALLY came.  He didn't have the right modem, and I misunderstood the channels I was getting.  The tech "didn't have time" to upgrade my channels, but he happened to have the right modem in his truck.  Needless to say I was still a very angry, in pain cranky pants.  I did some errands and cooled off a bit.  I decided since I had experienced 2 of Time Warner's forms of service and been astounded at the level of crap it still was I would try the third.  Internet chat customer service.  I'm pretty sure the first person I chatted with was in India.  She wasn't bad, but pretty minimally basic in her responses and the typical typographical errors you see in people who are not native English speakers.  She decided to send me up a level.  The next person I spoke to was AMAZING!  She restored my faith in humanity.  In 20 minutes she had me upgraded to the right stations, threw in a year of Showtime for free and said she would forward my complaints to the local offices responsible for my issues today.  Do I really believe she'll forward my complaints? no.  Am I watching free Showtime right now and never leaving my couch ever again? yes!  I didn't even have to pull out the service connected disabled girl card!

Now on to psoriasis stuff.  I took my last shot of Simponi on Thursday.  I see no improvement anywhere.  My hands itch like crazy and are cracking again.  SO attractive.  My feet have gotten more pustular spots, but luckily the majority aren't rupturing.  They burn and itch, but the danger of infection probably isn't worse than usual with the regular plaque psoriasis I always have on my toes.  I've found if I waddle on the outside edge of my feet it doesn't put as much pressure on the actual pustules   Of course my ankles are not happy with that, but I told them to shut up and suck it up for the team.  The Dr prescribed me Arava, and once I get the results of my Hepatitis screening I'll give that a try.  I'm a bit scared of it so this is why I am using my hep screen as an excuse to wait to try it.  I should be started by midweek and will be sure to give you all the side effect breakdown as it happens.

I think that gets us up to date after my little forced hiatus.  I'm off to go watch some more Showtime and read up on Pintester so as I look for things on Pinterest to entertain me while I'm on medical leave, I don't do the disastrous   The Pintester "fucks up pins so I don't have to" and I will be eternally grateful I didn't try the strawberries & cream mug cake. See her facial expression below.

Ch Ch Ch Changes....

Here we are at Sunday.  Another weekend gone by in the blink of an eye.  I've spent a lot of time thinking this weekend though of the fact that going on disability is likely to becoming a reality soon rather than a someday eventuality.  For 2 weeks now my arthritis has been out of control, my psoriasis is worse than ever (including a really bad flare on the bottoms of my feet which I've NEVER had before), and besides being sick for a week from TDAP my energy level is in the pits.  I only worked about half time last week, and I feel SO guilty on those days even though I am not getting paid for the time I'm not there with FMLA.  Until my arthritis really started effecting my energy level and my pain was becoming limiting about 5 years ago I was working 60+ hours a week.  Previous to that job I was working multiple jobs both paying and volunteer so the idea of working 20 hours a week and being exhausted is just down right embarrassing.

So I am working on coming to terms with that.  I spent a lot of time talking with my oldest daughter about it. She is the muse I used to be when I was younger.  Full of realistic ideas and optimism.  She helped me see that this will be a better life for me.  I am really cheap so the monetary change will take some adjustment, but won't be devastating.  If anything it will be that challenge that may keep me sane.  I quit smoking mostly because it is my largest discretionary spending I have.  I really don't drink, I don't do illegal drugs, I don't shop much without a lot of lists, planning, and thinking.  I smoke my cigarettes.  I like my cigarettes.  Cigarettes are $200+ of my budget that I can get rid of.  Today is my first day cigarette free.  With the help of Chantix I am doing pretty good.  Yes, I am thinking about them occasionally, but I haven't gone searching for butts or done an emergency run to the smoke shop for a cigar to get me through without buying a full pack.  I have quit using Chantix before and it worked awesome.  After a week of not smoking, even being around people that smoke didn't bother me.  I didn't miss them.  I just have to accept that I am always going to be a smoker, and in order to be smoke free I can not touch cigarettes EVER.

So hopefully this week will be OK.  I see Dr Lavery on Wednesday, and we'll have the disability talk.  Maybe I can just limit it till the end of the year for at first and hope that the Simponi will kick in at some point between now and then.

Wish me luck on the quitting smoking!

Inspire me!

So I found another Psoriasis and PA group that I have been enjoying reading the last few days.  Inspire.com has many health/disease related boards and a place I'd recommend to check out.

Even reading the posts on this web site it occurred to me just how much misinformation and lack of information is out there.  Granted this being an autoimmune disorder it can be extremely hard to pin down a diagnosis let alone find a workable treatment, but some things I have read just today have been total malarkey.  It saddens me that people will spout uninformed and uneducated things as the end all fact.  That being said I understand that each body is different so each person has their own chemistry to find the antidote or measure of relief for.  On the other side of that coin is the amazing community and support that is available.  So many people who are sympathetic to each other.  I saw one poster who had been diagnosed with PA 30+ years ago giving tips and advice to someone who had recently been diagnosed. That is truly inspirational if you ask me.

I don't really have a topic to discuss tonight, but I did want to share the web site.  Even if you have a illness that is not PA or psoriasis check it out.  There is a plethora of afflictions there.  Also Hello to the 30 or so inspire.com readers who came over to check me out.  I was a bit shocked to see my stats today and find they all came from there.

Back to reality.

So now I'm back to DFW, and back to work today.  Oh JOY!  My joints felt SO great while I was in Phoenix.  Now they are quickly returning to pre vacation swelling and pain.  It was nice while it lasted.

Today I thought I would talk about road trips.  I love my time on the road.  It's my place that I can go and go and go, and my arthritis might slow me down, but it doesn't stop me.  I'm not a big planner when it comes to these trips beyond a fuzzy time frame for leaving point a.  I've found 4 routes for DFW to Phoenix, and I don't decide till I'm on the road what way I'll go.

Here are my "rules" for road trips.

1. Eat well!  I make healthy finger foods for eating while I drive for the trip to Phoenix.  On my way there I'm in a hurry to get there so stops are limited to gas and restroom breaks.  No time to dawdle.  I stick to fruits, vegetables, both fresh and dried, lunch meat rolls (lunch meat, cheese, veggies rolled up like a burrito), salads with lots of cheese and nuts for protein.  I keep some chocolate for those moments when I'm feeling a little run down, and lots and lots of water and diet coke.  When you have an immuno issue you don't want to allow your body to go wonky because you aren't feeding it.  Make it a priority either with food you bring or with the stops you make.

2.Be safe.  I travel by myself a lot.  In fact the last 4 trips I've taken have been solo.  Previous trip have been with my daughters, so even more reason to be aware and safe.  Always stop in well lit places with people around.  Be aware on what is around you, who is noticing you, and who/what looks out of place.  If possible get gas on your credit card or cash, and pay inside.  Protect your credit/money/identity because you have to come off vacation some time.  You don't want to get half way to your destination and find out Olga in the Ukraine has drained your account buying cotton candy off the Internet.

3. Have fun.  I've made this trip so many times that I find new things to entertain myself.  I'm a huge car karaoke singer.  I'm usually nearly horse by the time I get to my destination.  I also find myself seeing how many rocks and clouds look like peni (or is it penises?)  There are a LOT of penis rocks in the East Texas desert.

4. Hydrate and moisturize.  This goes along with the eating healthy and the one I always have trouble keeping up with.  My diet coke is my addiction.  Water is often an afterthought, but it is very important to stay hydrated.  Moisturizing, especially when you have skin conditions like psoriasis, is equally important.  Another forgettable thing while I'm belting out Kelly Clarkson, but if I don't my skin is a cracked, bleeding mess.  The skin is the largest organ of the body, and 20+ hours in the ac of the car makes that organ scream for relief.

There you have my tips for a enjoyable road trip with chronic illness.  The road is a great because it's so adaptable.  Bring a friend who sings just as badly as you do (not possible in my case) and have a blast!

Day 2

It's been a little over 48 hours since I took my first shot of Simponi.  I'm still pretty fatigued, but the nausea and dizziness are better.  I'm having a mild flare, but that very well could be from storms in the region yet again.  The big thing I've noticed today is I itch!  This isn't necessarily an unusual thing with as bad as my skin has been in the last few weeks.  The new thing is that it's like I'm sloughing off all the scales and underneath is new pink skin WITHOUT scales.  This is pretty gross, but I'm having large scales of psoriatic skin literally peeling off.  I feel a bit like a lizard that is molting.  I have a few deep cracks on my hands that will take more time to heal, but the areas that were just scales 2 days ago are looking more pink skin and less scales.  It seems ridiculous that my psoriasis could experience such dramatic change in such a short time, but this is what I am seeing.  The spots that were scaly look a bit like I have scarring from a burn.  Hopefully by tomorrow my dizziness will subside enough that I will feel comfortable driving.  I had my daughter drive me to the grocery store today.  I am thankful she was able to do that for me, but I'm pretty sure her playing speed racer around corners cut at least a few hours off my life.

Not much more to report today.  If my side effects remain mild and I continue seeing improvement in my skin (and hopefully my joints soon) I think Simponi may be my miracle drug for now.  There is a possibility that after a few months the nausea and dizziness will lesson quite a bit as my body gets used to the medication and quits fighting it so much.  I think I can see light at the end of the tunnel!!!

On a side note I made Creamy Bacon Carbonara for dinner tonight.  It was OMG good!  If you are looking for a great pasta dish with all natural ingredients this is your dish.  We added some shrimp to it, but otherwise made it exactly as written on the recipe.  I wish I had taken a picture of it before we devoured it.  It will be a make again meal for sure!

That's what friends are for.

Last night was Vagina night.  The girls gathered as we usually do on the usual patio and enjoyed our weekly visit.  I asked about my blog.  I knew at least one of the ladies has been reading it, but I was curious how I was doing, and getting perspective from people who know me well enough to know I don't want smoke blown up my ass.  I wanted an honest opinion.  They gave me some good input and I was pleased to hear that the overall impression was good.  During this conversation things turned a bit with one friend.  She said that she felt that I wasn't a good friend because I didn't share my feelings about my pain and the struggles I go through every day with them every week when I go to Vagina night.  She felt that I was holding out and therefore didn't value the friendships we all had enough to share these things.  Now I am saying how I interpreted what she said, but that is the condensed version of what was said.

We all have at least one friend that only calls on us when they need something, or is always negative.  That friend that we wonder why we are friends with them at times.  Who wants to be the sounding board for constant negativity or the constant support system?  Yes friends are there to help us, to listen to us, to support us, to be there in the good and bad times, but when there isn't a balance it devalues the friendship (in my opinion).  I do not want to be that friend.  Yes I have issues. Who doesn't?  I do share things when I'm having a particularly rough time with my children, work, boyfriend, or something unusual in my life.  Generally, however, I am a pretty private person.  I have maybe 3 people in my life that I share almost everything with.  1 is my sister and 1 is my boyfriend, otherwise I'm not a open person about things I feel are close to my heart.  That being said I don't even talk about my pain issues all that much with my sister or boyfriend. 

I guess this comment really got under my skin.  I don't think it was said in a cruel or attacking way, but it was said in a way that my friend was hurt that I didn't "trust" her enough to share constant pain with the group and her during our weekly venting sessions.  I guess the reason I decided to actually bring this up was to try to explain what I choose to keep to myself and why.  I have thought about it almost constantly since last night.  It literally kept me awake thinking about it.  I value my friends more than they will probably ever realize, and that my lack of sharing is taken personally in a hurtful way disturbs me.  Probably mostly because my introverted private ways aren't going to change.

I have other friends with chronic illnesses and yes we occasionally have a sharing session about these illnesses, but I think most of them would agree that having that illness be a regular topic of discussion is just not desirable.  We deal with these issues 24/7/365.  When we venture out on a good day we want to escape that. We don't want to whine about it (usually), we don't want to dwell on it, we don't want to give educational seminars on it.  We want to enjoy a night away from it. 

I think part of the reason I decided to do this blog, beyond camaraderie with other PA patients, was to let people have a glimpse in terms they can understand into what someone lives with when they have a chronic illness.  It is hard to empathize when you have no point of reference or personal similarity.  So yes when I am out or with my closest friends I am not sharing my day to day challenges, but I hope that you will read this and be able to understand why I don't want to talk about it all the time.

To my friend, I'm sorry that you have been hurt by my lack of openness over the years.  It is not a reflection on how I feel about you, our friendship, or my level of trust in you.  You have been a great friend to me, and I enjoy our friendship.  I promise that if a day comes that I truly need your help I will call you.  I promise if there is something in my life that I need to talk about I will share it with you.  I will however continue to be a private person.  I will continue to be as positive as I can be.  I will continue to not dwell on the negatives of psoriasis, psoriatic arthritis, and pain the majority of the time.  This is how I am able to function and live the best life I can.  This is how I keep my sanity.

Thank you for being my friend.  You and all the other Vagina ladies are my rocks even if you don't realize it.  I love you guys!

I got a new drug.

So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy.  I will be taking it tomorrow so fingers crossed!  I also got my FMLA approved.  Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences.  80% of something will always be better than 0% of nothing, right?  Also if I'm making 20% less  my kids might actually qualify for some federal student aid.  LET'S GO PELL GRANT! 

This week has been a pretty moderate pain week thankfully.  I haven't needed a vicodin since Monday.  Now this isn't to say that I'm not in pain.  It just means my pain levels are manageable without narcotics for now.  Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain.  I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free.  People in my life will frequently ask me if I'm in pain.  If I answer honestly my answer would always be yes.  What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain.  It's still pain, but you don't really register it anymore unless you focus on it.  It's like if you work in a building that has a piece of machinery with a constant hum.  Do you hear it?  Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore.  This is part of the reason that having mental coping mechanisms can be so important.  It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time.  It can become all consuming.  It can drive you to being mentally ill on top of physically ill.  It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.

As I've said  before reading is one of my coping activities.  I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga.  Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward.  Anyway,  know your comfort positions.  Mine change over time and depend on the particular joints having a bad day.  When it was just my hips I would sit kind of Indian style and then lay back.  This stretched out my hip flexors and forced my back into a more comfortable arch.  I could sit like that and day dream for a good hour at a time.  Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable.  Laugh.  This one is a universal mood enhancer.  I'm blessed with the ability to find humor in the not humorous.  Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor.  Maybe my arthritis is the reason.  No matter what's going on I can usually find something humorous and inappropriate to say or think.

So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell.  I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.

Mary Jane

Tonight I went to play poker with my honey for his birthday.   The usual suspects were all in attendance.  I ran into my RA friend, and we had a brief discussion about medical marijuana.  It was not a detailed talk or debate, but really just about whether it was available in Arizona where we both plan on residing in the not to distant future because the climate is favorable for our arthritic conditions.

This got me to thinking about the benefits/side effects of marijuana on PA specifically.  I fired up the computer as soon as I got home and got to reading.  I won't say I have never smoked marijuana, but it has been some time since I have.  I am not against it.  In fact I feel that it's probably less damaging than alcohol and cigarettes which are legal.  I haven't experimented with it's effects on my PA because it is not legally available in Texas and I can't afford to lose my job due to the legal issues of using it for pain relief.

So here is  what I found in a brief search.  MJ is believed to have  immune-modulation and anti-inflammatory properties.  So not only assisting in pain relief, but may actually act as a immuno inhibitor and reduce painful inflammation.  Studies are limited, but Chinese medicine has used MJ as a rheumatism cure for centuries.  Studies done in states where medical MJ has been legalized it has been proven to improve mobility and reduce morning stiffness.  Some info on these facts is available at Americans for safe access.  A study done in 2005 states that a medication formulated with plant extracts of MJ taken in the form of  a mouth spray actually blocked progression of RA and increased quality of life in study participants.  More info on this study can be found here.

I realize that studies are limited at this point due to the legality of MJ in most places.  This is the info I was able to find in a brief google search over the last couple hours.  I'll probably do a follow up blog at a later date when I've had time to delve a little deeper into the big bad world of weed.  In the meantime it's something to think about and research on your own if it's an option for you. A list of current states with medical MJ can be found at ProCon.org .  This link has a chart of states, when it was legalized, and some of the stipulations involved in the laws for that state.

Return of the elephant elbows.

Yes the scales are coming back with a vengeance.  From the one shot of Humira my psoriasis had improved quite a bit.  It was still visible in all the normal places, but it wasn't cracking, itchy, and flaking.  My elbows, knees, hands and feet have started cracking and everything itches like crazy!

I've tried just about every lotion, cream, voodoo magic, holistic cure, and quackabarrel concoction out there to get relief from the constant yuk.  One of the most frustrating things about psoriasis is above and beyond the actual discomfort is the lack of a cure all.  It seems that no one thing is universally applicable for everyone.

That being said, here are some things that have worked for me and a few people who I know who also have psoriasis.

Occlusion:  This is the process of moisturizing or medicating the affected area and covering it.  I have used this method on my hands and feet, and have found it to provide some comfort.  A friend of mine can't say enough great things about this method.  Basically you apply the lotion/medication, cover the area with a warm cloth, and then wrap in saran wrap.  One note on this method especially relating to topical medications, you should discuss this with your Dr.  Some steroids are not safe to apply with this method and can actually cause severe rashes.  I have done this with nut butter when my skin gets especially raw and it does provide comfort for a day or two.

Soaking in oil:  I use a combo of olive or coconut oil, sea salt, and honey in a hot bath.  I generally soak for about 20 minutes in this combo, and then use a loofah mitt to exfoliate.  Remember that exfoliating can actually increase the production of psoriasis, but an occasional scrub can give you immediate relief.

Dry brushing:  Basically this is using a brush (natural fiber brush is recommended) to slough off the skin.  You do this when your skin is dry (hence dry brushing).  There is a lot of information on this technique here...Natural Health Techniques, Dry Brushing ... It even claims that it reduces cellulite, SCORE!

Tanning:  I know that the sun has become public enemy #1 because of skin cancer.  I won't even talk about the evils of fake n baking.  However exposure to UV is known to help psoriasis.  One of my dermatologists suggested I spend at least 20 minutes in the sun every day and to expose as much affected area as possible.  As much as I love being naked my neighbors don't appreciate my nakedness in the name of treating my psoriasis.  My Dr said at that point that tanning for 10-15 minutes a few times a week would be a acceptable substitute.

These are just a few that I personally have tried with some success.  I'm pretty sure I will soon be naked sunbathing, then dry brushing my whole body, followed by a soak in a sweet smelling oil bath, then slathering head to toe with Brazil nut butter and wrapping myself like a freaky mummy in saran wrap for the night.

No, there will not be any pictures of me wrapped in saran wrap head to toe.

And so roller coaster ride begins

Tomorrow is my day to take my second Humira shot.  I noticed this morning that my big toe miracle is becoming less miraculous.  There is a patch of psoriasis redeveloping.  My toe was so pretty for a few days there.  The psoriasis in other areas that were improving have started getting worse again as well.  I have started noticing some of those fun side effects as well.  My hair is falling out.  I have been blessed with really thick hair, but it is still disturbing to pull out hand fulls of hair when I washed my hair this morning.  I also feel like I have been eating glass.  My mouth feels raw, similar to having eaten pizza when it's too hot, but all over my gums, tongue, and the flesh inside my mouth.  Luckily it's not ugly cold sores though.  I have a few spots that feel like blisters in my mouth, but I can't see them.  Then there's the insomnia.  Being a long time insomniac it's hard to say if this particular rearing of the ugly head of sleeplessness is a side effect of the meds or just the occasional bout that I have every few months.  It's hard to overlook the timing though.  It also seems like I have to pee a lot.  When I finally do fall asleep I feel like I'm up every hour for a trip to the throne.  I have diabetes in my family so when I first started noticing the frequent urge to pee I went to get my blood sugar tested and it was A OK so it's not likely I've developed the family curse, at least not yet. On top of all that I haven't noticed any improvement in my joint pain.  If anything it's worse.  That in itself isn't unexpected.  All the other immuno suppressors have caused me a flare after I started them.  Remicade made me flare every time I got an infusion the whole 5 years I was on it.  It is just pretty hard to see the light at the end of the tunnel when the great miracle is fading and I am in constant pain.

Oh the fun roller coaster of drug side effects.  I'll be calling the Rheumatologist tomorrow to see if I should take my shot or hold off.  I will be pretty pissed if I can't use the $2500 worth of medicine that is residing in my fridge.  Plus I'll be pretty irritable that I've been abstaining from my Jack Daniels and Diet Coke enjoyment for over a month now.  After not drinking for the better part of 5 years besides on special occasions I've come to enjoy my adult beverages a few times a week, and I kind of miss the whole experience of it.  Even a glass of wine at dinner would nice, but to give this medication a fair shake and not take any chances of causing more damage to my liver I've abstained since I decided to give Humira a try.

OK I think I'm done with my little pity party for now.  Today's positive note is that Wednesdays is vagina night!  I got to spend the evening with my closest girlfriends.  I missed last week thanks to the attack of the file moving episode.  I have some amazing friends.  The core group of 5 of us span 2 decades in age, but share 8+ years of companionship, ups downs, fun, sadness, and have made a commitment to spend time together almost every week.  So happy Vagina night!  If you have a vagina I hope you are blessed with other special vaginas to share your life with.  Nothing compares to good girlfriends except for maybe good girlfriends drinking wine.

This will not be my Kryptonite!

Since today was a rather busy day for me at work I am pretty pooped, and don't really have anything amusing or personally PA related to share.  I thought for today I would share some of my own tips, tricks, motivators, and crutches that get me through the days, weeks, month, years.  Because this disease is so individualized I realize that there are no universally applicable tricks, but maybe something will give you a new method to try.

One place on the net that I have found inspirational and informative is the "But You Don't Look Sick" web site and the Spoon Theory.  This place is a gold mine of greatness not specifically for PA sufferers, but anyone who has an illness that is "invisible" from the physical and mental plethora of diagnosis.  The message boards are a great place to find support and information or just to vent on a bad day.  Even if that bad day has nothing to do with your illness.

Find a brain activity that you love.  Mine is reading.  I can read for days.  In fact I can forget to shower and eat because I have gotten so engrossed in a book.  One of the problems I have found with chronic pain is the sensory overload that is caused from constant activity of my nerves responding to pain.  Reading doesn't stop pain, but it does distract me from it to some degree.  I sympathize with the problem of pain being so distracting that you can't focus, but I started small.  I committed to reading an hour a day.  No matter how much pain I was in or how distracted I was because of it I would get through that hour.  Now once I get started I can usually zone out some of the pain because I am focused on the book. This works for me versus say watching TV because I have to be actively mentally involved.  It doesn't end up being white noise (like TV) that I space out through or pretty much ignore because I am focused on my pain.

Find a "beauty routine" that makes you feel pretty/handsome.  For me it's giving myself a manicure/pedicure.  I might feel like my skin is gross on any given day, but my nails are fantastic!  Before my skin got really bad I went to the salon for a manicure and they said my nails looked like acrylics.  I spend a lot of time on my nails in the scope of all my other beauty "routines".  I am one of those girls that can be up, showered, dressed and out the door in less than 20 minutes.  I do look forward to my me time with my nail polish.  Sometimes I really splurge and have a good long soak in the tub before my mani/ pedi.  At any rate, I get a lot of compliments on my finger and toe nails despite the scales.  The added bonus is that it covers up the ridges and psoriasis I have under my nails as well.

Comfort foods!  Many people have food triggers for their psoriasis.  I am fortunate that I don't seem to have any.  It is just bad all the time.  Sometimes the most basic comforts are the greatest thing ever.  Whether it's mashed taters or ice cream if it gives you comfort it can't be a bad thing in moderation. 

Be your own health advocate.  This is one thing it took me a while to figure out.  So many Dr's have told me how my body is supposed to be behaving or reacting.  I've been in this body for 40 years and I know what is not "normal".  Be aware of what therapies are out there.  If your Dr isn't interested in allowing you to try new, holistic, or different treatments, or stop, start or change medications because they know what's best for you and your body, it may be time to find a new Dr.  I'm not discounting any Dr's expertise.  We pay them the big bucks because they are the experts, but YOU are the expert on your body.

Allow yourself to have a bad day.  I hate to fixate on how PA affects my life, but some days it's good to just let it all out.  When I had cable I'd spend a day watching Lifetime movies and Reality TV shows.  The lifetime movies allowed me to cry.  I am not a cryer, but put on one of those movies and the flood gates open.  The reality TV lets me see that my life isn't the worst train wreck going.  I might be scaly, sore and irritable, but I'm not on Jersey shore.  I also have a venting friend.  She has pain issues as well so we let each other complain with no holds barred.

Finally find your joy.  We all have something that no matter what happens in life there is something that universally brings us a level of happiness.  Whether it's your family, your pet, the color purple, or a special place in your youth, find something that you can think about that brings you peace and happiness.  Multiple things are even better!  When your having a bad day have that picture of your favorite beach you found shells on as a child and remember how much you loved that.  Don't think about the future, your pain, your frustration or anything else.  Think about joy.

I am sure there are many others, but these are a few things that work for me.  What are yours?

Just left of "normal".

I received a call from the specialty pharmacy that sends Humira to me.  They were checking in to see how I was progressing since I started taking Humira.  This was before the miracle big toe discovery, and at that point I really had nothing to report so they went through a series of questions.  How does my arthritis effect my daily schedule?  Does it limit dressing such as tying shoes, buttoning buttons?   This series of questions made me realize that even though I have made alterations to my life to accommodate my condition, I sometimes don't realize how much.  Some things are small changes.  They become ingrained into your daily life so much that they don't seem like accommodations as much as just the way it is.  Until someone actually points it out to you, you forget that anything was ever different.

One example is buttons.  Does my arthritis affect my ability to put clothing on because I can't button buttons?  Well actually no.  Not because I can always button buttons, because I can't.  It doesn't affect my life because I just don't do buttons anymore.  I have maybe 2 shirts in my closet that have buttons and they've been hanging untouched for about 2 years.  I buy my jeans a size too big so I don't have to deal with the button, I can just pull them up already buttoned and zipped.

This got me to thinking about how many things I've adapted in my life to accommodate my growing limitations.  I still cook and I love to cook, but I don't do any fine chopping or cutting anymore.  I don't hand whip and mix anything anymore.  I have bought a stand mixer and 2 sizes of food processors to do these things now.  Yes I realize these are appliances that many people without limitations own, but my whole purpose in purchasing them was because I needed them to continue doing something I love.  I almost always wear flip flops, sandals, or slip on shoes.  Not because I live in Texas and it's required shoe attire, but because tying shoes is nearly impossible on days my hands are swollen and stiff.    There are a lot of days when I just can't get my feet into shoes, but shoes I can slide on and off are doable for times I have to go somewhere.  Every purchase that has to do with daily living has some adjustment for my condition.  I switched from a manual transmission car I loved to an automatic. I bought a bed that is high enough that I can ease down onto my feet in the morning and isn't too high so I can sit on it without effort.  I also have learned not to be quite so OCD.  If don't have to vacuum and dust every Tuesday,  I don't need to scrub the grout on the shower every third Saturday.  I do these things when my body feels up to it, and that is OK. 

All these things are just part of my life.  I don't think about them anymore.  It's usually unconscious decisions because this is how my life is.  I once had someone ask me how I could be OK with how much my life has changed especially over the last few years.  My answer after some thinking on it was that we all have something a little left of normal.  We all make adaptions in our life for that.  We don't stop living. We adjust, adapt and overcome.  We celebrate life for it's blessings and joys, and try to not let the bad moments be the only thing we dwell on.  Life goes on and so do we.