Fatigue

When I was diagnosed with psoriatic arthritis, it answered a lot of questions for me. Along with the psoriasis, the comorbidities certainly follow along with many of my health issues. While PsA shares a lot of the same symptoms as other forms of arthritis, one thing is more prevalent with PsA, and that's fatigue. Which I have...

I've suffered from different amounts of fatigue practically my entire life. My sleep habits have always been erratic...I never wanted to go to sleep and once I was sleeping, I never wanted to get up. This didn't work well when I was in school, or after having kids. So, fatigue was my constant companion.

It seems as if I 'do' resolutions several times a year. I vow to myself to get on the 'right' track and get better sleep/better nutrition/better exercise, etc. Once again, a few weeks ago I made my vow. While my nutrition didn't get THAT much better, I actually started to be a lot more active. I got my 'active minutes' done and got my 'daily steps' in for a couple of weeks. (Fitbit users will understand...😀) It felt good to have that accomplishment under my belt, but I found out that my knee joint wasn't too happy with me pushing things too far and too fast. It got to the point where I couldn't 'push through' the pain and I had to back things down. DAMN!!! Even my scheduled Cosentyx injection and the CBD oil weren't making things better, so I had to slow down the activity a lot. And I think I regressed...

For the past two weeks I have slowed down to a crawl, in terms of my activities. I do what I have to do, go where I have to go, and move from one room to the next, and that's about it. And the fatigue has set in with a vengeance. This past week, I have slept almost as much as I have been awake...and I still don't have trouble falling asleep when I get comfortable. UGH!

So, what has all of this done for me? Well, for one thing, most of the time I feel as if I'm in a sleep fog...my brain feels heavy, my eyes burn and don't 'feel right,' and my body is achier than usual. Fun times. I'm thinking I'm having a flare and this episode of extreme fatigue will pass, as has happened at other times. I have to believe.

Having health issues is one thing when you have someone with you at all times, but when you are alone, it can be very scary. I'm doing okay here by myself, but only because the house is on one level. I go into the basement when I need to and no more often than that. I had so many plans for the basement, but at this point, they are being put on hold. I wanted to put a sauna down there and set up a craft/sewing room and set up an exercise room, but that isn't happening any time soon. It's enough that my long-term pantry is down there and that the overflow from my kitchen cabinets is there...that is why I have to go down those steps as often as I do. But, I don't go down there voluntarily, as often I thought I was going to. And as the saying goes, "Life is what happens while you're busy making other plans." And life goes on...

Enbrel and the Shingles Vaccine

In early 2009, I finally decided to try Enbrel for my psoriasis.  This was not an easy decision for me and it wasn't a quick one, either.  I spent weeks, months, and even years coming to the decision to do this--and I didn't start without a great deal of anxiety.  But, my skin was getting to the point where I couldn't handle it anymore, so I thought I would try.  I chose Enbrel because of the fact that I could use a self-injecting SureClick syringe.  There is no way I can imagine EVER getting a regular syringe even close to my body, much less CONSCIOUSLY deciding to inject a needle in to myself!  Surprisingly, I have had little to no problems with doing the injections.

My skin cleared up remarkably well using Enbrel.  I came very close to being completely clear after a year on the medication and continued to stay clear-ish for two years.  And I praise whoever came up with this medication--it made my life SO much better.  I am one of the lucky ones, though, as we have very good insurance and don't have to pay big money out-of-pocket.  This is one of the only reasons why I am able to continue to use this very expensive medication.

A year or so after beginning Enbrel, my best friend got shingles.  She continued--and still does, to a certain extent--to suffer side effects for quite some time.  Finally, the medical community decided that the shingles vaccine should be given to younger people and The Husband and I became eligible for this.  With K's kidney problems, it was highly recommended that he get the vaccine and my friend BEGGED me to get it, also.  I do know that it is not a good thing to come down with shingles while using Enbrel, so I decided to go through with it.  And this is where my life became 'interesting,' to say the least.

I did know that someone using Enbrel cannot get a live-virus vaccine, of which the shingles vaccine is.  What I did not know, is how long does a person need to be off of Enbrel before getting the vaccine and  how long do you have to stay off before going back on Enbrel.  I called my dermatologists office and they had NO answer for me, but said they would see if they could find one.  I went on the internet and got no answers.  I even called the manufacturer and had no luck.  My specialty pharmacy was a little better, as they had some anecdotal stories, but nothing more than that.  After a LOT of research, phone calls, and 'gut-feelings,' I decided--with some reluctance on the part of physicians--that four weeks off before and four weeks off after the vaccine was sufficient.  My primary care physician has NEVER been happy with me being on Enbrel, but she reluctantly agreed--as long as I understood the risks.  So, after being off of Enbrel for FIVE weeks, I went and got my shingles vaccine.  I stayed off of the med for another four weeks before I went back on and had NO side effects or any other detrimental effect from any of this.

As of today, I am one+ years removed from having the shingles vaccine and continue to do well.  I have been on Enbrel for almost four years and still have reasonable results in terms of clear skin.  The Enbrel does seem to be a bit less effective today than it was during the first couple of years I was on it, so I don't know what will happen in the long-term.  I am seeing my first new lesions in almost four years and what never went away are slowly growing in size.  I think I may need to change meds at some point in the future, but that remains to be seen.

So, for anyone on Enbrel trying to make the decision as to whether or not to get the shingles vaccine, I have only one thing to say:  it worked for me.  The time frame of being off of Enbrel for five weeks before getting the vaccine and staying off for another four weeks before going back on, was within all of the few guidelines I was able to find.  (While doing all of my research, I found out the half-life of Enbrel and calculated how long it takes to leave your body.  After five weeks there should be so little left that it is as if you are almost Enbrel-free.  So, I felt pretty safe.)  Some people feel as if the longer you stay off of Enbrel on either side of the vaccine, the better, but there IS being TOO conservative, also.  As long as one goes into this with eyes wide open and all of the facts available, I don't feel as if this is something that can't be done.  Getting shingles is NO walk in the park--whether you are or are not on Enbrel--but it is potentially life-threatening while using Enbrel, so that needs to be considered.  I hope this helps in making the decision.


***For all of my posts regarding my psoriasis, search for 'psoriasis' up there ^ to the left.

Day Five--Lotion

First thought, of course, is "it rubs the lotion on its skin..." from 'Silence of the Lambs.'  But, I'm not going to be that obvious.  :)

All of the years that I have had psoriasis has led me to use hundreds of different skin lotions.  There have been times when I have had two dozen different ones in the house at any given time.  And my conclusion?  None of them have been over-the-top great.

One thing that I had to do because of my sensitive skin is look for products with little/no scent OR natural 'essential' oils in them.  It isn't all that easy--or it wasn't--to find products on the shelf (and I'm talking at Walmart, etc) that had no scent.  Of course, it was next to impossible to find anything with only essential oils until I discovered Lush.  The internet kept me supplied with my lotions for many, many years.  Since being on Enbrel, however, I find myself able to expand what I use a bit more than I used to AND it is a bit easier to find non-scented stuff in stores these days.  I still wonder what we ever did without the internet!

Playing The Waiting Game

I am not a patient person--never have been.  Waiting makes me testy and I tend to put my life on hold while I wait.  And that is one of the reasons why I have been MIA here.  My wait has been going on since before Labor Day.

My very good friend came down with shingles last winter.  She still is suffering from the side effects.  Thankfully, there is a vaccine for this and the recommended age to get it has been lowered from 60 to 50.  Of course, insurance companies aren't paying for this yet, but J said she would pay four times the amount it costs ($250) just so she wouldn't get shingles again.  K's doctor strongly suggested that he gets this--and with K's kidney problems, he definitely needs to watch his overall health closely--so we started doing research and making phone calls to see what we need to do to make this happen.  Other than making sure we could pay for this, K was good to go whenever he wanted.  For me, it was another story.

Being on Enbrel, I knew I couldn't get the shingles vaccine, as it is a live-virus vaccine.  Also, GETTING shingles while on Enbrel is not a good idea--there is the possibility for some extremely serious side-effects.  I knew I didn't want to get shingles, so I had to find out what I needed to do to make this happen for me.  There was next to no info that I could find on the interwebs--other than 'do NOT get a live-virus vaccine while on Enbrel.' So, my first call had to go to my dermatologist's office to find out how long I had to be off of Enbrel in order to get this vaccine.  I needed to know how many days/weeks/months after my last injection was a safe amount of time for me to get the shot and then I had to know how many days/weeks/months AFTER before I could go back on Enbrel.  This call took place a week and a half before my appointment at the internist's office--plenty of time for me to get the info needed so that the internist and I could plan my course of action.  At least you would think so.  The call-back from the dermatologist's office never happened, so I went to my appointment completely unprepared.  NOT. HAPPY.

As soon as my appointment was done, I marched up to the dermatologist's office to see if I could get any answers from them.  As it turned out, they weren't getting very much info themselves.  The closest anyone would come to answering their questions was a drug rep said that 3weeks before and after should be okay.  With that small amount of info in hand, I decided to make a couple of calls of my own.

My Enbrel is handled by a specialty pharmacy, so I called to see what they had to say about all of this.  The pharmacist said he is hearing that patients are abstaining from Enbrel from 2-4 weeks on both sides of the vaccination.  So, the 3 weeks that the dermatologist was told is in that time frame.  I then called Amgen, the company that makes the drug--WHY I didn't do this first is beyond me--just to see what they had to say.  I was NOT impressed or happy.  The recommendation?  'Every case is different and every patient needs to talk to his/her own doctor and plan a course of action designed specifically for him/her.'  Big fricking whoop.  So, it was back on the phone, this time to my internist to see how we are going to proceed.  I made the phone call last week Tuesday.  I still have not heard back.

Tuesday will be four weeks since I last gave myself an injection and I don't know how much longer it will be before I am in a full-blown psoriasis flare.  So far, my skin isn't reacting too much to the absence of Enbrel. I am finding some stiffness in my joints that could possibly be the beginnings of arthritis, but I'm not going to jump to any conclusions.  Right now I just want to get this over with so I can get back to my life--and the sooner the better.  When I finally get the go-ahead for this vaccination, I'm hoping there will actually be vaccine available--shortages have been occurring.  I'm really, really hoping all of this can be resolved in the 8-week time frame I had in mind when I first started considering this.  'Cause I REALLY don't play the waiting game well, at all.


***My update on this story can be found here.

PSA*

*Public Service Announcement (for those who don't know)  ;)

Every so often, I feel as if I haven't done enough with my life, so I take it upon myself to do something to rectify the situation.  Today, I will pass on some knowledge that you may or may not already know.  If you don't know this already, it may save you some time if your doctor ever prescribes a little something for that 'rash' you have.

One of the first things that a doctor will prescribe for psoriasis (for example) is a topical medication.  They can possibly be effective and they are non-invasive, so topicals are a first choice.  The term 'topical medication' seems to be very straight-forward and uncomplicated, right?  WRONG!  I have found that there are, basically, three TYPES of topicals that can be prescribed.

The first type of topical that I'm familiar with is the lotion.  Now, when you think of lotions, you probably think of hand or body lotion--a creamy, free-flowing liquid that is quite a bit thicker than milk.  A topical medicine that is called a lotion is usually thin as water and colorless.  Lotions can be used rather easily on the scalp, but aren't usually used elsewhere on the body.

A cream is another form of topical meds.  Creams usually come in a tube that resembles toothpaste.  The advantage to creams are their being somewhat thicker and are usually quite easy to apply and absorb.  Creams are usually white in color.

The third topical is an ointment.  Ointments are what they sound like--they are petrolatum based and resemble Vaseline, both in color and texture.  The advantage to ointments is that they are great for keeping the skin moisturized, but they are messy and don't absorb into the skin very well.

Many topicals come in more than one form--I have had certain meds in all three forms.  And some work better in one form than in others.  It takes a bit of experimentation to find what works best--and I had many, many years worth of using them to get to where I know one from another.  I hope this little post helps someone at some time.  ;)



(Sorry this is so lame, but I am trying to get back in the groove of blogging on a semi-regular basis.  I certainly hope all of the topics I pick to write about aren't quite as boring.  :D)

I Want To Know This Person

While I haven't had a stranger make a comment about my psoriasis, several family members HAVE--and I don't care WHO makes a rude comment, it hurts.  This person is my hero--and probably had way too many rude comments made and decided to 'get back' at people who make them.  It also is very, very funny.  Via Not Always Right.

Convenience Store | North Battleford, SK, Canada

(I have psoriasis, a hereditary condition which leaves me with large red patches on my scalp. This occurs while I am waiting in line at a convenience store with a woman standing behind me.)
Customer: “What’s wrong with you?”
Me: “I beg your pardon?”
Customer: “Those ugly blotches all over your head. What do you have?”
Me: “Oh, it’s a highly contagious flesh eating disease. Very painful.”
Customer: “Oh my gosh! Really? How contagious is it?”
Me: “Well, you probably already have it.”
Customer: *rushes out of the store in a panic*

Some More Updating

I am celebrating a one-year AND a two-year anniversary around this time.  So, I thought I would mark the anniversaries with updates.

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Almost two years ago, I had LASIK surgery to correct a VERY bad problem with near-sightedness.  And I'm still not unhappy that I did it.  Granted, there ARE things that I'm not happy about--mostly having almost NO ability to focus on things that are close.  (It makes doing a GREAT manicure next to impossible.)   There is a certain range that, even with reading glasses, I can't get in full focus.  But, I'm not too upset about it.  The freedom from regular glasses is WONDERFUL.  I almost have forgotten what it is like to have to wear glasses to see. 

I would do the surgery again in a heartbeat.  It is a wonderful thing.  However, I think I would be more inclined to have the surgery that corrects for BOTH near- AND far-sightedness.  I was too worried about having THE BEST distance vision, so I opted for the single correction.  Now, I wonder if I made the right decision.  I'm not sure how long--if EVER--it would have taken me to get used to having each eye being dominant for different usage.  I was very afraid that I would feel nauseous and not be able to get used to the correction.  (They showed me what it would be like--with special glasses--if they did the double correction.  I didn't like the feeling.)  

The most fun I'm having after the surgery is buying reading glasses and sunglasses.  After years and years of putting the same glasses on my face day after day, it is great to be able to wear new glasses whenever I want--and be able to afford them.  Glasses as a fashion accessory:  a very new concept for me.

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A little over a year ago I made the decision to go on Enbrel for my psoriasis.  This was a decision that I didn't make quickly--actually I had been thinking about it for years.  The side effects--mainly the fact that the immune system can be compromised--was the big reason why I didn't start on it sooner.  However, I was flaring very badly and decided I had just had enough, so I began Enbrel.  And so far, so good.  

I had moderate to severe psoriasis.  At least 5% of my body was covered--and it could have been 10% or more.  Of course, most of the psoriasis lesions couldn't be seen by most people.  My scalp was bad, as well as my fingernails.  I had lesions covering a good amount of my stomach, back, elbows, and areas of my legs.  After a year, I am almost in complete remission.  My scalp is completely clear, my stomach and back are clear, and my fingernails are beginning to heal.  I have a few small spots on my elbows and knees, but the combined areas of my skin that are compromised today makes up 1%* or less of my body.  I think I can say that Enbrel has been a resounding success for me.

As for side effects.  Well, there are a few.  I still have injection-site reactions.  Almost every time I give myself an injection, I get a red, warm area around where the needle went in.  For the most part, everything is back to normal within a day, so this isn't a problem for me. The only other 'side effect' is when I have to quit my injections when I get an infection--such as when I got the swine flu in November.  I didn't have a flare while I was off of the drug for the two weeks, but I don't like taking the chance.  But, I have been lucky and haven't had an increase in infections like some people have had.

I still don't know what will happen to me now that this health care bill is in place.  So far, we still have our same prescription insurance, but I haven't seen the new contract and don't know if there are changes coming up in the next year or so.  If I have to pay full-price for the Enbrel, I will have to go off of it--there just is no way we can afford $20,000  a year so that I can have clear skin.  But, I'm trying to not think about it--and just enjoy what I am experiencing right now.

*The palm of the hand equals 1% of the skin.

World Psoriasis Day

Today is World Psoriasis Day. This is an annual event to bring awareness to this infuriating disease. As I have mentioned ad nauseam, I suffer from psoriasis and try to dispel myths about it whenever I can. Here, from the World Psoriasis Day website:

About psoriasis

Psoriasis
Nearly three percent of the world's population endure the symptoms of psoriasis. Many tolerate constant pain from cracking and bleeding skin. They bear the humiliation of continually shedding scales that litter their clothes and surroundings. They struggle with the disappointment of treatments and the lack of a cure. Some wrestle with a crippling form of arthritis, called psoriatic arthritis. More than anything, they sometimes bear the brunt of public rejection because of the misunderstanding surrounding the disease.

Yet, much of the world's population finds psoriasis a trivial matter requiring little understanding or sympathy. Sometimes they even find it humorous and enjoy a chuckle over the "heartbreak of psoriasis" an advertising tagline made popular in the USA. Some people still equate psoriasis with being unclean or self imposed and shun those who bear its mark. When, in fact, many people with psoriasis isolate themselves because of such a deep sense of shame.

Psoriasis associations from around the world give people the tools to cope with this troubling disease. They rebuild people's hope and give them the support they require. IFPA provides the reinforcement to build better psoriasis associations, gives member associations a global voice to campaign on behalf of those who bear its mark, and the unity that strengthens everyone's ability to support research that will someday find a cause and a cure for these diseases.

What is psoriasis?
Psoriasis is a life-long skin disorder that causes red, scaly patches called lesions to appear on your skin. The lesions can show up on any area of the skin. There are several different kinds of psoriasis.

Plaque psoriasis is the most common form of psoriasis and it is characterized by red-looking skin lesions topped with silvery white scales.

Guttate psoriasis is also fairly common and it is characterized by red, small, dot-like lesions covered with silvery white scale;

Pustular psoriasis has blister-like lesions of fluid, which is not infectious, and intense scaling. It can appear anywhere on the body, but often it appears on the palms of the hands and the soles of the feet.

Inverse psoriasis is very red lesions with little or no scales and appears in the skin folds, such as the arm pits, creases in the groin and under the breasts.

Erythrodermic psoriasis is rare and looks very red and swollen, lots of shedding of dead skin, and painful.

About 30 to 50 percent of people with psoriasis also get psoriatic (sore-ee-attic) arthritis, which causes pain, stiffness and swelling in and around the joints. This type of arthritis most often affects the hands, feet, wrists, ankles and lower back.

Who gets psoriasis?
Psoriasis affects nearly three percent of the world's population. It can develop in males or females of any race or age. It often appears between the ages of 15 and 35, although it can strike at any age including infants and the elderly.

What causes psoriasis?
No one knows exactly what causes psoriasis. Doctor's believe it is related to the body's immune system and that it is genetic, meaning that it can run in families. In people with psoriasis, the immune system is mistakenly "triggered" causing skin cells to grow too fast. The rapidly growing cells pile up in the skin's top layers, leading to the formation of lesions on the surface.

Right now, there are many psoriasis associations around the world supporting research to find out why people get psoriasis and how it can be treated or even cured.

How bad can psoriasis get?
Psoriasis can be limited to a few areas of the skin (mild), or it can be moderate or widespread and severe. A normal skin cell matures in 28 to 30 days and sheds from the skin unnoticed. Psoriatic skin cells mature in only three to four days. They "heap up" and form scaly lesions. Psoriasis lesions can be painful and itchy and they can crack and bleed.

How do I know I have psoriasis?
A physician usually makes the diagnosis after looking at the skin. Occasionally a physician examines a skin biopsy under a microscope. Pitting of the nails is sometimes a sign of psoriasis. There is no specific medical test for psoriasis.

Is psoriasis contagious?
No, people cannot catch psoriasis from someone else.

What are some of the myths surrounding psoriasis?
Unlike other ailments, psoriasis can be seen on the skin and often people guess at what is wrong. They wonder if the lesions might be contagious, which they are not, or that the person who has psoriasis is unclean, overly nervous or high-strung, which they may be, but that is not the reason they have psoriasis. Sometimes they may believe the person who has the skin disorder did something to cause psoriasis to appear but that, too, is also false.

Psoriasis is a disorder stemming from a physical defect just like other disorders, such as arthritis, asthma, diabetes or nearsightedness. It is very important to educate the public about psoriasis and not allow myths to spread.

What are the chances of getting psoriasis?
It is not possible to predict who will get psoriasis. Heredity (the genetic transfer of features from parent to child) plays a role, but some people who have psoriasis have no obvious family history of psoriasis.

Is there a cure for psoriasis?
Not yet. Psoriasis is a disorder that most often needs lifelong treatment. And because there are so many different medications for the disorder, it may take some time before the right treatment or combination of treatments will work for an individual. Sometimes psoriasis becomes worse (called a flare) than at other times. In some cases, psoriasis can go away on its own for a period of time, which is known as a "spontaneous remission."

It Was Time

Over the last little while, I have been worrying more and more about the health care bill that our officials are trying to shove down our throats--and I decided that I needed to say something. So, I composed a letter/email to send to my congressman and senators. Early on Monday, I sent this:

To begin, I am not writing because I believe what one political party tells me more than another. I am not writing because some group has told me what to say. I am not a part of some big conspiracy to make your life miserable. I am an intelligent woman who has done research and reading about the health care bill. Frankly, I am scared to death that this might be passed. There are many concerns about this bill that I have, but will not repeat the ones that have been reported widely. I will zero in on one very selfish concern that I have. Hopefully, this will give you one more viewpoint to consider when you have to vote.

I have battled psoriasis for the past 35 years. This disease has not been life threatening in any way, but it has impacted my life in very negative ways. Because of this disease, I have found myself becoming more of a recluse and dreading having to leave my house, as I worry so much about what clothing to wear in order to cover my psoriasis 'spots.' The hiding of my condition and the work to try to control this disease is a big part of my life and takes quite a bit of my time. Actually, I should say it DID take up a lot of my time, because my psoriasis is under control and I'm almost 'spot' free for the first time in many, many years. And this is where my concern about the health care bill comes in.

A little over three months ago, I began using the drug Enbrel for my psoriasis. Enbrel works on auto-immune diseases such as psoriasis and works very well. This drug is also very, very expensive. For a year's supply of Enbrel, the cost is about $20,000. I don't pay this amount, as we have prescription insurance, but if there is national health care, I don't see how this medication would be approved for me to use. Now, how do I figure this? Easy. Paying $20,000 for me to have clear skin so that I can feel better about myself, seems to be a very frivolous expense. If the decision had to be made between spending that amount of money for my medication or the same amount for a child's asthma medication, who would 'win?' If I had to decide, of course the child's medication would be paid for over mine. A child would 'win' every time. But, selfish as it is, I don't want to give up how well I am feeling with this medication. Right now, we pay for our health care/prescription insurance and want to continue doing so in order to enjoy the benefits we receive.

PLEASE don't tell me not to worry, that everything will stay the same for us. Unless you, the President, and every public official can give me a written guarantee that my health insurance won't change if the health bill is passed, I WILL worry. While there needs to be some reform in the medical costs in this country, I feel as if the operative word is REFORM. I don't believe we should throw away what we have and start an entirely new and unproven program when all that is needed is some fixing of what is already in place. I ask you, please, to not support this bill and vote no. We, the voters, do not want this.

Sincerely,
cmk

As of this post, I have only had a 'thank you for contacting me' form reply from my congressman, but that is alright with me. All three of the ones I wrote to are Democrats and the two senators--Stabenow and Levin--are left of Barack in terms of how liberal they are. I don't think if either of them told me my name is cmk that I would believe/agree/trust them. As for the congressman, he was siding with the 'blue dog dems' in terms of the health care bill, but doesn't seem to be as opposed lately. The only thing he and I have in common is an opposition to abortion--other than that, he is a dem through and through. I don't want a response from any of them if it is in any way comparable to the one I received the last time I emailed the senators. The tone of the response--at least the way I read it--was the same as a parent explaining the error of a three-year-old's thinking. I found it extremely condescending and don't need to be treated that way. So, it is better to not hear a thing.

Will my email do anything? No. Do I feel better for having sent it? Yes. And I think I will continue to let my voice be heard--often.

A Followup

I wanted to say that I have no intentions of turning this into a political blog, despite my last post. The post came out of a sense of frustration that I am feeling. Lately I have been reading about the proposed universal health care that the POTUS wants implemented and I have to say I AM SCARED TO DEATH! Without going into everything that scares me, I will focus on one very selfish reason why I don't want universal health care.

Anyone who reads this blog knows that I have psoriasis. I finally have found a medication (Enbrel) that is helping to clear my skin. The cost of Enbrel for a year is $20,000. Now think about it, will I be able to get this medication under universal health care? And if I COULD get it, would I get it for the $120/year that I am paying right now? (And be truthful--would YOU be happy paying for this medication for me with your tax dollars?) This medication is CLEARING MY SKIN. My skin looks pretty much like most people's does now and that is basically what this very expensive drug is doing for me. (With on-going research, it may be shown that psoriasis IS a life-threatening disease, but right now it isn't considered as such for most people.) Does anyone think that I will be given this medication, for free, just because I want to be able to wear short-sleeved shirts in the summertime? So, let's weigh this: Me--$20,000 for clear skin vs 8-year-old child--$20,000 for asthma medication. Who is more deserving? And who would deny the child the medication just so another could feel better about him/herself? OF COURSE I would give up the medication so a child could be well!

Until someone can GUARANTEE that I will be able to see my own physician whenever I want and that I will have access to EVERY medication available and that I wouldn't have to have my tax dollars pay for procedures that I DON'T AGREE WITH (abortion), I want the government to stay the hell out of my health care!

Let's Get Ready To Ramble

For the most part, I seem to be doing okay after Friday. However, today isn't quite as good of a day as yesterday was--I find myself tearing up for no reason at all. This whole thing hurt very, very badly and won't be better any time soon.

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I STILL am obsessing over my neighbor's lawn ornaments. She continues to take them into the garage every night. As I have said WAY too many times, I REALLY need a life!!!

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Because of the 'discovery' yesterday, I am now re-thinking the amount of food the cat has been eating. I wonder if we caught all of the mice that have been running around. Got to stop thinking about this--I feel itchy and have the willies all at once!

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Looks like we will be getting summer after all. This entire week should see temps around 70 degrees. It can't end fast enough for me. The warm weather, that is. :-/

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We STILL haven't gotten any planting done. But, the temps haven't been real helpful in terms of gardening, either. K is now going to be off for almost 10 days, so things should get done. I will NOT go the entire summer without tomatoes from our garden!

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Looks like we may be doing a road trip this weekend. We haven't done an over nighter but once since coming home from Florida, so it is time. I only hope it won't be too hot to enjoy myself!

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Five weeks into the Enbrel therapy and all seems to be going well. I still say that, overall, my skin has improved 75%. I don't have 75% CLEARING, but some areas ARE free of psoriasis. I continue to have injection site reactions, but the doctor said they will diminish and there is no reason for me to stop using the Enbrel. If things continue as they are, I WILL have massive areas of clear skin by the three month mark. At least, I hope so!

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There are less than two months till I reach my ten year anniversary of quitting smoking. And I think I now know what I will get myself as a gift: a smart phone! My youngest and her husband have Blackberry Pearls and love them to death, so that is a possibility. However, ATT has the Nokia E71x and I WANT!



I have never had anything BUT a Nokia, so this would satisfy me. Also, I REALLY miss my Palm and this would be a nice replacement. I will have to think about this--I do have time. BUT, I'm pretty sure I will own this phone two months from now.

Enbrel Update

Today I finished the first box of Enbrel and so far things are going well. I am already seeing a difference in my skin and can only hope that things will keep getting better. The only problem is that I went to the tanning salon yesterday and now my psoriasis 'spots' are a nice shade of cherry red! (It is fading, though.) I have never had this as a big problem before, so I can only think it is a reaction to the Enbrel--even though the doctor said there is nothing to keep me from tanning while using it. This whole situation is very much a learn-as-I-go process. Last night I thought I was coming down with something, but things are better today. My tonsils are a bit swollen, but that could just be my allergies/sinuses acting up. I will, however, keep a close watch and get my buns to the doctor ASAP if it looks like I need an antibiotic.

Using the epi-pen/sure-click to inject the meds is the only way I could EVER give myself an injection. And it is VERY easy to do--and the 'pain' isn't too bad. (Actually, it is more of an intense kind of sting as the meds are going in.) The entire process only takes about ten seconds, so it isn't a long length of time. Yet, because a needle is involved, I don't think I will EVER be able to do this with a nonchalant attitude. I seem to overthink the whole 'giving myself an injection' thing and find myself getting nervous and having to stop myself from having a panic attack. (It HASN'T gotten to that stage and I hope it never will.) The amount of 'talking to myself' that I have to do is unbelieveable. WHY am I so damn neurotic? :D

Dying To Get Better

So, I finally made my decision. Today I gave myself my first injection of Enbrel--and I did very well, indeed. I never thought I would be able to actually come anywhere close to my skin with a syringe, but I did. Okay, so it was an epi-pen, but still...

I took six months to do research and think about using this medication. I went back and forth and asked for guidance from a lot of people. My internist isn't COMPLETELY onboard with this--he likens using the Enbrel to killing a mosquito with a flyswatter--but he will honor what I want. When I told him how much my psoriasis affects my lifestyle, he reluctantly agreed that I probably should try this. I have high hopes that things will go well for me.

I will have to be careful from now on when it comes to being around people--if there is someone who is sick, I will have to stay away. This makes it that much more difficult to see the grandchildren--they seem to ALWAYS be sick. (Of course, with six kids and most of them in school, they always are being exposed to one thing or another.) This is something that I will worry about until the first time I get sick and see how I do. But, I won't TRY to get sick just to test things.

My next appointment with the dermatologist is in three months--this is about how long it will take to see how well the Enbrel is working and whether or not I will continue to use it. I am hoping things will go a lot faster than that--but, then, I AM impatient. Until then, I will be injecting myself twice a week and hoping I don't have any horrifying side effects!

Decisions

As I have mentioned before, I have psoriasis. Psoriasis is a non-contagious, incurable, autoimmune disease that affects the skin. Simply put, a normal skin cell will mature and fall off of the body's surface every 28-30 days. With psoriasis, a skin cell will mature every 3-4 days and move to the skin surface. In the most common form of psoriasis--what I have--patches of skin, called lesions, become inflamed and are covered by silvery white scale. The scale is the dead skin and is what makes the flakes--the most recognizable symptom of psoriasis. Psoriasis can be mild to severe and can affect most every area of the body.

Some people have patches of psoriasis that will cover large areas of their body--such as the entire lower leg or back. There is always the possibility of cracking of the skin and infection setting in, but it isn't very common. In some cases, the lesions look like a very large area covered by a rash with dead, scaly skin covering it. Not a real pretty sight. While I have most areas of my body showing signs of psoriasis, mine isn't nearly as bad as it could be. My scalp, fingernails, stomach, knees, elbows, back, chest, and butt cheeks do--now or at one time--have psoriasis lesions. Even though I have quite a few compromised body areas, I am undergoing a bit of a remission at this time. Now, that DOESN'T mean I am uncovering parts of my body any time soon, it just means that things are going better than they have been for a while. A lot of my body lesions look like flat, white patches--and aren't very dry looking at all. The areas on my knee and elbows are dark pink to red and shiny, but, again, aren't scaly. As a matter of fact, it looks as if I have burns more than anything else--something on the order of what it looks like right after burning yourself on an iron--only larger.

A lot of people with psoriasis find it itchy--and some will scratch to the point of breaking the skin and causing bleeding. Thankfully, I don't have itching. My worst time with itching was the REST of my skin--and I pretty much eliminated that problem a few years ago when I quit using detergents, etc, with any fragrance. I either have a sensitivity or allergy to some fragrances--and I don't know how much, if anything, it has to do with my psoriasis.

Because of the scale, a lot of time people spend taking care of themselves has to do with removing it. Removal of the dry skin is important so that any topical medications can reach and be absorbed by the 'new' skin underneath. I am lucky in that I usually can remove any dry skin in the shower--I just have to stay under the water long enough. Once the dry skin softens, I can remove it with a loofah or other means of exfoliation. Because of my skin problems, I MUST shower every day--and because I shower every day, I am able to keep up with removing the dead skin. If, for whatever reason, I am not able to shower one day, it can take me up to two weeks to get my skin back to the way it was before the non-shower day. Psoriasis takes up a good part of my life.

At the very least, I must apply topical medications to every lesion on my body once a day. I try to get some of the areas--mainly my elbows--twice, at least. Some of my meds are creams and they go on quite easily. Other meds I have are ointments--NOT nearly as easy to apply. The ointments are the exact texture of Vaseline. Stop and think about it for a second: you have to apply--AND rub in until absorbed--Vaseline to LARGE areas of your body. (For me, this involves most of the stomach and the upper half of my back--as well as other areas.) The more you rub it in, the less mess you make on your sheets or clothing. BUT, the longer you rub it in, the more time you are spending NOT sleeping or doing something else you would rather be doing. I spend anywhere from 15 minutes to a half hour each time I apply my meds. This is on top of the 20-30 minutes I spend in the shower. Psoriasis robs you of a lot of your time.

I have, and use, A LOT of medications for my disease. Mostly, I use topical meds and most of them are extremely potent steroids. And the newest meds are very expensive. For example, one of my meds costs more than $200 for a 60gm tube--about the size of a medium tube of toothpaste--and this might last me for a month. (I have insurance--the ONLY reason I am able to use what I do.) Right now, I have 8 different meds for my body and scalp that I use on a rotating basis. Why rotating? Well, meds have a funny way of becoming ineffective over time with psoriasis, so I try not to use any one thing for too long of a time before changing to something else. Also, I find that I have to use different meds on different parts of my body--not everything works the same everywhere. I can't use most of my meds on my face or in the folds of my body--like under the boob or armpit--because they are too harsh and the side effects can be bad. Side effects of the steroids include thinning of the skin--which can cause the skin to split open--stretch marks, rash, inflammation of the skin, and discoloration. Of course, I do often wonder how the absorption of all those steroids are affecting me physically. Hmm, I could probably blame quite a few of my problems on that. Right now, other than prescription meds, the other thing I do to help my skin is I go to the tanning salon twice a week--with my dermatologist's reluctant approval. (Tanning DOES help me, but it, too, loses its effect over time.) I also get cortisone injections periodically. Unfortunately, my dermatologist won't do them as often as I would like because of side effects. Besides, they, too, have limited benefits--some areas will get better, some won't. That's way that goes.

Speaking of meds, I have used most everything out there. Over the years, I have used many prescription meds, most of the over-the-counter ones that are made, and a number of mail/internet order things--even some that can't legally be sold in the US. I have tried the 'diet'--or a reasonable facsimile--and various other things that 'have worked' for other patients. (I find out about 'remedies' online or at the National Psoriasis Foundation website.) Unusual things I have used: cider vinegar, Dead Sea water, coal tar in various forms, every skin moisturizer known to modern--and maybe even ancient--man, sulfur soap, goat's milk soap, oatmeal soap, and various soaking products, including Dead Sea bathsalts. I can't remember everything I have bought, but it is like someone suffering from cancer: if it can't hurt--and sometimes even if it CAN--you will try anything to cure what you have.

Even with all I go through with my psoriasis, I am one of the lucky ones. Very rarely will I have any amount of pain associated with any of my lesions and I don't have bleeding episodes often. (My cousin has psoriasis on the palms of her hands and they crack and bleed.) I don't have many itching episodes and I am pretty much able to keep the scaling to a minimum. Other than my thinking I am on the verge of developing psoriatic arthritis, my biggest problem with my disease is of an aesthetic nature: I don't want anyone else to see what my skin looks like. This has made me into more of a recluse than I want to be, as I can't go to places if I don't have the proper wardrobe. This also makes me hate the summer--it is hard to go out in 90 degree weather when you have to wear long pants and long sleeves. My wardrobe consists of 3/4 to long sleeved shirts and jeans--and not much else. It has been over a year since I actually wore a short-sleeved top outside of the house. The closest I will come is elbow-length and that is because most of my elbow will be covered. There are days when I just want to sit down and cry over my situation--it can be VERY depressing.

This brings me to the decision I have to make. There are some fairly new drugs that are being used for psoriasis and they are called biologics. Biologics work on T-cells and have a remarkable success rate. Now, they don't CURE psoriasis, but most patients have great success using them. One bad part of these drugs are the fact they work on the immune system. There are side effects and one of them is the possibility of infections or not being able to ward off infections easily. Another bad thing is that you have to use these long term--possibly forever--for the results to continue. These drugs have to be administerd by needle--either self-injection or by IV at an infusion center. And the biggest negative is the cost: $4000 for three months. (My insurance would probably pick up most of the cost.) I have to weigh whether or not the negatives are mild enough for me to do something for my self-esteem, or is it just not worth it? I have to talk to my primary care physician before taking this step, as he can help guide me--he would know if any of my other medical problems might be a reason for me not to use a biologic. I LOVE the thoughts of possibly being able to wear anything I want again, but then I have to ask myself, "At what cost?" A big decison that I will make before the end of the year. I only hope I make the right one.

A Visit To The Doc

Let's say you have a pain in your shoulder. You finally decide you must see the doctor. After an exam, the doc says you have bursitis and need a cortisone injection cause you waited so long to be seen. The doctor takes a syringe with a relatively long needle and jabs you in the shoulder. When I say 'in the shoulder,' that is precisely what I mean--you get the needle in the joint. That's why the needle is long. Then, while the needle is in your shoulder joint, the doctor begins to manipulate it and move it around to find the spot where the pain is. S/he might also move your VERY sore shoulder back and forth in order to get the needle exactly where it is needed. The plunger is pushed and the cortisone goes to the pain. All of this takes a few minutes and is excruciatingly painful.* So tell me, WHY did I ask the doctor for a cortisone injection today?

Okay, truth be told, I DIDN'T have any pain and I had no joint involvement with the injection--I just wanted to get your full, undivided attention. I'm an attention whore, so sue me! :) I had an appointment with my dermatologist and I asked if she could give me cortisone to see if it would help my psoriasis. We decided to try the spot on my ankle and re-evaluate in six weeks to see if we continue. While the injection in no way was as awful as getting one in the joint, it wasn't exactly pleasant, either. First, I got poked six times in the ankle--albeit, just under the skin, but still. Then, while the needle is inserted, the doc wiggled it from side to side a bit in order to distribute the cortisone in as wide an area as possible. EWWWW!!!! While it didn't take all that long for her to do this, I still could have done a lot of things that were more pleasant--like clean a toilet, pick up my cat's hacked-up hairballs, scoop out the litter box. You get my drift. She added an anesthetic to the cortisone in order to numb my ankle, so I am now left with a very funky-feeling leg. I hope this was worth it--we'll see how things look after a few days. All this just so I can wear shorter-length capri pants for the summer. I don't know. I have to decide whether or not I want to get my elbows shot up--but short-sleeved shirts aren't REALLY that important, are they?

*The Mother has had several of the painful cortisone injections, so it is her description that I use here. Thankfully, I have never needed one and hope I never do.

Rapunzel, Rapunzel

The other day Burg blogged about her 'hair through the ages'--this after she got a cute, new, sassy haircut. Never letting an opportunity go by to steal an idea from someone else, I decided to do a post about my own hair. And I guess it didn't hurt that I had my monthly cut/color done today to motivate me, also.

When I was a child, my hair was so white that it was almost translucent. And it was fine and wispy: fine, Finnish, fairy fur. Most of the kids with Finnish ancestors that I know have the same kind of hair--it is as we get older that things can change.

In high school, my hair was a pretty color blond--not too light and not too dark. It almost was an ash blond, I guess. I wore my hair very long and straight--as so many high school girls do/did. I wasn't able to do much more than that with the hair because it was so thick--enough for two people, actually. When I put my hair in a 'pony tail,' the description was VERY fitting! This was when I really got used to taking a bath/shower at night, because it took all night for my hair to dry. I REALLY didn't want to go to school in below zero weather with a wet head--NOT a fun activity.

I began wearing my hair shorter when I was pregnant with my first. My hair was about waist-length and I got it all cut off to chin-length--I figured, rightly so, that it would be much easier to take care of with a newborn around. Not only did my hair continue to get shorter as time wore on, it also began to get darker. Don't know why--but The Mother had the same thing happen to her, too.

For the last several years I wore my hair in a short bob--just about earlobe-length. It was a flattering cut for me and easy to take care of--my hair just naturally bends under, so I only have to blow dry it and it falls into place. (Of course, if my stylist wasn't as talented as she is, NOTHING would work--thanks, Barb!) Then one day I took a good look at myself and realized the short hair really wasn't the best fit for me. Over the years, I have added a little too much weight to this short, stubby body of mine and having too short hair just isn't right. I realized that having too short hair would cause me to look just like a beach ball with a ping-pong ball balancing on top--NOT a good look! So, the decision was made to let it grow out. I now wear it longer--several inches below the top of my shoulders. Definitely a better choice--now the top and bottom balance out a little better. :)

Unfortunately, my hair has not retained its thickness--and I'm not too sure why. I suppose some of it has to do with age, but having thyroid problems and psoriasis has taken it's toll, also. I probably could get used to having less hair, it's the thinner texture that I can't handle--I ALWAYS had such thick, heavy hair that it is hard to accept the thinner, finer hair I have today. I keep telling the oldest--who has even MORE hair than I did--that her day will come, too. The mother's curse--it will work once again. :)

I have always wanted to have short, spiky hair. I figure that would be about the easiest to take care of--but, alas, that can't happen before I drop about 3000 pounds! The friend I go to see when we do road trips has the short, spiky hair and it looks so good on her. Of course, she weighs about 65 pounds--AND she is about 5 inches taller than me--so she HAS to have short hair so that she won't look like she's about to fall over! (This is the same friend that 'bloated up' to about 75 pounds when she was pregnant--for her twins! I think I hate her!) It looks as if I will be sticking to the longer hair for a while.

As I said, my hair has gotten darker over the years. Now, this WASN'T the reason I started to color it--the reason was the grey. Before I go any further, I MUST say my grey hair isn't ONLY because of age: one of the favorite activities a group of us used to participate in during boring lectures in school, was to see how many grey hairs could be pulled out of my head. Yep, I started getting grey in high school. And, actually, it is VERY slow moving--I don't believe I am any more than about 15% grey under the dye. And if there is more than 15% going on, I don't really want to know about it. I wouldn't mind going natural if my hair would be a pretty color, but it won't. The Mother has unattractive grey hair and I know mine would be just as sad--salt and pepper, but NOT in a good way.

Right now my hair is a very pretty blond--my stylist outdoes herself every time I go in. However, I LOVE to go VERY funky with color whenever I can. These days we have to stick with the blond because I am frequenting the tanning booth--for my SKIN, not for the color--and any color other than blond wouldn't last more than a week before fading. My preferred color is red and I can't wait to get back to it--but I will live with the blond just as long as I have to be under the 'hot lights.' I would have very crazy things done to the color, but my stylist is MUCH more conservative than I am. My motto when it comes to color: I don't want anyone to think this color is real! We have managed some funky things and it always is so much fun.

My whole attitude toward hair is this: it should be a fun accessory. Do whatever you want to my hair--if I don't like it, change it. If the color is wrong, we'll change it back. If the cut is wrong, the hair will grow. It's not worth getting upset about if it isn't right--time will fix anything.

Use Meds AND Get Dead

"Some people say that cats are sneaky, evil, and cruel. True, and they have many other fine qualities as well." -- Missy Dizick
(the quotes have NOTHING to do with my posts--I just like them! :))


As I 'revealed' several posts back, I have psoriasis. Anyone who watches TV has seen the commercials for a 'new and better way' to treat the disease. Well, the new way is a drug that is injected under the skin and it works on a person's immune system--as psoriasis is an auto-immune disease. This has had an amount of success and I was very happy when they first came out with it: maybe a way to go into complete remission! WRONG! As of now, I will not be going that route--going to the tanning salon has helped me a lot, so I will continue with that. I received, in the mail, a packet containing info on one of the biologic treatments out there and I thought I would give you an idea as to why I won't be using the new treatments any time soon. (As if you asked or REALLY want to know! :))

Now, I'm not saying that using this stuff is wrong for EVERYONE--we all have to make our own choices. What I am saying is this: a person has to do a lot of research and soul-searching before agreeing to use this stuff. The side-effects are rather frightening. (I won't mention the name of the particular drug I have paperwork on--suffice it to say, all of the similar drugs have the same side-effects.) Here we go (and this is just what the company ADMITS to): serious infections--including tuberculosis and sepsis, nervous system disorders, blood problems--including symptoms that resemble lupus, heart problems, allergic reactions, malignancies, injection site reactions, upper respiratory infections, and headaches. YIKES--scary stuff!

After pondering the list of side-effects of what I WON'T take, I thought I would look at the side-effects of the stuff I AM taking. Just as scary! Here are some of them: headache, sore throat, nosebleeds, hair loss, stomach upset, dizziness, cough, nausea, hallucinations, fever, irregular heartbeat, easy bruising or bleeding, seizures, heart attacks, stroke, blood clots, blurred vision. OMG! And the meds I take are older, not 'new' or 'experimental'--and they are for non-life threatening conditions/diseases (or easily treatable): allergies, high blood pressure, thyroid, etc.

I guess it is true what is in one of my drug-info sheets: a person MUST discuss with his/her doctor all of the side-effects vs. the benefits of any medication. Some people will accept whatever side-effects there are just for the benefits of the medication and some will not. I have weighed the benefit vs. side-effect factors of what I take and am comfortable with my choices. I also have decided against some drugs because of the same factors. It all comes down to this: everyone makes their own choices--as it should be!

FYI

Facts about psoriasis
According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis—a chronic, noncontagious skin disease that causes itchy, painful, red patches. It's a common disease that can develop in anyone, regardless of age, gender or race. It can affect nearly every aspect of a person's life.

During Psoriasis Awareness Month in August, and throughout the year, the National Psoriasis Foundation educates others about the disease. Psoriasis isn't contagious, but awareness is!

Psoriasis is not contagious.
People with psoriasis often face discrimination and embarassment in public places. They're turned away from hair salons, swimming pools, health clubs, clothing stores and restaurants, simply because others fear psoriasis is contagious. It's not. You can't catch psoriasis from someone else. Psoriasis lesions are not infectious and pose no threat to the health or safety of others.

Psoriasis is not a rash.
Some people think psoriasis is a cosmetic problem. In fact, psoriasis is a genetic disease that starts beneath the skin's surface. The immune system sends faulty signals to speed up skin cell growth, causing thickened, scaly lesions on the skin.

Ten percent to 30 percent of people with psoriasis also develop psoriatic arthritis.
Psoriatic arthritis is a potentially disabling condition that causes pain, stiffness and swelling in and around the joints. People with psoriatic arthritis may have difficulty sleeping, using their hands, or walking, sitting and standing for long periods of time. Just getting through the day can be an uphill battle.

Psoriasis carries a serious physical and emotional burden.
According to researchers, psoriasis causes as much disability as other major diseases, including cancer, arthritis, hypertension, heart disease, diabetes and depression.

The emotional toll of psoriasis can be just as much of a burden as the physical aspects. People with the disease may feel hopeless, helpless, depressed and isolated.

There is no cure for psoriasis, but there are effective treatments.
Over the past several years, many new treatments have been developed for psoriasis and psoriatic arthritis. But some people give up on treatment because of cost, hassle or a feeling of hopelessness.

Psoriasis is a lifelong disease, with alternating periods of flareups and clearing. People with psoriasis often face a lifetime of trial and error to find a treatment that works.


On a personal note: I have had psoriasis since I was 18 years old. So far, most people would not know this by looking at me, as I am able to cover up most of my problem areas. I have a mild to moderate case of psoriasis and, as of right now, my disease is mostly of a cosmetic nature. I have not been diagnosed with psoriatic arthritis as of yet, but I think I am beginning to develop it and it is only a matter of time before it becomes a problem. I am hoping there will be a cure within my lifetime. I offer these facts as a way to educate people and, hopefully, keep one person from suffering any embarrassment because of a condition they cannot control.