Tag Archives: Psoriatic Arthritis

Travels…in my mind

I would love to say I’ve been traveled and that is why my last blog post has been so long ago. Ok, so I’ll say I’ve been traveling.  I often do, only it is never a physical trip; I never leave my house!  I go to all sorts of places, however lately I have spent a lot of time with family in California.  I think it is because I had planned a trip there over two years ago now and had to cancel because of a sick fur-kid.  Of course, in hindsight, I did not have to cancel and should not have canceled, but only hindsight can show me that.  Somehow, I don’t think my recent “trips” to the sunny state of California measure up to what it would be like to actually go there!

I have also made return trips to Hawaii, to bask in the sunshine and feel the warm ocean water again!  It is so beautiful with the tropical flowers and the bright colors.  And the Rocky Mountains, in contrast, with their strength and majesty.  The mountain streams cascade with a clear purpose and direction.  And there are so many other places that I visit over again, just to experience their beauty and the peace, the joy and the excitement I felt being there.

In reality, I have just been very stressed and exhausted lately.  I really don’t think the exhaustion has anything to do with my travels, either!  I’ve been having “issues” around the house and I guess I’m just not as good at dealing with them as I used to be.  It just wears me out.  It has set off the RA and the PsA, which as resulted in swollen and painful joints, especially in my hands.  This angers me, as I feel if I dealt with the stress better, I would not have the physical reaction.  And, we all know what this does…yep, makes the physical reaction worse!  Ain’t that productive!

Today, I am going to try to break the pattern and get back to what I want to be doing.  This is my start to that.  So I will try to be more “responsible” in my posting.  I am hoping that the problems  around the house are just about over…although owning a house usually means there is always something that needs tending to.  (I really like having little “projects” to do; I just like being able to DO them, I don’t like things going wrong that I can’t fix.)  Also, it is autumn, my favorite time of year…the colors and the smells are superb!  It will be awesome to be able to once again experience Mother Nature’s bounty! I am so grateful for all that She gives to us.

I won’t stop traveling though, I’ve found it to be a rather enjoyable pursuit.

 

Reclusive or Selective: The Semantic Game

I’ve told myself that I am not becoming reclusive; I am just more selective about what I do. I am not sure if I am just playing a semantic game with myself, but I am sure that my activities are changing.  I no longer log on to Facebook daily, but I do try to check in at least weekly to keep up with the people I talk to via messages.  I just don’t see much value in all the posts, seems like people put the silliest stuff on there.  I mean I guess it’s important to someone what you had for dinner, just not so much to me.  I also don’t tweet, don’t Pin anything nor am I linked in to anyone.  I really don’t spend that much time surfing any more either.  If there is something I need or want to know, I can usually find it with a quick search, read the articles and be done in fifteen or twenty minutes.   I also don’t go out as much as I used to.  I am quite content to stay in my house with my fur-kids. And they seem to get quite upset when I leave them.  Actually, it is getting hard to get me out of my house, not because I am afraid to leave, rather because I am just so comfortable here.  And I am always concerned that I will have to leave because of pain and cause disruption in the activity.  This causes me to stay home a lot also.

I did go “out” over this past weekend, however, and it was an interesting experience.  The “plan” was to go to a street dance that was a local fundraiser for the downtown district where I live.  Of course it was raining a lot, so they moved the party inside.  And they eliminated all the food vendors.  That meant going out to dinner, which we did and it was lovely!  The food was great, the company wonderful and the conversation fun.  Then to the “club” where the party was, which pointed out to me that it had been a long time since I have been in a club and I am getting old.  Wow, was it loud in there!  It didn’t take me long to re-acclimate myself and I found myself loving it! One of my favorite things to do is to “people watch” and there was the perfect spot above the main floor to do just that.  And the band, who were very good, was in the other room so they weren’t so loud! As a bonus, I had a fascinating conversation about a myriad of topics with a very cool woman.  I am glad that despite my desire to stay home, I went and had a great time. I was not able to complete the evening this weekend, as I came home early due to “wearing out,” but the going out was a good thing.

Being selective about what I do is a good thing, and I will continue.  Unfortunately, my stamina is not what it was and I cannot do all the things I’d like.  So I will have to make choices just like everyone else, even if mine are a little more limited.  Looking at the possibilities as though there are possibilities will make a huge difference in my choices.  

Friday’s Fears

It has been too long since I have posted.  I know this, not because of the date, but because my head is exploding with words.  It seems that the only times I have a lot to say are the times I have little time to write.  While the times I have a lot of time to write are the times I feel I have little to say.  I believe that is fear, my friends.  So, today I am taking the time to write and hoping that I am ready for the company that is coming in 70 minutes.  No, I am not showered or dressed yet, so I will have to type rather quickly!

I am back in my funk.  That bicycle I bought July 4th has left my garage three times and one was to go to the bike shop to be repaired.  So I have only been on it twice.  Okay, so I’ve had a double ear infection like forever and the doctor said riding it might not be good, and I have had trouble just keeping my balance while walking, but this would not have stopped me in the past.  So is my common sense getting better or am I just becoming too compliant? I hate being compliant!

The weather here has been perfect, 70’s and low humidity.  We have set records for cool weather in July!  I have slept.  In the house with the windows open at least, but I have slept.  Of course, I found out this has contributed to the double ear infection problem, so now I am sleeping with the windows closed and the air-conditioning on while the weather outside is perfect.  And the kicker:  I am 53 years old and I may need to get tubes in my ears…I think I am a little young to be going through my second childhood!  Don’t little kids get these when they are like 3? I’m no expert on these things, I didn’t have kids and dogs generally don’t get tubes in their ears!

Speaking of dogs, my youngest, and some would say my favorite, Willie (Princess Wilhelmina) has now been diagnosed with allergies and is taking daily medicine.  She is also eating a lot. She is supposed to be a mini doxie, but I am unsure how long we will be keeping the mini part.  I’ve already started the diet; I did that the day I started the medicine and we went to the park for a walk before we started the medicine.  I am very familiar with steroids.  I started them the day before.  I did not do the diet or the walk for myself, however.  I’ve always been better at taking care of others.  I did begin to be more careful with my diet last night, right after I ate the candy bar and the cookies.  I did not eat them in front of Willie, though, so that counts, right?  Today, I am hoping to go back to the park with Willie and might even take my oldest, Rudy, who is diabetic. (I didn’t eat the candy bar or cookies in front of him either.)  Of course that would leave the middle child at home by herself, which would increase my guilt significantly.  This usually means we all stay home.  And sleep.

My other project for today is to “let go” of my former life.  In my previous life I was a mental health therapist.  I was very good at what I did and I believe I helped a lot of people.  This illness has removed my ability to do that work anymore.  I could never handle the stress, the hours and the mental acuity required.  I no longer have the memory that is needed.  That all sucks and makes me extremely sad.  So I have decided not to look at all the books I have that related to my former life.  It is time to give them to someone who can use them.  I have no idea who that is, but maybe my local library does.  So I will start there.  Today a friend will help me box them up and I will deliver them next week.  In addition, I am going to make my “office” at home more of a “studio” where I can be more creative.  Now, it looks like an office, very practical and business like.  I am not business like any more.  Now I am all over the place, I “flit” and that’s okay.  I want to be comfy when I create, not sit at a desk in a desk chair that hurts my body.  So that needs to change.  And today is the day it begins.  It will be a fun project.  I will start with cleaning out the space, so I know what I need/want.  Then I can hit the thrift stores to see what I can find.  What an adventure! Kind of exciting, getting to create a new space in which to create. I am a writer now: maybe not an author (yet), but a writer.  That is my new profession and I am very grateful that I have it.  If I can ever get past the fear of putting the words on the paper!

 

 

To Be (Political) or Not to Be

It has been another week.  This time I have spent it struggling to breathe, dealing with pneumonia.  Another “issue” of having an autoimmune disease is that I catch everything and then can’t get rid of it.  I did avoid the hospital, through begging and refusal at first, and then not calling back for follow-up when I did not recover like “they” said I should.  I got this crap at the hospital, why would I go back there???? That just seems like a no-brainer to me!!  Needless to say, I have had lots of time, in between naps, to watch the TV.  Last weekend an American soldier was brought out of Afghanistan.  I watch a lot of news shows.  I probably need to stop, because I think too much.  I am a thinker.  I process things.  I can chew on a thought until it is reformulated to look nothing like its original concept.  And I listen.  And I rephrase.  And I chew.  And did I mention I’ve been in bed unable to move for about a week now????

I don’t necessarily see these things as political, although they are all happening in politics today (in the USA, anyway).  I think the reason I cannot see them this way is because I worked in Mental Health for 25+ years.  Everyone says we have a mental health problem in this country and I do agree.  Usually, this is mentioned in the area of gun violence.  And we have had that this week, too.   However, I don’t think we will be debating that, as there were not “enough” killed to make it a “mass” shooting “event.”  Once again, I digress.  Back to the point. One  group I worked with in my career was Special Education.  At the time, (dino. ages) it was a separate school for all the kids who could get along with other kids.  They sent them somewhere so that they could all be together and work out their problems.  We had three classrooms.   Ours were divided by age but I think you could divide them any way you want.  We taught them regular education stuff, like other kids…when we could get them to behave.  When we could get them to respect each other.  When we could get them to listen to each other. When we could get them to take responsibility for their words/actions.  When we could get them to get along with each other.  They did not have to like each other, but they did have to co-exist in a humane manner.  At first, we only had them with their own class, as it was too much to expect them to get along with everyone at one time.  Before they left and went back to their home school, however, they had to get along with a lot more children, so they had to learn to interact with everyone.

This was the hardest and most rewarding job I’ve ever had.  I cannot remember having to breakup so many fights; repair so many broken desks, chairs, walls and people;  call so many parents about behaviors; figure out new and innovate ways to discipline/reward behaviors; and ways to fix myself so I could face another day.  It was a challenge.

A disclaimer:  this blog was not in any way meant to be political.  Sometimes, however, human nature takes over and I cannot help myself.  You, the reader, must judge whether this posts political in nature or just about human nature.  I can not tell anymore.

So I’m chewing folks…

Now, the USA decides to bring one of its own home.  Good thing, right.  The USA trades five bad guys. Bad thing, right.  This was gonna happen at the end of the war anyway, if we follow the Rules.  Anyway, not really my point.  But I’ll state for the record I’m glad he is “home” and I’m glad I’m not paying for the five bad guys anymore.  Knowing this country we will just figure out a way to use a drone on day 366 anyway, since we never could prosecute them for anything.

Ok, back to my point, I think…

~ Why, with all the “traceable” electronics in the world today would someone say/write something and then say/write the opposite, while denying that they ever said/wrote the first thing?

~ Why, are so many people denouncing one man for something he MIGHT have done, when there were a RECORDED 20,000 men who did the same thing in WWII?

~ Why, are the “leaders” of the USA allowing the Taliban to create the divisions in this country that it wants to see?

~ Why are there so many people concerned with making sure they do the opposite of what the other guy wants, even if it is the same thing they wanted the day before?

I’m still chewing….

I’m seeing some parallels here: 3 classrooms=senate, house, white house;  I want to do that until you are doing it, then I think it is a horrible thing to do;   I did not do that, somebody else wrote that on there, that wasn’t me; I will never do what he wants, I hate him (even if I wanted to do it 2 minutes ago).

You get the picture.  There are adult men and women acting like Behavior Disordered children.  I know that is not PC, but neither are they.  And I don’t have to be PC cause this is not about politics.  Did I mention the school was for 5-10 year olds????  Hmmm…..  No one stayed there more than year or two….   Hmmm…..

The only negative is that we can’t put adults in “time out,” we can’t “restrain” them, we can’t “de-redirect” them.   We can, however, “discharge” them, which is what the last resort was at the school.  When there was no hope left for any chance of change.

Okay, this is feeling a little political now….

 

Monday Morning Musings

I haven’t been able to “write” here lately because of my clumsy, accident-prone self.  I didn’t quite make that four-inch step coming into my garage, so the door trapped my foot, took off my shoe and decided I should take a nice hard fall to the concrete floor…with both hands full, of course.  I was having such a fun time, too!

My three kids watching a video!

My three kids watching a video!

My three fur-babies very generously graced me with flowers and potting soil for Mother’s Day, so I was planting them in hanging baskets and planters, so I could display them for the summer.  I was just finishing up, when I took the nose dive into the concrete floor.  I guessing it was a good thing I was almost done! Of course, the plant I was carrying at the time did not fare so well…although while I was laying on the concrete, I did put the soil and the plant back into the now-cracked pot.  I figured I couldn’t get up right away, so I might as well do something useful!  I also assessed my “body” for any damage while I layer there.  It seemed my knee took the brunt of the fall, as I couldn’t use my hands to help.  At least it was the same knee that has already had four surgeries, I thought as I laid there.  As I slowly got up, I realized I was correct, the knee hurt A LOT!  But I looked outside an all the plants I had loving re-potted were sitting in the hot sun and had not been watered yet.  Yep, I watered them, hung them in the shade and cleaned up my mess THEN, I headed for the shower and the ice pack.  It was in the shower that I discovered that my right hand got messed up too.  Hence, I could not write or type!  It is still sore and hurts after use, however I wanted to write, so here it is. It has been over a week now and while I am feeling better, I know that it is not healed.  I did get x-rays and nothing is broken, Yay!  Of course, they say soft tissue damage, which could be worse than a break, but not in my house!

Of course the stress of all of this has made the Psoriatic Arthritis, Psoriasis, and Rheumatoid Arthritis act up like crazy, which helps nothing.  However, I am blessed to have great nephews who help me out with my yard work and other stuff.  And I have friends who will bring me lunch or cook dinner when I can’t, which is also a blessing!  I hope they all realize how grateful I am to and for them.  I have struggled with relationships since moving home, and I am now at a place where I am learning to just accept everyone where they are.  While this is not always easy, and I am always learning, I am getting better at it.  I am absolutely positive that it has not always been easy for everyone to accept me either!

I realized that writing here is a great stress reducer!  I have found that the ‘sphere is a loving and supportive place.  Bloggers, at least the ones that I have met, are accepting and helping.  I know that I am very new at blogging, and I have not met a lot of people, but my life has never been about quantity; it has always been about quality.  And in that way, I have also been blessed and I have much gratitude for the people in my life I trust.  I digress, again!

Writing is a passion.  It is something that if not done, will fester inside until it becomes so painful that when touched, it just explodes.  I find that this is how it is with me.  I have developed a need to write.  Before it was a desire, a want, a something I’d like to do; but now it is something much , much larger.  It is a passion, a driving force.  I find that on days that I am pulled away from my writing, I am becoming resentful.  Not that I don’t want to do the things that are pulling me away, just that I want to write, too!  It is all about balance.  And if I didn’t wear out easily, become so tired and go into the brain fog that comes with these auto-immune dis-eases, I could balance these things much more easily.

I have a passion, I am blessed.  And I am grateful.

I have a goal, I am blessed.  And I am grateful.

I have the tools, I am blessed. And I am grateful.

I have loving support, I am blessed.  And I am grateful.

I have the ability, I am blessed. And I am grateful.

Now to get on with it…

Changing Focus

I did not write last week, which means it was the first week that I did not make my goal.

Yesterday, I found out I have another infection, which is common with Rheumatoid Arthritis and Psoriatic Arthritis, even if this one is a bit more serious.

The curious thing about both of these things:  neither of them has caused me to want quit.  That would be my usual response.  If I set a goal for myself and I do not meet it, I immediately see it as failure and I move on to the next thing.  Hence, blogging would be history for me at this point.  Yet, here I am wanting to create another post.  And the health thing would have caused me to curl up in a ball and start my own, private pity party.  Not today though. Interesting. Even to me.

When I woke up this morning, I had to do my usual, “what day of the week is this,” routine.  It’s hard to keep track sometimes.  Then, instead of thinking,”what am I going to do today,” my thoughts ran to; “gosh, I’ve got to get some things done today!”  There is always a list, no matter how “quiet” you think your life is, there is always a list.  Maybe if I didn’t have a house, or if I didn’t have dogs, or I didn’t have… put in anything you’d like, but then I’d have to add, maybe if I wasn’t alive!

I recently read Anna Quindlen’s book “A Short Guide to a Happy Life.”  It actually started as a commencement address she was to give at Villanova University (they canceled it because of protests).  As of my first reading of the book, I think these things change as we reread things, the premise was: In order to have happiness you had to have a life! Seems like a pretty straightforward idea, until I thought about it and realized that a lot of my depression centered around my not having a life.  Oh, I live.  And considering everything, I live in a blessed way.  But to have a life, one must live differently.

There will always be limitations that I will have to deal with,  just as everyone does.  Financial, physical, emotional, spiritual, psychological, the list could go on and on.  Everyone has them.  I am no different from anyone else.  I just have to decide that I can have a life even though I can’t do all the things I might want to do.  I have to find those things that I can do, to make a life; to find my happiness.  No one can help me be happy, nor can anyone help me to make a life (although there have been a few who have helped me to live recently).  I have to own my life and my happiness; I have to take responsibility for it.  I have to stop looking back and wondering “why,” and start looking forward and thinking “WOW!”  I have to realign my lens, so that I can focus more clearly on what is in front of me and around me now. I have never seen a picture dated today but taken of something that happened in the past. Pictures of the past are always faded with time.

Will a change in focus be easy? Probably not all the time, but I am going to give it a valiant try!  I have learned in the past few weeks that focusing on what you want, does not make it happen; focusing on what you have, tends to bring it closer to you.  Lamenting what you have lost only brings more pain; while recognizing all the beauty that is around you, brings more joy.

I am back on track with my goal of writing a blog once a week and I will not quit just because I missed a week.  After all, I have pretty nasty infection that was not being treated until yesterday, I think I can cut myself some slack on that one.  Another thing I never did before! Hmmm……. And the infection will heal and I will go back to dealing with the Rheumatoid and Psoriatic Arthritis again, without the infection.  It will be okay.

Most importantly I will follow “A Short Guide to a Happy Life” and go out and find one, just as soon as this infection clears up and I can.  And then I will be able to say “WOW!”

Walking on a Tightrope

I wasn’t at all sure that I wanted to share this, yet somehow not sharing takes away from the essence of what I want this blog to be: an authentic look at life, the way I see it, so that it can create discussion and thought for those who read it.  I’ve thought about adding humor to it, however I find that humor is something that escapes me on most days.  It is not that I am avoiding humor, for I do look for it always, I just don’t find really funny things in my everyday life.  So for explanations sake here goes: I have Psoriatic Arthritis, Rheumatoid Arthritis and Osteoarthritis, Hypoadrenalism and Hemiplegic Migraines.  Lots of fancy words! I can sum it all up very succinctly: there are many days when life just sucks! Balancing the medications, I think I am up to 15 or so, with the symptoms and side effects is a full-time job; and yes, you got it, I can’t work.  At least not at anything that provides an income.  My “job” is battling disease which involves my immune system attacking my body to destroy it…not only my joints but my organs also.  To do this, I take medications that cause cancer and can kill me in other ways.  What a trade off! Yet it is the only way I can live, as the pain is way too intense otherwise.  Of course, the medications for the auto-immune diseases, Rheumatoid and Psoriatic Arthritis, have caused other diseases, like hypoadrenalism, and have made that seem like a larger issue than what I had when I started! It all gets very complicated and confusing. I will talk more about this as I continue to post, as it is an ongoing saga.

I try to stay positive. I try to say that these diseases will not define who I am or what I can do.  Yet I know in my head and my heart that they do each and every day.  Maybe this is why the humor is hard to find and why I have such a difficult time being authentic, the difference between how I see myself–capable and desiring–is very different from my reality–full of disease and unable to do the things I want. How do I find authenticity in this? I have tried to deny the diseased part and think of myself as only capable, however this leads to more physical pain as I overdo.  I have tried to accept the diseased part and give myself allowances for it, however this leads to more depression as I do not want to be diseased.  Many days, ok every day, I walk this tight rope hoping that I don’t fall off, as I don’t want to fall into the pit of depression.  Maybe this is why I cannot find humor, I am using all my energy to stay on the tightrope.  It takes a lot of concentration to stay up here, there is little left for anything else. Maybe this is why I am so tired all time…oh yeah, there is also this disease my body is fighting.  If only it was as easy as it looks on TV…