Tag Archives: Rheumatoid 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.

 

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A Three Year Journey, Never Intended

Three years I began a New Life.  Or should I say I began a New Journey in my Life.  A New Journey sounds so much better and more intriguing, wouldn’t you agree?  I would assume it depends on whether it is a Journey one intended to take.

I went home for lunch on a Thursday afternoon, it was August 5, 2011.  I’d been having “episodes” of unknown origin, but they were mimicking TIA’s or mini-strokes.  I had been to the hospital ER many, many times; had more CT scans of my head than I probably should have in my lifetime; and, had freaked out my friends, my co-workers and myself more than once.  On this day, instead of going to the ER, I called my doctor.  I thought that was a wise move, since I was tired of wasting everyone’s time and resources to be told that they didn’t know what was wrong.  The doctor told me I had to see a neurologist and until I did, no more work.  Little did I know that it would take a year, and my insistence at seeing a third neurologist to get a diagnosis and a solution.  Of course, by this time, I had no job, which meant I had to move because I could no longer afford where I was living.  Of course this provoked just a little (sarcasm here) stress in my life, which caused the RA to go out of control.   Additionally, I lost two of my main supports, which were my old neighbors.  I had not planned on that.  I’ve never returned to work and my health is such now, that it seems unlikely I ever will.  Although, I would like nothing better.

There are many details, twists and turns that life has taken throughout these past three years, far too many to mention here.  The life lessons are always the most important; the demons we struggle with and overcome; the challenges we face and win; and the realization of who and what really matters.  I know that these will continue throughout my life, I hope to get better at dealing with them and at letting go of the little things and the things I cannot change.  I am finding that, unfortunately, that also means letting go of people.  There are people in my life who let me down to the point that I can never trust them again; who have shown me their true character and, not that I am perfect, it is cruel; and, there are those who have, at least in their own honesty, walked away from me.  This has been the hardest part of my journey during the past three years.  Or maybe it has been the hurt I have caused others, for I know I have.  I have let people down in ways for which I have many regrets.  I have tried to make amends where possible and apologies when I can.  And tried to do it better the next time.  I guess that is all to do.

It has been an interesting journey.  I have learned a lot about myself, my world and the people in my world.  I have been to the depths of depression and have had wonderful friends to pull me back up.  I have had major health crises that without my friends I would literally not have survived.  And I have had triumphs that my friends were with me to celebrate and share.  What have I learned? That I have the BEST FRIENDS, that I am BLESSED they are in my life; that no matter how dark or lonely some days may get, they will ALWAYS be there, just one phone call away.  I have also learned that I can handle much more than I thought I could, and I really thought I was pretty strong before.  I’ve learned to be more independent and to ask for help only when it is truly needed.  I’ve learned to let the little things go and not stress about them as much.  I’ve learned to be GRATEFUL for all that I have, for it is so much!  I’m learning to ENJOY EACH MOMENT because it is all I really have and to stop expecting things to be a certain way.  It appears that when I can release my expectations, I am pleasantly surprised by something new!  The biggest thing I’ve learned about myself is that I have a lot to learn!  This is good, for life will continue with its twists and turns and how boring it would be without them.

 

 

 

 

 

 

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!

 

 

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!”

Expectations and Arthritis

I like to ponder. Today’s ponder: Why can I not “Just Be,” live in the moment and let go of expectations?  It seems no matter how hard I try, I continue to have expectations of myself, other people, situations, and even of the weather. And sometimes my expectations are met and sometimes far exceeded. And there are other times, like today, that they will be let down once again. It’s just a silly little thing, a walk in the park with the dogs and some friends that won’t be able to happen because of the weather and how it affects the joints when one has arthritis. It doesn’t seem to matter what kind of arthritis, just arthritis. Yesterday, It was 50° and sunny, tomorrow the forecast is for 50° and sunny, And yet today it is in the 30s with clouds and a chance of rain and snow. What that does to the joints just amazes me. And no matter how I try to ignore it, tell it to go away or take pain meds to mask it, it just stays with me. And I hate, HATE complaining! Those who know me well can see it in my eyes even when I try to smile through it so as not to ruin the party or anyone else’s good time, so I try real hard to just be alone if the pain gets too bad. But today that won’t work, as you see I have friends coming in town and I’d planned on having time to take all the dogs, my three and their one, to the park for a walk. Then come back relax, laugh and enjoy. So now, I need to figure out a way to make at least the second part happen despite the pain. And I can do that, I just get so tired sometimes of having to work so hard at it!

And on another subject, also related to joint and arthritis pain and expectations, I have discovered that my Dragon Dictation no longer works with the new update of the Mac operating system. Now that’s not really good news, however I did discover that Mac has its own dictating program built in to its operating system! One has to be careful as I found out if you choose the wrong option, everything you say AND your contact list will be sent to Apple for them to translate to text and then sent back to you (they also store all your information). I just don’t think Apple should have all of my information, so I chose not to do that. I am finding as I dictate this, that I will have a lot of cleanup to do, which I did not have to do with Dragon Dictation. So I’m going to test it out and see if it will be worth it to use the dictation program. If it is, it will help with my writing quite a bit, as typing is one reason why I don’t write as often as I’d like. It is kind of amazing as I look at the word count. I usually have a hard time typing this many words but I don’t seem to have any trouble speaking this many words, does that mean I talk too much? Nah, couldn’t be! If you could see all the mistakes that the dictation is making this would be a very comical post! However, the OCD part of me would never let this post go out the way it is currently displayed. So I will fix it, after all I am a fixer! Another fun thing about having rheumatoid arthritis, the things that you can fix become less and less and your frustration about that becomes greater and greater. 

So I’m not really sure how I will plan my day for friends to spend time, but I’m sure that we will figure it out and have fun. For that is what it is truly about! It doesn’t really matter what you do; it really matters that you’re together, that you care and that you’re willing to take the time to be there. So that is really what today is about: not the activity, not the food, not the drink; just the friendship, the being there.  Oh yeah…there is that theme of the year thing...Just Be...so I won’t plan my day…I’ll just let it BE!

PS: (Can you have a PS in a blog…well I am, so I guess I can.)  It didn’t take me that long to edit, so it may be worth it. Not sure it will be though if I am writing a lot, like working on the book I am writing.  It would take too much time editing all the capital letters in the wrong places, the words it didn’t translate correctly, like “lettuce” for “let us,” and it kept putting “Matt” in for all kinds of words!  Guess it’s time to call my nephew, Matt! LOL

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…