Being me really pisses me off

I’m going to tell you the truth: I am really pissed off.

I am pissed that my body hates me, that I can no longer eat sweets, or fries, or bread, that I can’t control the tremors in my hands, that my mind doesn’t work the way it should anymore.  I am pissed that I am no longer the person I used to be, that my looming unemployment is doubling frightening because I have so many limitations, that no matter what I can’t seem to get all of my illnesses in check at the same time.

I am just pissed.  And there’s nothing I can do about it any of it. I know I need to accept who I am and find a way to see the good in myself and my life.  But what I really want to do is throw an epic temper tantrum and then hide in my bed under the covers.

Today I just don’t know how to pretend to be “normal” because today I want to answer honestly when someone asks how I am.  I want to spew the truth and tell everyone what is like to live with a chronic illness (or three, in my case) that controls your life.

But I can’t. I know I have to function, I have to say “I’m fine,” I have to find a way to make peace with myself.  But wow, I am pissed today.

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Figuring Out My Life

Damn. It’s been awhile.  I am not even going to try to write about everything that’s happened since I last posted.  But here are some highlights:

  • started and stopped various medications
  • developed tremors and significant memory so added a neurologist to my roster of drs
  • had several elevated liver function tests so added a GI specialist to my roster of drs
  • lost my appetite almost completely and developed severe sensitivities to lots of foods (sugar, white flour, dairy, etc)
  • got super discouraged and started seeing a counselor
  • got laid off (I work until June, though)
  • started freaking out about my future

So here we are.  I don’t know what to do with my life, or I guess specifically I don’t know what I can do with my life. So much of my day to day life is defined by being “sick”, and my current job has actually been really awesome in accommodating my bad days.  I don’t know how I can go in to a new job, knowing that my mind isn’t what it used to be, that my body will fail me on a regular basis, that my limitations are sometimes overwhelming.  And yet, I know I am not sick enough to stop working altogether or to be on disability.  It’s like I’m functionally dysfunctional.

I have been trying to think about what I want to do if I were healthy, and I am trying very hard to talk myself into following that path instead of limiting myself.  I know that restricting my life so much puts me in a little tiny box, and I don’t want that.  But I also know that I can’t live my life like I am healthy.

I wish I knew what to do!  I suppose that’s where therapy should help.  If you have any suggestions on how to get past this mental road block as I figure out my life, I’d love to hear them!

On another note, my best friend told me about a conference that I am super excited about (she may be a speaker!), and I am wishing there were a local group for this organization.  https://www.arthritisintrospective.org/next-conference looks like it’s going to have a lot of really helpful information, and since it’s actually close to where I live I am going to try to figure out how to go.  Any of you out there going?

I’m off to nap– it was infusion day and I’m wiped!

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses- crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone- I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

F’ing Winter

I have been really fortunate so far this winter.  It’s been fairly mild- not too many super cold days, very little snow.  Which, of course, means very little weather related pain.  This week I have been feeling progressively crappy. I chalked it up to having my period and not walking enough (have I mentioned that I have found a definite link between how much I walk and how I feel?).  Anyway, I’ve been chugging along, assuming that it would pass.

Last night it snowed, our first actual snow (snow less than inch isn’t actual snow when you live in Wisconsin).  We have a couple of inches on the ground, very cold temperatures.  And my body just….hurts.  L asked me if my joints were hurting and I answered that my hips hurt, and my back hurts, and my hands hurt.  Then I stopped and said, “So, yes, my joints hurt.”  It took me actually adding up all the pains to put it together in my head that yes, I am having a very bad day.  In the back of my head, a little voice is saying “Be prepared for a flare.”  I have been so lucky this winter, these last several months actually, to have been getting progressively better, to be responding to treatment.  I have been so lucky, and I have known it.  So now on this bad day, I am scared.  Could this be more than one bad day?  That’s one of the many things I hate about chronic illness- the fear.

So today, I gave into feeling crappy and didn’t go into work.  I am alternating walking around my house and wrapping myself in heat through my heating pad and my heated throw blanket.  I am drinking lots of water.  I am trying not to feel stress. I am stretching, as my physical therapist has shown me.  I am trying to do all the things I can do to stop the bad day in its tracks.  But none of that prevents the fear when I look down at my hands and see the red joints, which has been gone so long I had forgotten their ugliness.

F’ing winter.  I can’t wait for spring.

One Step Forward, Two Steps Back

Even though I know that life with chronic illness is a series of ups and downs, a whole lot of trial and error.  I know this.  But, I let myself lose sight of this as a process.

The last couple of weeks, I had been feeling a lot better.  I was able to walk more, to use my body more.  I started cleaning around the house (the kind of cleaning that ends with big garbage bags of unneeded stuff).  I felt good.  Not great, not pain free, but I felt decently good.

Last Saturday I started my prednisone taper, with the help of my acupuncturist.  The first day was awful- I was nauseous, achy, miserable.  But after the first day, things started to be ok, and by mid-week, my taper withdrawal effects seemed to be pretty much over.  I was psyched.  I started wondering if I could actually move down to the next level (5 mg) sooner than next month.

And then the pain and swelling started.  First in my hands, which were stiffer than they had been.  Then, I noticed my feet were swollen. But hey- I can handle a bit of swelling.  No problem.

Then yesterday, the horrible pain started.  My shoulders and elbows hurt when I moved (though acupuncture helped those); my hips hurt when I walked.  There’s a stabbing pain in my foot.  This is a problem.

Because I know that swelling in my joints means that things are not where they need to be, means that there may be permanent joint damage in the works, I reluctantly emailed my doctor.  I told her about the pain and swelling, that even though I know some of it is related to pms, there is more pain and swelling than there should be; I also added that I really want off the prednisone.  Is there something else we can do, I asked?

Her answer: increase the prednisone back to the 15 mg until my pms pain is over.  And increase the MTX, from 15 to 20 mg a week.

I know this is all a process.  I know that this is normal.  But I can’t help but feel like I went backwards. Taking the extra prednisone this morning, I am just so discouraged.  At the same time, I am willing to risk the moon face and weight gain, if it means being able to function again.

So I guess we’ll see.  I’ll wait a bit and then try to taper again.  I’ll hope for the best with the MTX dosage increase (please, don’t let the nausea also increase!).  We’ll see where it goes, and hope that we keep moving forward.

World Autoimmune Arthritis Day

Tomorrow is World Autoimmune Arthritis Day!  For anyone who doesn’t know about it, there is a virtual conference this weekend hosted by a whole bunch of autoimmune arthritis peeps.  Here’s the link: http://worldautoimmunearthritisday.org/event/

I found several interesting articles already and there are going to be a bunch of presentations as well.  From what I understand most of the presentations will be accessible for a couple of days so you don’t have to watch them at their original air time.

Why is World Autoimmune Arthritis Day important?  Awareness.  Do most people even know what autoimmune arthritis means?  (It’s a  term that encompasses a bunch of different diseases- lupus, RA, spondylitis, and a bunch more. )  I’m excited about the conference because it is bringing together a bunch of information from a variety of sources and putting it in one easy to access place.  I love being able to find information easily and the amount of time I spend researching is a bit crazy.

Anyway, that’s it for today.  Unless I am going to whine about having a cold and not being able to sleep.  Or about my hair falling out.  Or about the new swelling in my ankle.  Or… well, that’s it for today.  Hope everyone has a good weekend!

Good Days and Bad Days

We have good days and bad days.  All of us.  I didn’t think much of them when I was well.  It simply was either a good or bad day, and I knew the bad days would pass and I would have a better day tomorrow or maybe the next day.

It’s all different now.

When you have a chronic illness, the bad days are the norm.  There are, of course, levels of badness.  There are the normal bad days that pass as average to us.  There are the really bad days which mean we have to stay in bed all day.  But, honestly, most days are some level of bad.  Sure, they aren’t all miserable and horrible.  They are just days when our bodies hurt.  When our functioning is compromised by pain or disability.

Yesterday, I had a good day.

It was maybe my first really good day since I started getting sick.  It was a damned good day.  I had very little pain.  I was high-functioning.  I was able to do things like clean out my closet, go through old clothes and sort out for Goodwill, take care of general household chores.  I was able to do things.

It was pretty great, honestly.  I had to try to pace myself but it was hard not to try to cram everything into that good day.  After all, I don’t get many so I figured I should take advantage.  By the end of the day I was tired, worn out, achy.  But no pain pills yesterday, so that was pretty great, too.

Today, I woke up and I didn’t feel too bad.  I thought- hey, cool, maybe another good day.  And then I got out of bed and could barely walk.

Today, I am having a bad day.

And it sucks, after having experienced a good day yesterday.  It sucks.  But at least now I know a good day is possible.  I know it might happen again.  So, today, the thing that can get me through the bad day, is that the little possibility; what has to get me through all of this is hope.

When Physical Therapy Isn’t Therapeutic

It is safe to say that my physical therapy office is not going to be on my team.

I liked my original physical therapist (K) at my first visit.  She seemed helpful, interested in my well-being, ready to help me gain some strength and eliminate some of my pain.  I was pretty optimistic after that first visit, honestly. Which is maybe why I’m bummed now.

At second visit, I liked K a bit less.  She spent most of her time we were together doing paperwork while I was on the tens unit or on the recumbent elliptical (which is a good machine for people like me).  But we did a few strengthening exercises and she sent me home with homework (three of the exercises twice a day ten times each).

So, today, third visit, I am not having a good day, pain-wise.  I didn’t want to go.  Couldn’t find convenient parking.  Walk in and K says, “I can’t see you today, so A will see you.”  Fine.

But A doesn’t know anything about me.  First few minutes of session is her asking me questions I answered on first visit.  Ok, fine.  I can deal with that, I guess.  She puts me on a bike-type machine which was much less friendly to my joints.  Fine. I can deal, I guess.

But here’s where I start to get pissed.  She says “So K went over bio-mechanics with you last time, right?”  Me: “What do you mean?”  A: “Like the right way to stand, the best way to sleep, ways to get up.”  Me: “No.  But I would really like to know those things.”

Evidently K’s notes indicated we covered those things.  We didn’t.  I went to physical therapy partly for that information, and I am so upset that my care is being compromised because K was lazy and took the easy way out by writing that she had covered something she hadn’t.   Lucky for me, A did go over some of those things (unfortunately no new information).  A also add some abdominal exercises to my routine, which I am happy about.

But then at the end, I am confused again.  She recommended I do my exercises “Maybe every other day.”  K told me twice a day.  Which is it?

Physical therapy’s purpose is to help me, right?  But how is helping to get inconsistent care?  To get inconsistent information?  To get therapist’s who don’t actually give a shit about my outcomes?

Arg.

I have three sessions left that my insurance will cover.  After that, I guess I need to consider whether I can afford to pay for my own physical therapy at a decent therapist.

Arg again!

Nothing is at all the same

Today’s blog is going to be random, mostly because I haven’t blogged in two days and I have a whole bunch of little things I want to say.

First up: my hair is starting to fall out.  Thanks, MTX!

This was mother’s day weekend. I dislike mother’s day, partly because of my own  very challenging relationship (or non-relationship) with my mother. I could bore you with all the reasons mother’s day is awkward and not my favorite, but I won’t.  Instead I’ll get to my point (for once!).  My middle child gave me a frame with a poem he wrote at school.  It’s called “My Mother” and I am sure the assignment was to write some poem to honor your mom.  Anyway, his starts with “I don’t see you on weekends or during summer vacations, you are always at work. But I love you anyway.”

Ouch!  (I should point out that I have only started to always be at work the last two years so he had eight years with me being primarily at home, and “always” at work means I am home by six).  Anyway- him saying that reminded me how grateful I have been the last few weeks to have so much extra time with my kids.  I have been home for homework and snack time; I have been around to talk to them about their day.  So, yeah, it’s totally sucked to be sick, but it’s been very nice to be home more.  Going forward I feel like I need to find a healthier balance between work and home.  I don’t want to miss out on all the good stuff with my kids, and I definitely don’t want their memories of me to be as someone who was “always at work.”  Of course, that seems less likely now anyway, with my broken body telling me to chill out.

My other interesting weekend tidbit: I went to the theatre where I work so my daughter could see the children’s theatre performance.  It was a challenge getting there: my partner had to drive us, I had to take pain medication before we left, etc.  When we got there, I was nauseous and light-headed (thanks again MTX!), and it became evident pretty quickly that I needed to use my cane.  So, I hobbled into work with my cane, and ran into both my boss and my boss’ boss.  It was hard for me.  Part of me is so embarrassed  that I can’t be at work, that I am so broken.  Part of me was embarrassed I had to use my cane in front of my co-workers.  It was hard to be back there, to see things that are different that I didn’t have a part of, to meet a new employee that I didn’t help train, to be an “outsider” at the place where I have spent so much time and energy.  It was great to see everyone, but at the same time, I was so uncertain of my role there, of their opinion of me, of everything.  It was all just strange.

I guess some of it comes down to this: I am different now, both physically and emotionally.  I have a different perspective on everything.  I have different priorities.  I think differently.  Every choice I make now is based on my body.  I am no longer the person I was, but looking at me, the only difference is a cane, a slower walk, more deliberate movement.  I look the same, essentially, but nothing is at all the same.

Even my hair.  Maybe if it falls out enough I’ll look different enough to signal the changes to the people around me.  I hope not.  But I guess I need to find a bright side right?   If I find the bright side (like time with my kids), maybe I can find some peace with this whole new normal where nothing is the same.  Peace would be nice.

 

Mornings=Pain

I feel like I should warn you: I’m in a bad mood.

I really hate morning.  I was never a morning person, but now mornings are so awful, so painful, that I just absolutely dread them.  For whatever reason, the first two hours of the day, so many parts of my body hurt, parts that don’t hurt any other time, from head to toe I hurt.  Oh, I am always pretty sure it’ll dwindle within a couple of hours, when the prednisone, naproxen and Lyrica hit.  Til then I am miserable.

It’s hard to deal with mornings when you are in this much pain.

Add to that, no one in my house seems to get it.  I mean, how can they?  Until you have experienced this kind of pain on a consistent basis you can’t really imagine it.  So the uninitiated, the normal people, can try but the most they can come up with is a stubbed toe or maybe even the time they broke their arm.  After all, that kind of pain is bad, no one would quibble with that.  But I don’t think that’s a good comparison.  I am not saying my pain is worse than that, but that it is different.  Having a continual amount of high pain is different, is wearing on the mind and body, in a way that short-term pain just isn’t.  A big chunk of why this pain is so awful is the knowledge that it will be with me forever, that I may have breaks of days or weeks, but this pain is mine.

So no one in my house gets it, and that’s understandable.  And I try not to lash out.  I try hard not to tell everyone to leave me the hell alone until at least nine.  Most days I succeed.  But wow, it’s hard.

Today, it’s just a lot to deal with.  I hurt all over (in case you’re wondering my pain right now is probably around a 6-7 from head to toe), and I have a full day ahead of me, including physical therapy, and all of that just seems like way too much to handle. It feels like too much to expect of me to handle kid pick up, acupuncture, physical therapy, dishes, dinner.  It feels like too much to expect me to keep a positive attitude on top of all of that, to listen sympathetically as everyone else expresses their frustrations which seem so silly to me.  I know I am being unfair, and I don’t care.  I know everyone’s feelings are equally important, but today I just don’t want to do it.  I don’t want to be kind and supportive and understanding.  Instead, I want to take pain medication and hide.  I want someone to take care of me, to be kind and supportive and understanding of me.

But…that’s not the way it goes.  So, I need to pull myself together, ignore the pain until it becomes more tolerable, find some energy to go out and manage my day.  I need to find some damned spoons, because it’s just not going to work if I am out before 8 am.

Yeah, I hate mornings.  And pain.  And pain in the mornings.  But what can you do?  This is my life now, so I guess I have to make the best of it.

Please tell me I am not the only one who feels this way!