In in for the long haul…

Today is the last day that I have health insurance.  So I am stocking up on the medications I currently have refills on and I followed up with the doc for the second opinion.

My bloodwork held no surprises.  ANA is still negative, so is all bloodwork looking for lupus.  Only a little bit of abnormalities in my complete blood count (lymphocytes) and with my c-reactive protein and a normal high of my sed rate.

This doc talked to my eye doc and I think to my current rheumatologist.  And I trust this doc, he is probably the best in this field in the area.

The verdict?  I definitely have an autoimmune disease that is attacking my eyes and is acting systemically throughout my body.  The methotrexate is working, (the doc said it saved my sight) as evidenced by my eye doctors peek in my eye and by the lab values.  I still have active disease in my left eye, so the second opinion doc is recommending anti-TNF therapy (I’ll get to that in a minute).  Despite the extensive lab work, no one can say whether it is definitely sarcoid or something else.  There is just no evidence either to rule it out or to solidify the diagnosis.  No one knows why I have increasing joint pain throughout my body.  It could be the disease itself, or the steroids that I have been on for six months weakening my bones.  The second opinion doc also said that I may have this going on for a very long time.  I may be on treatment for many years.  I may never come off of treatment.

His suggestion was to add anti-TNF therapy: Humira.  It is usually a rheumatoid arthritis drug.  It is extremely expensive.  I no longer have insurance after midnight tonight.  Funny, huh? Like $1,900/month expensive.  He also said that the programs that exist for people without insurance will most likely not pay for an “off label” use such as my condition, uveitis/presumed occular sarcoidosis.  Now is the time when I start cussing.  Fan-fucking-tastic.  I can’t afford food, let alone this type of medication.  He is suggesting the Humira to completely stop the inflammation in my eyes and completely stabilize me.

As for returning to a job?  No suggestions there.  He agreed and acknowledged my concerns regarding not just functioning as a hospice nurse, but a nurse in general.  I can’t make judgement calls about my own health, let alone someone else’s.  I can’t guarantee an employer (my current one or a prospective one) that I can be healthy for a set amount of time during any given week.

Let’s take yesterday, for example.  Thursdays are usually good days for me.  The side effects of the methotrexate are usually flushing out of my body.  I can usually tolerate housework, maybe a short run to the grocery store.  Yesterday around 2:30 pm I was hit with a wave of severe pain to all the joints from my left shoulder to my left fingers as well as my left hip.  I’m talking teeth gritting pain.  Being that my husband works second shift, I could not take any medications that would make me drowsy because of my responsibility to take care of Sunshine.  However, she was going to a birthday party for a neighbor (in the middle of the week? yes, I know, thank God for small favors) and she wasn’t due to return til early evening.  So I took a dose of tramadol, I did take a 2 hour nap, and the pain was knocked down from a 9/10 to a 3/10.  I was awake by the time Sunshine came home, and we had “Mama/baby time” where we snuggle in “Mama’s bed” and watch movies.

I was not anticipating that kind of pain.  I do not know where it came from.  I did nothing that could have triggered it.  No excessive typing, I didn’t sleep on it the wrong way, but I usually sleep on my left side.  I didn’t bang it off the wall, which I am prone to do.  Nada.  Just intense pain from my fingers through my shoulders and in my  hip.  Throbbing pain.  For hours.

I can’t promise my time to anyone.  I had to cancel dinner this week with my mom.  I can’t do that with an employer.

I wish I could read books and blog for a living.  Or a health coach.  I could do that.  Set my own schedule. Help people that need direction with health and wellness. Because I have been through this maze, on both sides, it can be scary. 

Positive:  I don’t have anything worse than what I already knew.  And that is stabilizing with the treatment I am currently receiving.

I am going to a baby shower tomorrow.  Nothing like celebrating new life.  I’ll post pics of the decorations I made.  Yes, that could have triggered the pain, but I am right handed, and my right side is fine.  I think the left side of my body just hates me 🙂


Thank you Facebook!!

This sums it up

I saw this floating around on Facebook.

I just had to post it. Some days I just shake my head at the things that come my way. From the stories that my husband has from his college days, to my nursing stories in a very “interesting” ICU and ER, and now to Texas.

Wow. True life is definitely stranger than fiction.

Does it hurt more when you are sick?

I make no secret of the financial hardships that go along with chronic illness.  Unless you are independently wealthy or have a spouse that has a good job with fantastic benefits, you feel it in the pocketbook.

I am doubly unlucky as I was the breadwinner and responsible for all the benefits.  I have been able to keep our benefits going.  Until now.

I received a call this evening from HR.  I owe them a couple grand or my benefits will be terminated immediately.  And rent is due next week.  I am not familiar with social services.  I have no idea how to apply for what, if I would qualify for anything.  I’m terrified that without health insurance, my docs won’t see me and I will go blind.

So I will make phone calls tomorrow.  See which docs will take medicaid, if I can get it.  I have already cut out most specialties, only seeing my eye doc, rheumatologist and PCP (if needed).  I have started tapering off some meds that might not be needed (who needs antidepressants anyway?) and hoarding other ones.  I am so happy I got my second opinion a few weeks ago.  Just waiting on results.  If he recommends another treatment, I just won’t be able to pay for it.

I still have yet to get other screening tests that have been recommended to rule out sarcoid in other parts of my body.  I need an echocardiogram and to follow up with the cardiologist.  I still have runs of tachycardia on a daily basis.  But I can’t afford the coinsurance on the test, nor the copay for the visit.  I still have horrific reflux (probably a result of the prednisone) but can’t afford the procedure to examine my esophagus for damage that would diagnose it as such.  So I occasionally take an over the counter medication that does NOT interact with the chemo.  I cannot afford a GI consult for the occasional bleeding from the other end.  Most likely brought on by the massive amounts of naproxen I was ingesting during the month when I was taking hormonal birth control as an experiment.  I have been told several times by my retinal specialist to see a GI doc, because he sees “bear tracks” on my retina which is indicative of colon issues, but I just can’t afford it.

So until I start vomiting or actively expelling blood in another form or pass out and don’t wake up, those things will be on the backburner.  And I thought the focus was on preventative medicine?

What really hurts is what happened after I got the insurance news.  For the past few months I knew that this was possible.  So I have been looking in to the issue.  As I thought, a person is not eligible for benefits from the government until they are actually without coverage.  So I cannot put myself or my daughter on medicaid until my insurance is officially terminated.  I cannot apply for unemployment until I am officially unemployed.  I cannot apply for other assistance while I still officially make on paper (last year’s income tax returns) what I am supposed to make, even though I haven’t had a paycheck since August.

My mother doesn’t understand that.  At all.  I called her after I received news that the worst case scenario regarding health insurance had happened.  I was looking for her to be my mom.  To comfort me, to help me sort things out, as my husband was at work (he is working seven days a week now).  I was not looking for a handout, and I stated that explicitly. After I told her the situation and explained to her (again) that I couldn’t apply for benefits until it became official, she said “well, I don’t know what to do then.  Cry to your husband, he’s the one who voted for Obama”.

And I hung up.  In tears.

Are you kidding me?  Really?

That hurt.  Bad. Like to the bone, bad.  And I hate crying in front of Sunshine.

I understand that they have helped tremendously.  I heed their advice.  But there are some things that I simply cannot do.  I am not going to lie on government documents because she wants me to.  I can’t make my former husband get a good job and put my daughter on his insurance.  I can’t make the economy better.  I can’t magically wave a wand and get healthy and return to my prior, income-producing self.

This isn’t the first time my mom has been cruel or hurtful.  This is right up her alley.  And I will not expect an apology either.  That’s just not in her nature.  She prides herself on being “brutally honest”.  Emphasis on the “brutal”.  I just think I deserve a little compassion.  Just a tiny little bit.

I’m not in the greatest shape right now.  Qui died this morning.  I’m terrified of my own health condition advancing and dying young like her.  I did the methotrexate last night.  So physically I feel like I’ve been hit by a truck.  Only with vomiting.  And since its the middle of the week, I have Sunshine with me all evening, so I can’t just sleep it off.  (My schedule was thrown off by the pharmacy, they didn’t have the methotrexate when I called in for a refill, I guess they don’t stock poison).

And for fun, lets add some more financial insecurity and a dose of my mother’s biting “advice”.  Gotta love the GOP right?

It is not good to be me right now.  Going to lose myself in literature.

The other side

Dying at 30.  That shakes me to the core.

Another one of my high school classmates is slipping away as I type this.

For Qui

She has battled leukemia for over three years.  But its not the leukemia taking her life, its an infection (e. coli) that gained entrance via a bedsore, and due to her compromised immune status and all the underlying issues, it spread rapidly and caused septic shock.  Now the infection is in her brain and will soon spread to her lungs and heart.  All aggressive treatment has been stopped and they are “making her comfortable”.

I know what all of that means.  I know what is going on right now.  I’m a hospice nurse.

Although I am 1500 miles away, I can feel the pain of the community.  My best friend from childhood, lets call her Pooh, went to see Qui in the hospital yesterday.  Again, I flipped into nurse mode as I prepped her before she went in, what she might see, what she might not see, why Qui may not be getting tube feedings or fluid, why she may be talking funny.

A year ago, I was doing the same thing, only it was my family doing the hospice dance.

My paternal grandfather had a series of unfortunate health events last year.  It was one catastrophe after another.  At 80 years old, he insisted on living alone and living 5 hours away from his kids.  Yes, he had some family nearby, but not the sort that would religiously check on him.

A fall caused a brain bleed and required brain surgery early in the spring.  He came up here for rehab and stayed until late summer.  Then he insisted on returning to his home, and living alone.

He had a massive stroke in October.  Brought on by a completely unnecessary medical procedure.  Luckily, my aunt was staying with him at the time, or who knows when someone would have found him.

They attempted to rehab him from the stroke, but it was futile.

I was the one visiting the day the doc came and suggested hospice.  I called my dad, he called his siblings.  I was there for that meeting.

It is no fun being on the flip side of the hospice coin.  Suddenly, the doctor is giving you the speech that you have given to so many others.  Words like “comfort” and “end of life”.  Suddenly, its real.  You will lose a family member.

I have always thought that hospice was a gift.  You get a chance to say your goodbyes.  You can have “closure” and say all the things you wanted to say before someone passes.  Whereas in sudden death, all of that is left unsaid.  Its not always like that.  In my grandfather’s case, he wasn’t exactly coherent most of the time.  He couldn’t reply to questions, he couldn’t carry on a conversation, and he was extremely confused.

He made it difficult.  He lingered for six weeks.  And in those six weeks I think I aged about five years.  As the family hospice nurse, I was expected to know everything: “can we feed him?”, “can we give him this medication instead?”, “why is he making that face?”, and the worst one “why hasn’t he passed yet?”

He couldn’t eat because the stroke affected his swallowing ability.  Everything he ate dumped directly into his lungs.  But he was confused and thought we were torturing him.  He told family from out of town that we were starving him.  Then we figured out that he didn’t want to “eat”, but just wanted a “taste”.

He pushed my dad and uncle away and doted on my aunt.  That was much like his entire life with his children, but seeing it at end of life was difficult.  I have seen it plenty of times in my patients, but in your own family, broke my heart.

Family I had never met before came in from all over Texas.  I heard stories about my grandfather and grandma, saw pictures.  One second cousin told me that my grandpa was her inspiration to go to college and make a better life for herself.  So many mixed emotions for me.

Working all day with my own patients, trying to juggle texts and phone calls from my family during the day regarding my grandfather, and visiting him at night just took its toll.  I stopped visiting my grandfather so much.

I had said what I needed to say to him prior to a trip I took with Sunshine for her birthday to Disney.  I was at peace.  I figured if he passed while I was away, I would be ok with it.  He didn’t, but after I had made my peace, I visited less frequently.

I saw him the day before he passed away.  By this point, he was sleeping 20 hours per day, essentially a light coma.  He would talk about my grandma being present (she passed in 2004) and smelling her perfume.  At times he thought that I was her and talked about her beauty.  Again, I have seen this many times in patients, but experiencing it from your family is amazing.

When it was time, he declined rapidly.  We received a call from the nursing home that he had an “event”, and he was found with labored breathing during morning rounds.  They felt like this was it.  Using my experience, I did a quick assessment and confirmed their suspicions.  We called his hospice nurse (of course I wasn’t assigned to him).  And everyone who could, made it to his room.  We shared stories about his life.

My head was on his chest when he passed away.

I gave the eulogy at the funeral.

I know what Qui’s family is going through.  I know it too well.  Just sitting there by her bedside, watching each breath, counting respirations.  Looking for any sign that she is slipping away.  The odd sense of anxiety, wishing that it would be over, but not wanting her to go.  I call it the “death watch”.

Qui kept a CaringBridge website to update her MANY friends and family during her battle.  Her last personal entry brought me to tears when she wrote that she knows that she is dying.  I have always wondered how a person can deal with that kind of news.  I worked with terminally ill patients for years, yet I have never asked that kind of question directly.  How can someone process that they will no longer be living?

Facebook is humming, Qui took full advantage of technology to talk about leukemia and bone marrow donation.  She will leave a legacy behind.  So many people learned about cancer, leukemia, bone marrow transplantation because of her.  She will live on.


It has been one hell of a year.

Despite all of the hardships, I know I have plenty to be thankful for this year.

Sunshine.  I am thankful to be her Mommy.  She is my reason to get up and out of bed in the morning.  Literally.  I am forced to push through the pain and fatigue and brain fog  every day to either get her off to school or to make sure she is safe.  I love watching her grow and learn.  She is hilarious and knows how to make me smile and laugh.  I am so incredibly blessed to be her mother.

My husband.  I am so thankful he has chosen me to be his wife.  We have been friends for 15 years.  He is my best friend, my confidant, my lover.  There is nothing that I can’t tell him.  He knows everything about me, and yet still accepts me as I am.  In just the past 5 months, we have gone through a lifetime of hardships, but we have stuck together, leaned on each other, and we are stronger than ever.  And it looks like it will worse before it gets better.  I am so thankful to have such a wonderful man by my side.

My parents.  I was launched.  They launched me off of the home launch pad at age 21.  Yet, every time I stumble, be it with my first illness (c.diff and fibro) and with domestic violence (first husband), they have been there for me to help me stand up again on my own two feet.  They don’t have to do that.  I have seen plenty of friends have some type of situation and have to struggle on their own without any kind of assistance from their families.  I know I’m lucky.  I am so thankful for my parent’s never ending love and support.

My friends.  Yesterday I was extremely anxious over the money situation, my health, the bleak future.  I started texting my best friend who lives up north.  She knows me as well as my husband.  She doesn’t coddle me, she tells it like it is.  She was able to calm me down, help me see the situation as it is, and remind me to take each day as it comes.  Sometimes I need that.  And I am so thankful to have a friend such as her.

I am thankful for this outlet for my feelings and observations.  It needs to go somewhere, and physical writing is more painful than typing for me.  I can express my thoughts more fluidly through writing than with speech.  I’m sure there is a technical name for this, but I can’t remember it.

I am thankful for the support and comments some of you have left.  It is very difficult dealing with this disease.  I don’t know what to expect day in and day out.  I am trying to minimize the effect on my family, but the loss of my income as the breadwinner is horrific.

I don’t know what the next year will bring, in terms of my health, finances, family.  But right now I am very thankful to even be alive and intact with all senses.

I will take a deep breath, enjoy my entire extended family tomorrow, and enjoy Sunshine the rest of the weekend.

Happy Thanksgiving y’all!!

Recharging the batteries

I had a wonderful extended weekend.  The hill country of Texas is absolutely beautiful.  The weather was perfect.  Not too warm, not cold.  No rain.  Just what my family needed.

The four hour car ride wasn’t optimal, but I survived.  We were so far out in the boonies that it couldn’t be found on GPS and only back roads could be used to find it.  No cell coverage either.  My kind of place.

It wasn’t so out there that it was uncomfortable.  Running, filtered water, electricity, heat.  True camping would be out of the question for me.  There is no way I’m sleeping on the ground with my joints the way they are.  Forget about peeing in the woods, I’m so clumsy I probably would have preferred adult diapers.

My mom wanted to see the leaves turn color.  We used to live up north. Where we live now, you might see one or two trees with a color change.  Apparently in certain areas of Texas, there is an abundance of maple trees, which obviously turn color in cooler weather.  That is one of the things I do miss about being in the north east.  The change of seasons.

So we went to Lost Maples natural area to hike.  This place was packed.  In PA, trees change everywhere, on every street corner, and its free to see.  Here, they charge to see it, and people stand in line and pay for the privledge.   It was beautiful.  The combination of the rugged Texas hill country and the color of the leaves was majestic.

With a good balance of rest and activity, I managed to hike a tame trail of 0.8 miles.  I was so happy that I could do it!!  I know that the combination of it being Friday (and that the methotrexate was out of my system), and that I have been regularly medicating for pain every morning regardless of symptoms helped as well.

It just felt really good to be out in nature, with my family, and to be able to participate fully in a physical activity.

I was able to go out to lunch afterward too.  It felt like a normal day.  I felt like a normal person.

But I crashed when we got back to the cabin and needed a three hour nap. I was able to get up in time for a flame cooked dinner and to stay up late by the fire and enjoy my husband and my dad and their stories.

I declined another hike the next day, I was hurting pretty bad, but I did have a wonderful day with my mom window shopping in the “Cowboy Capital of the World” 30 miles away in Bandera.  She is starting to understand my limitations, and I was able to sit down and take a break when I needed it.  She observed first hand how I just “shut down” like a computer when I get hit with fatigue and need to rest for about 20 min or so to “power back up”.

We talked about my current issues and past issues.  She seems to understand me more.  We will always have our differences, what mother and daughter don’t?  But its nice to know that we are getting along more.  I no longer feel that I am being accused of being lazy or not trying hard enough to get better.

I don’t know how I would feel if I were her, I hate it when my daughter is sick.  But I am in charge of my daughter’s healthcare.  And with Sunshine, everything has been cut and dry: a clear diagnosis and treatment.  For my mom, she has no say in what I do with my body, and with the things I currently have, it is quite nebulous.  She even said as much when we went out for pie this past weekend.  She said something like “I kind of wish you had something visible, something like your leg cut open, because then its easy, we just sew you up and you are fixed”.

My mom tends to look for “cures” for me.  Anytime she runs in to someone as a patient or in public that has a diagnosis like mine, she finds out what they are doing to help and thinks that it will cure me.  With the fibro, it was “oil of oregano”.  I couldn’t find credible evidence to warrant me trying it.  And once I moved to Texas, the fibro was on the back burner.  Now she wants me to try “white gold drops”.  She wants me off the methotrexate and on these drops.

As much as I hate the methotrexate, as far as I know, it is the medication that is keeping me from going blind right now.  It isn’t the most optimal existence for me right now, but my eyes are better.  I just have really bad side effects that keep me from working as I did in the past.  And I can’t work at any job for two or three days after I take a dose.

There I go getting negative again.  Ok.  Focus on the positive.  I had a wonderful weekend with my family.  My daughter loved hiking.  I can tolerate it in small amounts. Everyone was incredibly supportive.  I think I got closer to my mom.

Overall, much needed, I am so grateful to my parents for removing us from the city and getting us away from it all..

Getting away from it all..

And we’re off…

My wonderful parents have rented a cabin in the woods for the weekend and were kind enough to invite my family as well.  All we have to bring is our clothes and ourselves.

My parents think that a weekend without worrying about bills, medical stuff, cell phones, TV etc will help us clear our heads heading into the holiday season.  I’m sure it will help.

I’m holding the methotrexate until we get back, so I can fully enjoy my family.

Who knows, maybe I’ll be able to take an extended walk in the woods?

Hoping for the best..

The second opinion..

I finally had my appointment with my aunt’s rheumatologist.  He has been her doc for 20+ years.  He has also been the doc of a family friend for years as well.  Both of these ladies have RA, my aunt also has lupus.

It’s tricky doing the second opinion thing.  I still like my current rheumatologist, she is friendly, thorough, her office is close to my apartment.  I just want to make sure all bases are covered.  I want to make sure that this is what it is, as other physicians have come to different conclusions as to my diagnosis.  I also want to make sure that methotrexate is the best plan of care.

I should write out my entire medical history and just hand it to doctors instead of trying to remember all of this shit.  If it wasn’t for my husband, I would have left out significant parts of my history.  Sometimes I forget what I’ve been through the last seven years.  C.diff, dx with fibro, massive ear infections, now this saga.

All I want is answers.  Exactly what is going on with my immune system and a better plan of care that doesn’t leave me feeling like crap.

Yes, my main complaint that drove me to seek care is resolving.  My eyes have substantially improved.  But I am unable to work as a nurse.  The brain fog, word finding issues, stuttering, fatigue and increased pain have made working as I used to extremely difficult.

The pain.  Oh the pain.  It has significantly increased in the past two weeks.  Knees, hips, wrists, fingers.  Low back for the past two days.  I did figure out it was my new (to me) couch.  One of the couches has a recliner built in.  When I lie down length wise, the mechanism for the recliner lines up perfectly with my lower back.  I was in agony yesterday.

Better today.  Only sore.

So after a lengthy discussion over my colorful health history, the new doc ordered labs and said that I should continue with my meds until he has further information.

I guess that is all I can hope for right now.

My husband made a good point during the lengthy discussion.  I never seem to heal completely after a blow to my body. Each battle with an infection or injury has stayed with me or weakened me significantly.  The c.diff nearly killed me.  I have never been the same since.  Last year I had a concussion.  I still have vertigo.  My ear drum ruptured from an infection last year.  Added to the vertigo.

Agh!  I need to quit thinking about this.

A case of the “Mondays”

Feeling like this today..

It’s not that I’m on the corporate “Monday” schedule like I used to be. I’m just not feeling too fantastic this today.

Methotrexate on Friday evening (well, early Saturday morning).  Vegetated ALL DAY Saturday.  And yesterday I felt  the effects of the methotrexate, but I kinda pushed it.  Sunshine returned from Daisy camp with my mom and we spent almost the entire day at my parent’s house.

I actually cooked dinner for everyone yesterday.  It wasn’t a 7-course feast, but it was a decent crock pot meal.  And it was edible, and actually good, and no one has died from food poisoning.  Yet.

So, again.  Here I am on a Monday, feeling like a train has hit me.  This is starting to be a pattern.  Veg after the med, feel ok the 2nd day and push it, feel like crap the 3rd and sometimes 4th day.

Grrr.  I wish I had more balance.

But on the bright side, the second day is when my daughter is home….

I puked with the methotrexate this week, and had some pretty bad nausea yesterday as well.  I don’t like that.  It happened in the beginning when I was starting the med.  So I don’t like this side effect just reappearing.  On Saturday, I could point to the dinner we were having, salmon.  That last bite just didn’t quite make it down.  But yesterday morning?  No excuse.  Just wave after wave of nausea.  No puking though.  I hate puking.

Pain?  It’s ok.  Gets to the upper ranges in the morning and especially at night.  This morning I tried to kneel to accomplish something for Sunshine, my knees felt like they were going to explode, like they had fluid in them, or that the joint wouldn’t hold.  Sometimes they feel like they are going to give out from under me.  I don’t know if this is a steroid related thing or a disease related thing.

The joints in my hand occasionally throb.  I massage them and it usually goes away.

Fatigue?  I’m halfway to nodding off right now.  I want to make sure I’m in my bed when that happens.  Sleeping on the couch definitely increases pain to my back and hips.

I have noticed improvement in that I feel better as the weeks go on.  Almost normal.  But actually taking the med and the immediate side effects…I hate.  Again with the catch-22 bullshit.

I see my aunt’s rheumatologist tomorrow for a second opinion.  I don’t know where I’m at in thinking about it.  Part of me wants him to find a completely different diagnosis, one that is more easily treated with chocolate or something.  The other part wants me to have him just say “no, this is sarcoid, you can expect x,y,and z to occur, your doctors are doing the right thing”.

Its not that I don’t like my current doctor, I do, I’m just scared that they are missing something.  The number one thing I miss about Pittsburgh (other than my best friend), is the top of the line medical care.  I had an amazing neurologist.  Awesome pain specialist for fibro.  My internist was incredible.

Not that the medical care down here is subpar, its just that there is no medical school here.  Perhaps it is also that my parents worked in the medical field in Pittsburgh for eons, and they knew which doc to send me too.  And I also had my own little cliques through work that I could ask for referrals.  I don’t have that here.  I can only go by word of mouth from family.

Hopefully, family is right on the money.  Let’s see what tomorrow brings.

Nearly human

I’m trying not to be superstitious.

I had an awesome day on Friday.  I woke up with energy.  Minimal pain.

I was inspired by watching Sunshine waiting for the school bus.  It was nice and cool, light breeze.  She was running around with her friends, enjoying life and childhood.  I just had this overwhelming feeling of love  for her.  She is so carefree.  She was just so happy to be outside and playing with her friends.  I had such a nostalgic feeling and longing for that feeling again.

I also felt this need to get better.  I don’t know what it was, but I just felt this pressure inside me to just do something.

So I took a walk.

I know it doesn’t sound like much, but even getting ready for a walk took longer than it did before I got sick.  Finding and putting on appropriate clothing and shoes took longer than expected.  Then negotiating the stairs. I was a little dizzy, but I took deep breaths and pushed.

And I walked at a slower pace, and then moved it up.  I walked around the apartment complex, then went to the clubhouse to get the mail.  Then back home.

Total: 14min 32 sec

I didn’t keel over and die.

I was exhausted, out of breath, but no pain.  I actually felt better.

So I rested.  And then I was able to do more.

I cleaned the kitchen (filled the dishwasher, ran it, emptied it, did pots and pans, wiped down the stove and counters), did three loads of laundry, and sorted one large load of clutter.

Then in the evening I felt well enough to go to my parents house, help Sunshine get ready to go camping with the Girl Scouts, give her a bath, do her hair etc.

Then me and my husband visited with friends until 2 a.m.  Just sitting at their house and talking.  2 a.m. I haven’t stayed up that late (on purpose) since my wedding.  We even swung by Whataburger for a late night snack.

I felt  nearly human yesterday.

Yes, I had bouts where I needed to slow down, when my husband needed to assist me with walking or changing position, or getting up from a chair.  I did have a few bouts of nausea.  But I dealt with it.

And I came home and did the methotrexate.

And today I’m resting.  So I’m back to feeling crappy, the usual lead in the limbs, unable to walk without assistance of furniture, pain in my joints, immense fatigue, overall yuck.  But yesterday gave me hope that I can be back to my normal life.

Hopefully, I am clearing the methotrexate more effectively, and I’ll have better days like yesterday earlier in the week.

So we will go with “cautiously optimistic” as the attitude for the day.

I will try to take a short walk tomorrow or Monday.