Welcome back to the land of the living

One thing I love about Austin is the plethora of street festivals.

Ever since I have lived here, I have tried to make it to at least one or two per year.

Last year, I made it to one, right before my diagnosis.  I was unable to do the things I wanted to do, i.e. the fall festivals and Halloween, because I was too sick.

So I was extremely excited to be well enough to go to the Pecan Street Festival this year.

I gathered Sunshine and some girlfriends (and one of their reluctant husbands) and we set out to have some fun.

Sunshine got to ride a pony and pet a baby zebra, Mama got some much needed girl time with her besties, and we all got to experience the wonderful eclectic mix of people that is Austin.

When I told my mom what my plans were, she was so excited.

She said “welcome back to the land of the living”.  And I am very happy to be here.

I have done more exercise, participated in more activities in the past two weeks than I have in the prior year.

Methotrexate, not working, and massive doses of steroids really do take their toll.

In addition to working, I have started hanging out with my girls again.  Which is much needed.  Before, I couldn’t tolerate getting out of bed, getting ready, and going somewhere.  Never mind that through the worst of the floaters and issues with cataracts, that I didn’t feel safe driving.  So that seriously curbed my social life.  But my friends were awesome, accommodating me when needed, one even cleaning my house when she came to babysit (she even cleaned my microwave!!).  So its wonderful to be able to return some of their hospitality.

Just hoping that this continues.  That I’m able to stay off the meds and continue getting healthy.

I am already thinking of fun costumes for Halloween…

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I’ll take any good news I can get…

Appointment with rheumatologist today..

My liver numbers are good, my CBC is good, my SED rate is good. C-reactive protein still elevated, but that’s expected.  But not higher than usual.

The big news?

If my eyes look ok next week at the eye doctors, I can stay off of steroids and immunosuppressive therapy.

Hell, even if he needs to do a little pokey in the eye and inject more steroids, I am all for it.

How horrible is that?  I would rather have an injection INTO my eye than go back on those meds.

I have felt fantastic (most of the time) since stopping methotrexate back in May, and the steroids in August.  Outside of my occasional  screw ups with meds (i.e. taking myself off of them) I have been doing much better than a year ago.

I have been walking most days this week.  I was going to start running, but the doc said to absolutely stay away from running.  She said biking, swimming, walking are cool, but without knowing if my sarcoid will spread to my joints, she doesn’t want me doing anything high impact.

So I’ll take whatever good news I can get.  Hoping beyond hope that the little floaters and lights that have crept back into my vision are easily remedied with a needle to the eye.

Another health scare…

Last night, I was listening to my husband recap the ENTIRE “Breaking Bad” series in his own words.

I suddenly got a very sharp chest pain, right behind my sternum, that radiated to my back.

It felt like someone ran me through with a hot poker.

I also felt nauseous, couldn’t breathe and my throat felt like there was a lump in it.

I was a bad nurse, and three weeks ago I elected to take myself off of my blood pressure medications (because I was feeling pretty good and was starting to “bottom out”).

Well, last night my bp was 160/110.  Manual.  Yes, I checked it mysef (after my husband freaked when he saw 160/100 the first time).

I had my husband dig through the closet to find some old bp meds.  I also took some heart burn medication and benedryl.

The pain eventually subsided after an hour or so and I conked out.

I didn’t go to the ER because I’m poor and have no insurance.  

This morning I woke up with elevated bp and feeling like hell.

So I saw my doc, and the EKG showed that it wasn’t a heart attack.  She is calling it an “esophageal spasm”.

FML.

But I’m thrilled I didn’t have a heart attack at age 31.

And I am now back on my blood pressure meds.  Someday I will learn to be a good patient.

Snap, crackle, pop

I’m not talking about the cereal here.

I’m talking about the sounds I make in yoga class.

Since I have been off steroids, I have been making a concerted effort to be more active.

My parents live next to a “green belt” (for those of you unfamiliar, it basically mean “the woods”) and there are walking trails.

And EVERYBODY and their mother, dog and children are out in the evenings and mornings running or walking.  This has to be the most physically fit place I have ever lived.

My ultimate goal is to be able to go to one of my husband’s boxing classes and make it through the entire class without dying.  I’m tentatively setting this goal for next summer.

He finally came to a yoga class with me today.  And he wants to go back.

Yoga has seriously been the best exercise for me since my fibro diagnosis almost 8 years ago.

I started it in my teens and would go to class as time allows.

Mostly every day I have done some sort of stretching.  Either in bed, in a chair, or out on the floor with a mat.

I have been able to keep up with the regular classes, going to the “gentle” classes when I was on methotrexate.

That is one thing I would recommend to anyone with fibro.  Find a “gentle” yoga class.  Go.  Yes, you will feel muscles you never knew you had before, and you will be sore for a few days, but if you do light stretching the next day, it helps.

The endorphins released during this type of exercise really helps with the pain.  The meditation helps as well.  And maintaining flexibility is paramount to having the use of all of your muscles as you age with this disease

A very positive day today (so far).  I’m helping out with Sunshine’s Daisy troop later in the day.  10 shrieking, active, little girls.  Wish me luck..

365 days

I started blogging a year ago today.

Wow.

Interesting year.

I’m thrilled that I have recovered to the point where I can work, even on a very part time basis.  I’m off of steroids, I’m driving.

But there is a price.  And that was my financial solvency.

We finished cleaning out our apartment yesterday.  I really liked living there.  Very bittersweet.

But, we have a room over our heads, food in our bellies.

My parents house is very quiet.  They live in the very back of an upscale housing development.  Its about a mile from any busy road.

With our apartment, it was right ON a very busy road.  So the quiet is a nice change.

My parents also have a house.  Much, much bigger than our apartment, even with 5 people, two dogs and one disgruntled cat under the roof.

And there is a backyard, and walking trails.  So in a sense it’s an upgrade, but with the trade off of living with the parents.

Healthwise, I am much better than a year ago.  My only major issue right now is pain and fatigue, mainly from fibro.

I’ve been overextending myself (again).  Yesterday after dropping off my husband at work, I came home and took a 1.5 mile walk before the sun came up.  That was really nice.  But I’m paying for it now.

My left shoulder has been KILLING me.  I woke up in the middle of the night on Thursday with searing pain stabbing into the top of my shoulder.  I broke down and took ibuprofen (which I really shouldn’t take) because I couldn’t find the Tylenol.  I iced it and had to resort to meditation to get me through it.  It was intense, probably an 8 or 9/10.  I couldn’t move my left arm.  But I finally got back to sleep, and when I woke up, it was gone.  I’m chalking it up to the mysteries of fibro.

Yesterday during my predawn walking fest, my left shin hurt on the front where the muscles attach, right below the patella and above my ankle.  I breathed through it, and was able to complete my walk.  But it was hurting so bad last night that I had to take tramadol.  Again, when I woke up, it was gone.

I tried to explain this to my husband.  He says that I will know when I go too far in my workouts because the pain of actual structural damage is pretty distinct.  But I disagree.  This mystery pain that comes and goes leads me to outright ignore it.

I generally have  a rule that if something hurts more than five days, it probably isn’t fibro.

Money wise, we are much better.  We actually went for dinner at a restaurant that doesn’t feature golden arches on Friday night with Sunshine.  She was so excited to go on a “date” with her parents.  We are contributing to the household finances, but we also get a chance to save a ton of money.

Relationship wise, it couldn’t be better.  My husband has lived up to his marriage vows and has stayed by my side through this entire ordeal.  He has stepped up and taken over the breadwinner role with working 2 jobs. I am amazed at his strength and devotion to making this work, because it isn’t easy.  It can never be easy when someone feels like hell 99% of the time.  Or when there is so much uncertainty in the future.  Or when the doctors really don’t know what to do.  He has always been my advocate, making sure I’m getting good care, making sure I’m taking care of myself, and I am eternally grateful.

Sunshine wise…she is doing fantastic, as always.  She loves her teacher, she was elected leader of her group in her classroom, she is growing a “grass head” for Girl Scouts.  Her tantrum issues have quieted down since the move, and I know she is feeling much better with the overall tension around her dissipating.  There aren’t as many younger kids around here as there were in the apartments, but the kids that are here are a much better influence on her.

Overall, I am in a much better place than one year ago.  I had just started methotrexate and was still on high dose steroids.  I didn’t know if or when my eyes would clear up.  I didn’t know if I would be able to return to work.

Now the future (the immediate future at least) is somewhat certain.  I’m going to complete this work assignment.  I’m going to see how my eyes are before I seek out more permanent employment.  I am seeing more floaters, but the doc said they might never go away.  So I’m determined to hold on until my next regularly schedule appointment at the end of October.

Nothing quite like a major health disaster to make you appreciate the little things.  I’m actually getting my hair cut this week.  That’s something I haven’t been able to afford since I turned 30 (in March of 2012).  I’m able to meet one my besties for lunch this week.  It isn’t at a steakhouse, but just seeing her..alone…without husband/kids/parents is great.

I’m glad to be in a better place.  Hopefully in another 365 days it will be even better.

 

Payday!!

Good Lord, it feels good to be productive again.

I haven’t worked since July of 2012.  I was a hospice nurse (still am in my heart), and I couldn’t drive the 100+ miles per day to see my patients out in rural Texas.  I miss it..

I signed up for a contract job through a company that runs heath fairs and administers flu shots.  I used to work in the immunization department of the local county health department, and I left because I was bored.  But it is the perfect way to get my feet wet and get back to work.

So I sit in Walmart and watch the people go by.  I talk with the old people and the curious.  And I occasionally give shots.  I did 15 today.

And finally, pay day.

First order of business?  Give my dad some money.

I don’t know what happened, but the other day, he hugged me, said he was proud of me, and that he was happy I was living with them again.

I can’t tell you how wonderful that made me feel.  And it felt great to be giving him something toward the household bills, since we are now one big hippie commune.

My first instinct is to scoop up my husband and go to the Melting Pot to celebrate.  But I want to wait until we get a couple of paychecks under us first.

The day to day is a little rough.  I’m still exhausted and in pain most of the time.  But I’m getting through it.  Administering flu shots for 5 hours a day isn’t strenuous.  But having to get up at 5 am, running my husband to work, running Sunshine to school and then getting my own self to work is draining.

People take their energy and pain free lives for granted.  Seriously.

The energy required to get out of bed, put on clothes, find and eat something, getting your shit together and out the door is mind boggling.  Never mind having to get a first grader out the door.

But its working.  So far.  I’m just dead tired when I get home and vegetate till dinner.  Sunday (my only days off until the end of September) found me near comatose for most of the day.

I really didn’t need any energy for that debacle that was the Pittsburgh Steeler game.  When does hockey season start?

So now I’m in to week two.  I just hurt.  But its fibro hurt, not autoimmune hurt.  I’m so glad my parents have a garden tub.

It’s amazing how much stress is relieved when you don’t have to worry about when the lights will be turned off or if you are going to be evicted.  I’m living the high life with both cable tv (actually satellite), reliable internet access and food that doesn’t come from a Velveeta box.

And living with my parents at 31 isn’t that bad.  Right now.  They are sharing in the caretaking duties with Sunshine.  There are five tvs, so theoretically we can all watch what we want to watch at the same time.  I cook and I share those duties with my mom.  My dad and husband take care of the dishes.  My mom is helping with the backload of laundry.

The only “issue” is Miss Punkin (my cat) and her holier than thou attitude concerning my parent’s dogs.

Silvie is being amazing for a pit.  Meaning she hasn’t had my little cat for lunch.  Yet.

Silvie tries to be friends, goes up to Punkin and doesn’t get in her face or growl or anything.  But the second Punkin catches sight of Silvie, her hackles go up and she hisses.  And in the two plus years we have had her, I have seen her hiss exactly one time.

At least Punkin is emerging from under our bed.  When we first got her, she lived in our pull out couch for over a week.  I’d say that’s progress.

And Sunshine loves her new school.  She likes her teachers and she has friends already.  Of course.  My little social butterfly.

So today, things are good.

Sunday Funday!!

My husband has been counting down to this day since the Superbowl.

Now living with my parents, it is even more fun.

We would come over here on Sundays anyway, but now I have my stuff here and the ability to crash if I need to.

I survived my first work week.  I’m only doing 5 hours per day, but that is enough to kick my ass.

Trying to figure out if the fatigue is fibro related or autoimmune related.

I can tell the difference between the types of pain…sharp pains in my joints is usually autoimmune related.  The all over body ache, primarily in my muscles, is fibro.

The fatigue I’m feeling right now is slightly overwhelming.  It is taking extreme effort to do anything today.  My arms feel weighted, I feel like I’m walking in jello.

Also, I had a migraine from hell last night.

I’ll just blame everything on coming off of steroids.

I do get labs done this week, and I see the docs next week.

I have noticed an increase in floaters, but I’m not panicking yet.  I’m determined to wait it out until my appointment in October.

Time to get dressed up in front of the TV.  GO STEELERS!!

The truth hurts..

So Sunshine’s absentee father found my blog.  And he is not at all happy with his portrayal.  

I would like to point out that the child has not had ANY communication with this man since July 21 of last year.  He also blew off a scheduled visitation with her two weeks later.

Imagine what it was like for me…just started on chemo…just came home from supporting my husband as he buried his mother…and having to try to come up with an explanation to my five year old as to why her Daddy didn’t show up to visit with her.  Fun times.

The last 15 months have been difficult.  If you are reading this blog, you already know that.  

Sunshine still occasionally asks about him and her stepsisters and half sister.  I have no answer for her.  All I say is “he is making different choices right now”.

I’m still not clear what prompted his sudden interest in our child.  I did briefly have a text conversation with him that basically solved nothing.  

No reason for the disappearing act.  No apology.

And no inquiries to Sunshine’s well being.  None.  Not a request for a picture (I did send one) no musings on how she is doing in school…no questions about her as a person and how she is growing up.

Apparently he has found God and is praying for me.  He informed me that God will deal with me.  Nice.

This little conversation completely reinforces my decision to leave.  

One day she will have more pointed questions.  And I will show her the reams of email messages, transcripts of text wars.  

I still have my wedding album from my first wedding, along with some of his old pictures.  I still want her to know where she came from.  He is half of her.  And she will be curious one day.

I am eternally grateful for my dad and my husband.  They both have amazing relationships with her.  She also had a great relationship with my grandfathers.  

Positive thinking:  I worked all this week.  I have new floaters in my eyes, but I don’t know if they are old floaters or new ones.  I’m trying to hold out until my appointment with the eye doc at the end of October.  

Things are going smoothly at la casa de mi familia.  No one is dead yet, the cops haven’t been called, and the cat and the dogs are getting along…but keeping their distance.

Sunshine loves her new school.  She seriously just asked me to make up more math problems for her to put in her homework journal.

Despite the circumstances, things are going pretty well.

 

I survived the great move of 2013

So far…so good..

I really surprised myself with what I was able to do.  There are some things that I knew I couldn’t do, so I didn’t even try…like moving furniture.

But I was able to pack and to move some boxes.  I wasn’t slowing things down.  And that is good enough for me.

The first night we moved in here, I took a LONG LONG bubble bath to help with the muscle soreness.  It helped because the next day I could actually move everything.

Day 2 went much better.  I’m still in pain, but it is not unbearable at this point.

I went to yoga today with Sunshine.  Probably the most stressful yoga class I have ever been to.  Sunshine was one of the oldest kids at the Yogatime! class for kids and mommies.  And she was one of the best behaved.  But I didn’t get the usual benefit that I get from a nice, peaceful class.  Oh well.  I’ll have to go again soon.

I am walking every night with my husband.  He’s Mr. Super Athlete, he boxes, runs and played rugby in high school.  He’s going to start training for a marathon.  I haven’t tried to run yet, just a brisk walk is enough to get my blood pumping.  But I’m doing more and more each time we go.

And I work all this month.  Only four to six hours a day, but its something.  And it will definitely help the financial issues.

We will see how this week goes.  Hopefully our cat Punkin survives meeting my parent’s dogs.  Punkin hasn’t really left our bedroom much, but the dogs know she is there, and she knows they are there.  Its just a matter of time before the fireworks start.

Thank you for reading and for all he supportive comments.  I really appreciate them.