I can see clearly now?

Good report from the retina specialist.  So why did I put a question mark?  I still have black floaters that I’m supposed to “get used to” and my vision is blurry at times.  I have never had perfect vision, I have had to wear glasses or contacts since I was 8, but seeing objects in my field of vision isn’t something I ever thought I’d have to get “used” to.

We discussed my overall diagnosis.  He again stressed that it “could” be sarcoidosis.  He “could” do a biopsy on my left eye, isolate the ‘snowballs’ or collections of cellular material gathering in the back of my eye and see what it is and then I “might” have a definitive diagnosis of sarcoid.  But he does not feel that the benefits outweigh the risk of cutting my eyeball open.

So the poison appears to be working.  Woo.

I have a second opinion scheduled for next week.  I just want to know that I’m doing the right thing.  That this is what it is.

I have been having more and more pain in my joints.  The knees were really bad last night.  8/10 and required intervention.  I was actually shuffling around the house because my knees were so tender.

I’m still having to ration healthcare based on my financial status.  I discussed depression as a possible cause of increased pain, but I haven’t been able to afford the copay for more than one appointment per week.  I go in order of priority.  Eye doc and rheumatology comes first.  Maybe I’ll up my zoloft again.

I’m trying.  When I try to do more, I hurt more, and I crash.  How does one get past that?

I know, start low, go slow.  Just walking a block to the front of the apartment complex seems to zonk me.  Just running errands exhausts me.  I don’t know what to do here.

Any tips???  Tricks??  Ideas??  I’m completely at a loss.

Exhaustion, nausea and pain…oh my!

I guess it was a combination of events that did me in today.

1) I went out to lunch.  In public.  For two hours.

2) I went to a wedding.  In cowboy boots, about an hour away from my house.

3) My dose of methotrexate went up by 2.5 mg (because the uveitis in my left eye isn’t clearing up).

4) And I helped to clear the way so that newer furniture could be moved into my living room.

Probably doesn’t sound like much to the average person, but to me, it resulted in severe pain and sleeping for 13 hours today.  And I will probably go back to sleep earlier than intended tonight.

I try so hard to live within my new reality.  But even when trying to live within those boundaries, I am still met with exhaustion and pain, it can  be disheartening.

I don’t see anything I could have done differently with lunch.  My cousin and his wife are expecting a baby, and our family is having the shower for them.  I am in charge of decorations.  I made my own wedding bouquet (before my hands rebelled in pain), so I feel fairly confident I can do a few nice things for the shower.

Yes, I could have worn more sensible shoes to the wedding.  But it was an outdoor wedding, and the ground was soft, and heels weren’t a much better option.  And my wardrobe is severely limited these days due to the weight gain brought on by the steroids.

Both being out in public for lunch and a wedding in the same day?  Now that is apparently asking for too much from my poor body.  We were home at 9:30, I was in bed by 10:30.  I didn’t party all night (ha!), I didn’t drink alcohol.  I didn’t even get to dance with my husband (I danced a little bit with my daughter).  Still, my body hated it.

Then I came home and gave it more methotrexate.  That’s where the nausea came in.  No vomiting, just more sensation of wanting to throw up all those wedding treats.  Yuck.

And Sunday.  Day of rest, right? Ha!

A friend of ours has recently downgraded to a smaller place, and was getting rid of her couches, which were nicer than our mismatched, tore up, used as a kitty scratch post, set.  So we had it all set with trucks and friends and the owner of said furniture.  Of course I couldn’t help with actual lifting.  I helped with clearing my old bookshelf (which had to go), moving my coffee tables, cat and child wrangling.

Most days after I do a dose of methotrexate, I do not move.  It is near impossible.  I pushed through that sensation of concrete, and literally had to order my limbs to work.  I stumbled around a lot, grabbed on to walls, but it got done.

And this morning.  My daughter’s school bus gets here at the crack of dawn.  But now it was at least light outside, so I didn’t feel like I was sending her to school in the middle of the night.  I woke up for 20 minutes to help and get her ready and then crashed once she was at school, and after I took some tramadol.

And I didn’t wake up until 2 p.m..  And I woke up in pain.  A hot shower helped to take the edge off.  I detest taking any kind of pain medication stronger than Tylenol when I am responsible for anything (my child, patients, etc) so I am currently waiting on my husband to get home from work tonight at 9 p.m. so I may take another tramadol.

Lately, the pain is in the joints.  And I have been off of the omeprazole for nearly a week now.  Pain in my knees, hips, shoulders, elbows and fingers.  Especially in my hips.  This morning when I was contemplating writing a post, I thought it impossible.  The pain was that bad.  It’s starting to get that way again.

I would like to see my  husband during my waking hours today.  But seeing that his Philadelphia Eagles are once again putting on a stellar performance, this time in front of the nation on Monday Night Football, maybe that isn’t such a good idea.

So, new lessons learned.  It’s more of a combination of things that contribute to the pain/nausea/exhaustion triangle.  And once again, “pushing through it” might work well for fibro (even then its iffy), but it will destroy me with this disease.

Like I’ve said in earlier posts, it took me a good three years to learn my limits with fibro.  Learning them the hard way.  And I still hold out that hope that I will miraculously get better.  That I will wake up one morning and have energy, not be in pain, and be able to see and think clearly.  I have been holding on to that hope for almost 5 months.

Positive thinking:  this  election season will be over tomorrow. Hopefully.  We all remember what happened 12 years ago.

Wait, that was supposed to be positive.  Ok, well, yesterday while cuddling, my husband and I were talking about how happy we are together.  Even though it seems like things are caving in on us.  We barely made rent, we are having difficulty purchasing food, things are pretty dire right now.  But we were able to lay there and talk about the positives.  That we love each other, we are happy together, our kids are healthy, we have a roof over our heads, and that we do have food to eat, even though it isn’t 100% what we would prefer to eat right now.

Most couples crack in times like these.  My previous marriage failed during a time like this (actually in a more stable time than this).  I am so fortunate to have him as my partner.  Yes, it gets dicey, but at the end of the day, we can count our blessings.

That is a big positive.

 

A new member of the 47%?

I have always prided myself on graduating with a profitable degree at age 21.  I am a registered nurse.  While my peers were still in college, most attempting to get now worthless degrees in areas like “communications”, I graduated with a job and have worked steadily ever since, with the exceptions for the time I was ill and had my daughter.

I have worked since I was 16 actually.  I worked each summer as a lifeguard.  I worked 16 hours a week throughout nursing school.

I have nursing experience in pediatrics, critical care, hospice, telenursing, and pain management.  I have worked in doctor’s offices, pediatric mental facilities,public health, huge hospital systems, and non-profit entities.  I have never had the luxury of “choosing” not to work.

I have always been the breadwinner in each of my marriages.  In my first marriage, my ex husband resented that fact.  At one point, he was able to pick up benefits and I was able to switch to more lucrative agency nursing.  In this marriage, my husband’s job does not offer benefits.  The economy is not what it was in 2005.

I state all this because I am not a “welfare queen”.  In fact, my politics were more toward the red side until I started working with illegal immigrants and the profoundly destitute during my last employment as a hospice nurse.

Why do I say “last employment”?  Well, my health condition is such that I can no longer serve in that capacity.  My main doc has determined that I can work 20 hours per week in a limited capacity.  I’m not sure I could even do that.  She has also determined that I have mental limitations, i.e. difficulty concentrating, “mental fog”.  I cannot sit or stand > 30 min.  That’s true.  I seem to express myself better in writing.  Granted, I usually write these posts over a few hours.

So currently I’m on a “medical leave”, which means I can keep my current insurance (while paying for it out of pocket), until the end of the year.  I’m still waiting on the official paperwork.

The voluntary short-term disability policy through work that I was paying in to has decided that they think my sarcoid condition might be “pre-existing” so I spent hours today rounding up information on all the doctors I’ve seen in 2011 (none were rheumatologists, none were retina specialists).

I just don’t like that feeling that someone feels that I’m being deceptive.  Look at the name of this blog.  “True life is stranger than fiction”…I would have never thought in a million years that I would have developed something like this.  That I would be on frickin CHEMO.  To think that I would make it up to try and get out of work and to get my policy to pay for it is insanity.

I haven’t had any kind of income under my name since August.  To say it has been a blow to our family would be understating it just a bit.  We are looking at not making rent.  My parents have  been more than helpful financially.  But they cannot support my household and their own.

That’s where the 47% thing comes in.  I am seriously considering applying for social security disability at this point.  Also applying for any other benefits that I can apply for.  We literally have negative money in the bank at this point.  We have wiped out all meager savings that we did have.  My parents can no longer help out.  My husband has been applying for other jobs, but he is not getting any feedback.  Hell, I’m just happy he HAS a job.

*I am using a borrowed laptop (from my parents who have an ungodly amount of technological devices at their house) and the internet is <$40 and was paid last month.

Point is, I am not what the right is rallying against.  My mother, a staunch republican and tea-partier, is actually encouraging me to “apply for everything you can get”.  I’m sure if her fellow tea partiers knew what she was saying, she would be kicked out.  Ha!

I have been working hard since I could start working.  I have seen children come into this world and others leave it.  I have been puked on, bled on, peed on, pooped on, spit on.  I have compassion.  I have been with families as they have made the decision to terminate life support.  I have literally pulled the plug on those patients.  I have witnessed the most beautiful final moments of life.  I have helped ease pain of the sick and dying, regardless of income, ethnicity, age, religion.  I have educated teenagers, adults, families, the elderly about everything from sexually transmitted diseases to the dying process.

And now I’m sick.  There was nothing I did to get sick, and if you look at it, I originally got sick on the job, seven years ago.  I have followed the treatment recommendations of all of my physicians.  I am not “looking for a handout”.  I have paid into a system since I became eligible to work, and now I need help.

I despise the fact that I have a million and one hoops to jump through to access benefits that I have been paying into for just this exact situation.  That my husband has to sell his car so we can pay rent.  That I have to cancel doctor’s appointments because I can’t afford the $30 copay.  That I have to decide which of my medications are “more necessary” than others.

The medical bills keep piling up.  My insurance only paid “x” amount of this bill, I apparently owe the rest.  To get a needed operation for my daughter, it cost $1,500 up front.  You think I paid for it?  Child got her tonsils out for Christmas, thank you Mom and Dad.  And she really needed them out.  They were badly infected.  And don’t worry, she will have a good Christmas.  But I do see some black humor in her finding her tonsils in a jar under the tree.

I’m honestly just trying to keep my sight.  And to stay out of pain.  I would love to return to work.  I am bored.  But I can’t convey my ideas concretely enough through speech.  I stutter, I have brain fog, word finding issues.  Its severe.  And then the physical issues.  Pain.  Fatigue.  And then my eyes.  So frustrating.

I would like to keep my sight and not get evicted.  Is that too much to ask as a woman who has played by the rules all her life?

It has taken me two hours to write this post.

Halloween hangover

The morning after!

Well, it is the morning after Halloween. Sunshine definitely overdid it. Maybe she should have read some of my previous posts about overdoing it and conserving energy.

In true Sunshine fashion, she had a wardrobe change midway through the day.  First, she was Pinkalicious (from the books) and then she transformed to a fairy for the evening.

As for me, I slapped on some wings and called myself “The fairy of chronic illness”.

Sunshine’s friend came over and my dad took them both around the neighborhood to Trick or Treat.

My suggestion of  Sunshine going to just a few houses and then coming back to hand out candy was overruled (that happens a lot at my parent’s house, its like all rhyme and reason stops at the front door as well as Mommy’s rules).  She was out from 6 p.m. to 8 p.m.  In her teeny weeny costume.  Fantastic.

She was running around, yelling, singing, dancing, I just knew it would be trouble for me this morning.  And I was right.  I hate it when I’m right about these things.

Child woke up this morning and couldn’t swallow.  Face is swollen.  No fever, but her breath could rival a zombie’s.  She is not having the easiest recovery from this tonsillectomy.

So I gave her some medication, rocked with her for awhile until it kicked in and she was able to swallow.  And the pushing of the fluids  begins again.

She really wants to go back to school.  In the worst way.  She was also crying this morning and begging to go back to school.  I can’t send her if she can’t swallow.

My husband (her STEPfather) has volunteered with a program they have at the school to provide a positive male influence for the children.  Today is his assigned day to be in the class, help with drop off time, lunch, etc.  So he went even though she didn’t.  I am so proud of him.  So Sunshine really wanted to be there to show off her “Daddy”.

I guess she is like me.  When she temporarily feels better, she pushes it to the max.  She doesn’t realize she is overexerting herself.  And then she wakes up the next day worse than the day before.  Its this vicious cycle of one step forward, two steps back.  My poor baby.

As for me, I am further down the path of learning my limits.  I handed out candy, and that even zonked me.  Sitting in one position for two hours as it gradually got chilly did a number on my joints.  I was so stiff all over when I finally did move, I had to take a moment to unfreeze my joints so I could move properly.  And it was painful.

But the migraine went away yesterday afternoon.  I’m kind of in that after-haze of a migraine where it has the possibility to come back.  I definitely tempted my blood vessels and nerves by eating Halloween candy.  Chocolate is a well established trigger for me.  Oh and I ate a hot dog.  But it was nitrate free.  I should know better.

So we are taking it easy today.  I’m going to put us both to bed in a minute.  Sunshine doesn’t know the meaning of “rest”.  So I shall teach her.  The child does not need to be in perpetual motion.

I’m just not used to Sunshine being sick.  And it is very difficult to take care of a recovering child when you sick yourself.

But Sunshine did get A LOT of candy.  That she can’t eat.  Yum !

** I’m not that mean, I’ll save some for her.  But like all parents know, you have to “test” the candy and remove the “dangerous” items.  Namely Reese’s cups, Milky Way bars and Kit Kats.