Two months…yeah…that’s about right…

Yes, I moved.  It was as horrible/wonderful as I anticipated.

The past few months have been a whirlwind.  And in the whole moving process, I got locked out of my WP account.  And in the few minutes each day I had to sit down at a real computer to try and rectify it, I kept getting the runaround with WP.  I finally was able to get back into it today.

In addition to moving I was offered and accepted a full time position.  

I guess that is the true mark of recovery.  Returning to full capacity as a productive citizen.

This one comes with a caveat though.  I’m not working a true 9-5, M-F.  I’m doing weekends on-call at my hospice.  Meaning I go “on” at 5pm on Friday, and I am “on” until Monday at 8am.  I receive all calls that come in to the two offices in the area, and I am responsible for the visits, emergency visits, deaths, admissions that come my way.  I do have back up, and a fantastic support team.  Its like a condensed version of a work week packed into the weekend.

After a full month of working this way, it is kind of better for me.  Instead of my workdays spread out over five days, I get it all done in two.  I usually recover on Monday and then I have Tuesday through Thursday to spend with Sunshine and my husband.  I spend Friday gearing up for the weekend to come.  

Health wise I’m doing ok.  I started increasing my Lyrica by 25 mg in June, but the side effects weren’t cooperating with my schedule, so I abandoned it and I’ll restart it soon.  

We also found out that my husband needs a pretty extensive surgery, so he will be taking front and center in our health dramas starting next week.  It sucks.  I’m not happy that this is happening, but I do appreciate the opportunity to be giving back to him and to be caring for him as much as he cared for me over these past years.

So I didn’t drop off the earth, just been busy, and locked out.  Hope everyone is well!!!

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R: Respect

 

Respect.  It’s like the Aretha song.  R-E-S-P-E-C-T find out what it means to me…

Well, to me it means understanding that I’m not the generic patient.  What works for the “majority” of patients doesn’t necessarily work for me.  I am a unique individual, with my own unique DNA, my own unique chemical structure and I may react differently than expected to a certain treatment or medication.  It is understanding that I may not fit the cookie cutter mold of what a certain patient “looks” like.  And this applies to my family as well as my docs.

It also means respecting my intelligence, my decision making abilities and my goals of care.  In hospice, the focus is always on what the patient wants, what the goals of care are, how we can achieve what the patient desires.  I think that should be applied more to medicine in general regardless of setting.

For me, my goals mainly consist of maintaining my vision.  Keeping my pain and fatigue at low levels.  Maintaining the ability to work at least part time.  I know my limitations.

I just wish the medical community would take this into consideration when starting a treatment.  Think outside the box.  Be more holistic.  Understand and respect the patient as an entire person, not just a body.  That is what respect means to me in this context.

P: Pars planitis

 

Pars planitis is the term my eye doc uses to generally describe my eye condition because he really has no clue if its sarcoidosis or something else.  Here is an overview from parsplanitis.org:

Pars planitis is a form of uveitis, one of a diverse group of potentially blinding but treatable inflammatory eye disorders affecting the middle layer of the eye know as the uvea or uveal tract.  Pars planitis can occur in one or both eyes. It can affect children as well as adults.  In some instances, the disorder occurs as a complication of systemic illness. In other cases, the cause cannot be determined.  In either instance, pars planitis is a treatable condition and may require the use of systemicimmunosuppression medication and/or surgery to halt its progression. Untreated, 20% of patients with pars planitis will have significant vision loss, and some will become blind.

Yeah.  That shit is scary.

Even as a nurse, I never knew that autoimmune diseases could affect the eye.  Until I found out the hard way.

So it’s rare.  It’s difficult to treat, it most likely involves needles or surgery IN THE EYE and it might never be gone.

Great.

As of today, I have been off of steroids for 8 months.  I have been off of methotrexate for almost a year.  I haven’t had a MAJOR recurrence, but the floaters are still there.  It looks like an old movie reel.

My night vision has improved greatly to where I feel comfortable driving at night.

I still have difficult adjusting from bright light to low light and visa versa.  Small print gives me difficulty.  I very rarely wear contacts because the irritation they cause isn’t really worth the effort.

I found out later from my doc that he thought I was going to go completely blind.  He didn’t want to tell me at the time, but at my last few visits he shared that with me.  Mainly to highlight that I’m 90% better than when he first saw me.  I still don’t like hearing that he thought I would go blind.

I see him in a few weeks, and hopefully I get another good report.  I don’t know if I will ever be completely “out of the woods” but its nice not to expect a needle in the eye at every doctor’s appointment.

M: Medication

 

I hate the fact that I require chemicals ingested into my body on a daily basis to live a pain-free, comfortable life.  I have this fantasy (a goal, actually) that I can get off of the meds in 10 years.  That may or may not happen, but it is nice to think about.

I have been on some sort of medication every day to control either migraines, depression, fibro or autoimmune disease for nearly 20 years.  That’s a lot of medication.

My record for consecutive days without medication was 10 weeks when I was pregnant.  By the end I was so anxious, so wound up, couldn’t sleep, etc that they wanted me on something.

I hate being beholden to something like this.  The thought that my body would go completely haywire if I didn’t take my meds.  I have tried, unsuccessfully, plenty of times to wean off, but it is usually ends in disaster.

I’m not going to go into details on what I currently take or what I have taken, but I will say that Lyrica does work for me.  I have been on it for 6 years and after I got over the initial 6 weeks of adjustment hell, it is well worth it.  It was like I woke up one morning and the pain was turned down.  It is not like I don’t have fibro pain, I do, but I am able to function better with it.

I was on methotrexate for almost a year.  That was a horrific year.  I blogged about it plenty in this forum.  Yes, it was a low dose chemo.  But I am so damn drug sensitive that it completely depleted me.  I felt like the tin man.  I could feel it seeping into my cells.  It was awful, and I will do anything to stay off of that med and off of steroids.

I absolutely refuse to take the heavy hitting narcotics for my pain.  When I was first diagnosed with fibro in 2005, all I knew about it was the few patients I had in the ICU with it and their uncontrollable pain.  These poor ladies would come in and have med lists as long as my arm.  They would be in a flare and they were so drug tolerant that nothing would touch them.  I was terrified when I was diagnosed, and I decided that I would never look to opioid narcotics for daily pain relief.

I do have a script for tramadol that I use very, very sparingly.  Probably less than twice a week.  But I refuse to ask for a script for hydrocodone, percocet, etc.  I feel that those sorts of meds are best for acute pain, not chronic pain.

I have nothing against people who do use those meds, but I do feel that there are better ways to manage chronic pain, and that chronic pain is woefully treated in this country.  I do feel that chronic pain can be treated better if certain substances were taken off of the schedule I list.  I also feel that other non-pharmaceutical treatments can be used for pain, and I do use them myself.

Just because there is a pill for that, doesn’t mean we have to take it….

J: Jokes

 

If you can’t joke about chronic illness every once in awhile…it will make the journey much more difficult.  So here are some funnies:

 

 

 

 

 

 

 

I: Insurance

 

With or without?

I have been on both sides of the coin (and I found out recently that I am abruptly without…but that is another story, fml).

And honestly, it is easier without.  I understand why people aren’t signing up for Obamacare.  Insurance is a pain in the ass.  Sometimes literally.  It can give you diarrhea.  See this post here.

My year without insurance…hmm..I probably didn’t get the BEST care possible.  But I received adequate treatment for my condition.  Steroids have been around forever.  They are cheap.  Methotrexate has been around forever.  It’s cheap.  At one point the doc wanted to try a RA med, but because I was uninsured, I couldn’t have access to it.  But it wasn’t life or death, and it didn’t make a difference in the outcome.

Now, I do owe something like $20,000 in medical bills.  I did have to come off some of my maintenance medication (such as Topamax for migraines) but there are ways to obtain expensive meds.  That paperwork sucks too, but again, it is possible.  I obtained my Lyrica and my migraine meds (Treximet) for free by sending in proof that had virtually no income and a script.

It helps that I’m a nurse.  I know what signs and symptoms are dangerous.  My docs trust me to monitor myself, my blood pressure, to titrate my meds on my own.  So that makes a difference.

Since I have had insurance (since Novemeber).  It has been a pain in the ass to get ANYTHING fucking covered.  Meds, doctors visits, procedures.  I have to prove everything. Prove that I have this.  Prove that I need that.  I have scanned countless receipts, doctors notes, etc into their “easy to use” data base to get shit paid for.  And now I don’t have insurance because the mother of my bonus son doesn’t have his birth certificate and we couldn’t get it from the state in time to make the deadline.

So instead of kicking him off the insurance (he has other coverage, we were just trying to get him BETTER coverage), they kicked us all off.  I went to get my meds the other day and was absolutely shocked at the cash price.  So now I’m paying by the pill until it gets straightened out.

So yes, insurance can be a lovely thing.  But it can also give as many migraines as it prevents.

C: Corticosteroids

 

Corticosteroids:  IMHO are the fucking devil.  But according to MedlinePlus —

You may have heard of anabolic steroids, which can have harmful effects. But there’s another type of steroid – sometimes called a corticosteroid – that treats a variety of problems. These steroids are similar to hormones that your adrenal glands make to fight stress associated with illnesses and injuries. They reduce inflammation and affect the immune system.

You may need to take corticosteroids to treat

• Arthritis
• Asthma
• Autoimmune diseases such as lupus and multiple sclerosis
• Skin conditions such as eczema and rashes
• Some kinds of cancer

Steroids are strong medicines, and they can have side effects, including weakened bones and cataracts. Because of this, you usually take them for as short a time as possible.

That definition barely scratches the surface.  Most people who have autoimmune disease are put on steroids at some point.  The side effects are awful and the above definition doesn’t do them justice.  Think of the Hulk, if he was weakened from fatigue, doughy from weight gain, and probably cried all the time from the mood swings.  No SMASH, more EAT!!

 

I was on high dose steroids for over a year.  I even had steroids injected into both of my eyes.  It sucked.  I gained 60lbs, I now have cataracts in both eyes, my stomach lining is permanently irritated and I will forever have nasty reflux.  Not sure about my bone density.  I will do everything in my power to stay off of these meds.

They taste awful too.

My grrrrrr face

Yes, this is my grr face.  Today is a BAD pain day.  In hindsight, I can see how this all transpired.  The “four seasons in one week” weather is contributing.  I have been running around trying to get a job, which I may have succeeded in doing.  I am emotionally spent.  I went on a date TWICE this week.  The second one probably did me in.

It was 34 degrees on the night of date number two.  And we went to an outdoor concert.  They have outdoor events nearly year round in Austin  because it rarely dips below freezing.  But we pick the one night in the past two weeks where it WAS near freezing to go to an outdoor show.  Figures.

Oh and we sat in metal chairs.  That did wonders for my fibro.

But we had fun.  We saw the Spazmatics at Cedar Street and they were fantastic.  Although I was born in the early 80s and wasn’t really old enough to get into the music scene, I knew all the songs and loved the energy.  Definitely what I needed.  A night of fun.  A true date night.  Absolutely loved it.

So it is all catching up to me.  And since I’ve been rapidly titrating Topamax, I’m dizzy as well.  And I spent most of yesterday in the car running from my potential new employer to a drug screening, to the car dealership, to the store, to the mailbox place, to a friend’s house to scouts.  People who don’t experience what we experience don’t understand how awfully draining just driving can be.

This morning I woke up and literally couldn’t move.  My hips and low back were frozen.  Every time I tried to move, even a little, I gasped.  It was like my body was cut in half.  My husband, who just returned from his night shift, got Sunshine ready and off to school.

There are things that I HAVE to do today.  Like laundry.  I have no clue what Sunshine wore to school today.  If it matches, if it’s clean.  We are to that point in the laundry cycle where I MUST do laundry or we will be wearing bathing suits.  So that is adding to the misery.

My parent’s dogs are collaborating to make me insane by whining to go outside every two minutes.  They can’t coordinate their peeing/pooping/barking and the wind schedule.  So I’m getting up and down constantly.  Again, this is something that someone who doesn’t have these issues will never understand.  The whole act of hoisting my screaming body up from a seated or lying down position is extremely excruciating.  The same with getting back into said position.  So much so that I spent at least a half an hour pacing just to avoid the frequent up and down.

I can’t find my heating pad.  I can’t find my biofreeze.  I took an extra hot shower this morning…getting into the tub was fun.  I already took tramadol and I don’t want to take another because I do have to drive to pick up Sunshine this afternoon.  I have been stretching, but today, that is seeming to make it worse.  I have already warned my mother that I will need her assistance this afternoon.

And I’m not eating.  It is doing wonders for shedding of the steroid weight, but it might be contributing to this entire feeling like shit mess.  I think its the Topamax and the emotional upheaval.  I’ve been living on Fruity Pebbles and cottage cheese for the past few days.  And I pretty much have no desire to eat anything else.  Not even the Girl Scout cookies I have stashed away.

I keep telling myself that I can hold out another month or two.  The weather will improve.  Usually when it gets into March, we won’t see these roller coaster “four seasons in a week” periods.  I will hopefully get hired in the next week and can get back to work.  We can move out.  That will do wonders for my health.

As Sunshine grows, she is amazingly more supportive.  She hasn’t known anything else than a chronically ill mom.  She knows that I don’t prefer this.  She knows that when I feel well enough, we do the park, we do the mall, we play, we giggle, we have fun.  But on days like today, sometimes we just snuggle under the covers.  She gives me extra hugs.  She brings her stuffed animals to snuggle me as well.

I am eternally grateful to her Girl Scout troop.  Her leader and several of the moms know my issues.  They are great about helping out with transportation and play dates and getting her to and from events when I can’t.

So today sucks.  It will be 80 degrees tomorrow, so it will be better.  But then it is supposed to get cold and rainy again next week.  I honestly prefer the searing heat.  At least it is consistent.

Migraine city

 

Can you guess which is the worst for me right now?

I have had migraines since puberty, probably before.  I have taken almost every med under the sun.  Treximet works, usually within 30 minutes, to quell the war within my brain.  But Treximet is expensive.  My cost, even with insurance, is $64 for 9 pills.  I am currently having 4+ migraines a week, so that doesn’t exactly work out in my favor.

I’ve been supplementing with Excedrine migraine, but I’m EXTREMELY drug sensitive, and that small amount of caffeine (as low as the amount in a cup of coffee!) is enough to keep me up at night.  Which is why I don’t drink coffee.  That and the smell.

I have started back on Topamax, and as the nurse that I am, independently increased my dosage.  No horrible side effects yet.  I just want the pain in my head to end.

The nausea is enough to keep me from eating actual foods, which is slightly beneficial because it keeps me from seeing certain people at meal times.  Yes, that situation has not gotten any better, despite my best efforts to duck and cover.  I truly feel that my relationship with my mother is beyond repair.  Don’t think I can ever forget the evil she has spewed at me over the last few months.  It still hurts, but my shell is growing back.  Tougher and thicker than ever.

The one truly awful side effect of this migraine nonsense is that I haven’t been able to fully enjoy Valentine’s Day.  My husband bought me chocolates, and I can’t eat them.  Major, major trigger.  Boo.

Good news?  I should be hearing back from a prospective employer sometime soon.  I’m hearing from a friend that works there that it is a pretty good bet that I’ll be hired.  The sooner I start, the sooner I can move out.

Maybe that will take care of my number one trigger:  stress.

Does it ever end?

Just got over the concussion, now I have a new crisis.

My initiation into chronic illness came 8 years ago.  I worked in the ICU as a registered nurse.  I’m not sure exactly how it happened, I was on antibiotics that have now been proven to cause these types of issues, but I contracted c.diff.

For those of you who don’t know (lucky you!) c.diff is a spore forming bacterium that is absolutely devastating to the GI tract.  Most people who contract it are ill, older or younger.  Around the time I got sick, they were finding that more and more “healthy” people were contracting it from seemingly innocuous means, i.e. after surgery or while taking routine antibiotics.  I was relatively healthy (no fibro yet) and 23.

They theorize that my strain was the more “virulent” type recently found in Canada and that was spreading its way across the U.S.

Symptoms are usually massive diarrhea, for me, over 24 times per day, along with horrific stomach pain.  They really don’t have effective treatments for it other than more antibiotics.  Some which are toxic.  They are still experimenting with a “stool transplant” (pleasant, I know) to infuse the infected gut with “healthy” bacteria.

I became violently ill and required hospitalization.  Twice.  I was losing massive amounts of fluid from the constant diarrhea, and the pain (the churning) in my gut was unbearable.  I came thisclose to requiring a colectomy and pooping into a bag for the rest of my life.

About four months into the c.diff infection, I was diagnosed with fibro.  The theory there being that the overwhelming infection triggered the fibro.

It was 9 months and down 40lbs (which I couldn’t afford to lose at the time) later when I was finally deemed infection free.

The day I received this news was the day I found out I was pregnant with Sunshine.

Unfortunately her biological father wasn’t as happy as I was at the news.  We were married for less than a year when I got sick.  And the toll of the medical costs, the loss of my income (since I couldn’t work) and the stress of my illness more than likely contributed to the demise of our marriage.

Given the overwhelming immune response that occurred, they (the docs) think my autoimmune issues might have been triggered at this time as well.  Which leads me to present day.

I haven’t relapsed since 2006, but I have had GI issues since that time.  I have been extremely cautious about any antibiotic use.  I also found that I have to be VERY VERY careful with NSAIDS (think ibuprofen, naproxen, etc).

After concussion #4 I was prescribed some heavy duty NSAIDS.  I developed bleeding in my stomach after that.  It was treated easily with Nexium, but from then on I have had to stay away from any type of pain reliever other than Tylenol or Tramadol.  Fun for someone with a chronic pain condition.

The long term steroids further damaged my GI tract. And with this last concussion, and the subsequent migraines it spawned, and the fact that I twisted my knee exercising, I dipped back into the ibuprofen.  My migraine meds have naproxen in them.  And now I’m completely screwed.

I’m having bleeding again, horrific gastric reflux, and severe pain right under my sternum.  I wake up with a sore throat every morning.  I’m changing my diet as to not increase the pain, but it really isn’t helping.  I’m eating Zantac twice a day.

The pain is about 6-7 in my stomach for most of the day. And its getting worse.

I have an appointment with a GI doc in January.  I’m hoping that my PCP can call in something like Nexium to quell this volcano in my stomach.

And did I mention that I’ll be on the East Coast for the week between Christmas and New Years?

I’m stressed, the family issue is tense, and Christmas is a week away.

I’m just hoping that I get some relief soon.