It’s a full time job…


And no, not one that actually pays me.  I’m talking about trying to get my medical issues paid for even when I have insurance.

My husband has United Healthcare.  And I am thankful to finally have insurance, but the hoops I have to jump through to get anything paid for are absolute insanity.

He has an HRA, which I am slowly figuring out.  They basically put money aside from his company (not just the FSA, I’ll get to that in a second) to pay the deductible.  Half of the deductible.  No copays until the deductible is satisfied.  My deductible is $3,600.  But I’m halfway there on February 1st.

But trying to get the HRA to reimburse ME for out of pocket expenses is like pulling teeth.  I submitted one bill in the first week of January.  They said they lost it.  I submitted it again the following week, they said that they couldn’t read my name on it.  They actually told me to take a pen and go over the name and amount on the receipt so that they can see it better.  FML.

So I am trying to resubmit right now, have been for the past week, and it is either their site being down, or something wrong with the settings on my computer, because it won’t upload.  But I can upload things just fine to other sites, including ADP (that’s another headache).

I have even toyed around with the settings on both this computer and my own laptop.  Nothing will upload.  So I will go the fax route.  But they don’t understand that not everyone has a fax machine, and to get to one i.e. Kinkos or a mailbox place, entails a chronically ill person getting out of the house and physically making it to said fax machine. Fuck.

Now ADP.  I hate them.  With a passion.  I have used the brand new FSA card to try and pay for this shit.  And they promptly cut it off after the first transaction.  And they won’t just take a regular receipt.  It needs to be a “detailed” receipt.  But at least their site lets me upload.  It just takes forever to go through their system.  So maybe I’ll get access to the money my husband already has set aside for us to use in the near future.

And its not like I actually need this money or anything.  I just have thousands of dollars sitting around to pay these out of pocket expenses.

So I am patiently waiting for the mailman to get here with my husband’s paycheck so I don’t have to be relying on Sunshine’s cookie money to keep gas in the tank.

That’s another headache too.  My husband works for a multi-billion dollar international company.  He has been working his ass off since he got this job, on night shift no less.  He volunteers for overtime.  Yet he has had not one paycheck that wasn’t completely fucked up.  And it is not just him.  All of his friends have had issues with their pay for MONTHS.

He has been working there since the end of October.  He has submitted his forms for direct deposit FOUR TIMES.  FOUR FUCKING TIMES.  And yet it has not gone through.  He used his PTO to go to Delaware last month.  His first paycheck when he got back did not include his PTO.  That was fun.  Nothing like expecting a paycheck for a thousand dollars and getting one for $400.  There was also the time that they mailed him a paycheck, and then stopped payment on the check for no reason.  Right now, his company owes us like $300 in overdraft fees.

This last paycheck, they shorted not just his overtime, but his shift differential as well.  And the HR people at his company are complete assholes.  I mean the ones at his physical worksite, corporate is fantastic.  But these assholes act like they couldn’t be bothered to actually do their jobs.  They act like them not paying him is none of their concern.  And because they are only there from 8-5, and his shift is 6p-6a, he rarely has the opportunity to see them with his issues.  And no one will talk to me.

And I am still on the job hunt.  But I got some bad health news today, so that might be stalled.

I had a colonoscopy/endoscopy done on Monday. There is “inflammation” in my stomach and intestine, but they don’t know what is causing it.  I have to wait for the pathology report.

My pain has been just awful.  My joints are starting to swell and I can feel the warmth and see some of the redness.  So I saw the rheumatologist yesterday.  She is VERY concerned about the GI stuff.  She told me that just based on feeling my joints, they are inflamed and swollen.  So she got xrays of my hands again and drew 6 tubes of blood to see what is going on.

On the positive side, maybe this will clear up what is actually going on with me.  Maybe the biopsy from my gut can finally tell them if it is sarcoid or not.  Maybe my blood will come back positive for something else other than just an elevated lysozyme level.  Not that I’m hoping for another diagnosis, I just want a CLEAR diagnosis.  Something that says “yes, you have this disease, and this is how to treat it”.

Ugh.  Off to apply for more jobs.  That alone is another full time job.  “No, we won’t accept your resume, you have to list every single employer you have had for the past 10 years, their address, their phone numbers and your supervisors that probably aren’t there anymore”.  And given that people with chronic illness tend to change jobs or have holes in their employment history, this is a fun task.

I’m pretty sure I have lost out on three jobs right now because I answered truthfully when they asked “and why did you leave your last job?”  I said “because of acute illness”.  I specified “acute” because that is different from “chronic” and I already learned a long time ago to keep the fibro under wraps.  So now I’m going to start lying.  “Oh, I didn’t feel like working anymore” and keep this entire fiasco under wraps.  I just feel so wrong about it.  I don’t like concealing the truth, and if someone is going to invest time and money to train me, I don’t want to come to them a month later and say “I need to take some time off because I’m sick again”.

And these aren’t even full time jobs.  I’m specifically looking into PRN jobs.  In the  nursing world, that means “as needed”.  Most of these jobs ask for a set schedule, but you aren’t “forced” to work 12 hour shifts or weekends.  They usually don’t come with  benefits, but I don’t need them.  This was my plan BEFORE the autoimmune diagnosis.  To go PRN once my husband found a job with benefits.  Something flexible so that I can work more when I’m healthy and bow out when I’m not.  It’s not an issue of not wanting to work.  I have been sick long enough to know that I CANNOT work full time, unless it is something so benign and easy that I don’t move much.  Good luck finding that as a nurse.

So if anyone has any ideas on any of this, how to navigate this insurance nightmare, where I can work, give me a clue.  I’m very frustrated right now with this state of affairs, not to mention my living situation.  Sorry for the rant.  Thank you for reading.

Day 4

Your Favorite:  5 blogs

This was tough.  I have so many varied interests and if I sit in front of my computer too long, I’ll go down the blog hole and then two hours are gone.

So here are my favorite blogs, in no particular order:

Lethargic Smiles – Jackie is a young lady with chronic illness.  Her blog serves to discuss her journey as well as to educate.  Very well written.

Life with Sarcoidosis – this blog was very informative when I was first diagnosed.  This gentleman has sarcoidosis, which the doctors think is a possibility in my case.  His posts help me understand that I’m not alone.

Stant Litore – This man is the author of some very amazing books, The Zombie Bible series.  Just the title alone intrigued me.  And then his lyrical prose, his vivid imagination reeled me in.  I like this blog because he writes about the process of writing these books.

Healing from Complex Trauma and PTSD – I originally found this page on FB.  I have PTSD as a result of abusive relationships and this page provided information that even as a nurse, I didn’t know.  The author also encouraged those of us with PTSD to take care of ourselves.  I absolutely love this page and how it has helped me.

Battered Wife Seeks Better Life – This is a very honest account of what it is like to still be in an abusive relationship.

Body art

I got a tattoo when I was 17.  Its a tramp stamp (just like everyone else of that era).  It hurt, but it didn’t scar, didn’t get infected.  I probably had some hints that my body wasn’t normal at that time, namely the intense shaking that wracked my body during the application of the tattoo, but I was blissfully unaware of my eventual chronic illness(es).

I have always wanted another one (or more). Not  because I like marking up my body, but I feel that it is a form of self expression.  I vowed never to get cartoon characters, questionable quotes or anything I wouldn’t want on my body for infinity.

My brother’s friend has a tattoo of a condom wrapper on his hip.  Classy.  That is not me.

One of my friends is an artist.  She is having a “tattoo party” this weekend, and I’m scheduled to get one.  She drew me the tattoo that I want.  Sunshine.  I think it is very fitting.

I’m planning to get it on my upper back, between my shoulder blades.

I have been reading up on tattoos again, and the issue of autoimmune disease came up.  I’m asking the tattoo artist if he is comfortable doing work on someone with my health history.  I haven’t heard back yet.

I guess the main issue is scarring.  Again, it is not know exactly what I have.  I have an autoimmune disease that is primarily affecting my eyes, but they are unsure if it is localized to just my eyes.  I do scar and keloid, but I did that prior to diagnosis.  I had no problems getting my initial tattoo.

I am not currently on steroids or any other immunosuppresants.

Any stories y’all want to share?  Anyone get body ink after diagnosis?  Thank you!!

More questions than answers..

Saw the eye doc today.

Good news?  Inflammation is under control.

Bad news?  The other things he noticed (namely the inflammation of my lacrimnal duct in BOTH eyes) may strongly point to sarcoidosis as being the definitive diagnosis.  Or it could be a completely NEW diagnosis.  Oh and the cataract in my left eye (as a result of the steroid injections) is significant enough to warrant surgery.  Probably in the next year.  Oh and the meds he prescribed for the stabbing pain in my eyes caused by the lacrimnal duct inflammation is $150.

So, again, I am frustrated.  I still don’t have a definitive diagnosis.  He uses the terms “pars planitis” and “ocular sarcoidosis” interchangebly.  I have not had the definitive biopsy that would once and for all settle the sarcoid question.  I’m not keen on getting a biopsy of my eyeball, my doc isn’t keen on doing one either.

But if I can get better treatment by having an ironclad diagnosis, then I’m all for it.

I’m sick of “well, it could be this” or “it could be this other thing that we haven’t mentioned yet”.  I’m sick of the roller coaster.  I just want this to be over with, but I’m realistic that I will probably be dealing with this for the rest of my life.

I feel like hell.  Have been for the past three weeks.  It is hard to tease out what is fibro and what is worsening autoimmune.  I asked the doc and he said its probably fibro.

I just don’t want to go blind.  I know that is a possibility.  As a nurse, I am also aware that doc frequently miss things or think it is one thing and it turns out to be another.

So basically I’m confused.

I know that my vision is worse.  Especially in my left eye.  It is “foggy” on the inside.  I am constantly wiping off my glasses, thinking that they are smeared.  Most of the time the fog is IN my eye.  My night vision is worse that its been since this summer.  And the sun sensitivity is still problematic.  And I now have eye pain.  That is the lacrimnal duct inflammation. It feels like a knife through the top left part of my eye.  Pleasant.

My next appointment is after the holidays.  The doc is comfortable that nothing will need to be addressed before then.  He is also going to confer with my rheumatologist to see if she feels anything needs to be examined further at this time.


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.



Good Lord.  Can it get any worse?

Well, yes it can.  I’m just blowing off steam here.  But there is a new complication to this entire autoimmune disease odessey.

I started with SEVERE back pain on Monday.  Because I have fibromyalgia, I usually ignore most pain and chalk it up to fibro.

Well, this pain persisted.  Its on the left side and higher than my usual low back pain.  It kind of wraps around my hip.

This pain is alternating stabbing and dull pain.  And I can barely walk.

I have been eating Tramadol more than usual and the pain finally prompted me to see my primary care doc.

After finding blood in  my urine, the doc thinks it might be kidney related.


She wanted to do an ultrasound immedietly, but since I have no insurance, this would be cost prohibitive right now.

So she put me on a muscle relaxer and told me to take it with the Tramadol.

She said if the pain doesn’t subside by Tuesday, that I will probably need that ultrasound, regardless of cost.

I know from my merticulous reading on the subject, that if I do have a kidney stone, it might be definitive of sarcoidosis.

I took the muscle relaxer last night, along with Tramadol, my usual drug cocktail and my weekly methotrexate dosage.

I woke up with the pain again.

I’m scared.

Really scared.

I haven’t told my husband yet, but since it is a holiday weekend here in the states, I can’t do anything about it until Tuesday.

It will be a miracle if we can make rent this month.  We have begged family members to help in the past few months and they have been extremely generous, but they are weary of our requests.

My husband just completed training for a job that will hopefully be full time and provide benefits.  He’s planning to work two jobs this summer to get us on firm financial footing.

The end is in sight.  It’s just these final weeks that are so hard.  I’m seriously terrified about the money.  I do not want to get evicted, we do not have money to move, and the type of apartment we could move in to is in a bad area.

So I’m not to happy right now.  I’m in pain.  I have to make food for the picnic I’m going on with my friends this weekend.  I at least try to do normal things, even if I’m feeling like hell.

Positive thinking:  This kidney stuff may be how I get a definitive diagnosis.


So far, so good..

A week into the new year and I’m doing ok.

Methotrexate hit much harder than usual this past weekend.  Much more nausea and the sensation that my limbs are full of lead.  Basically spent the weekend in bed, which is what usually happens.

Today I drank more water and actually took a 10 minute walk.  I sat outside for awhile and watched Sunshine play with her friends.  She is growing up so fast.  Halfway through kindergarten.

Migraines– I voluntarily stopped some of my meds due to cost.  One of them was to help with my migraines (topamax).  I have been on that medication and Lyrica since 2007.  About two weeks now without them and I think I need to go back on the topamax.  I have had a migraine 4 out of the last 7 days.  But when I refilled the prescription, I found out the hard way that it wasn’t on the list of “approved generics” at the local store.  So instead of paying $5, like I thought I would, it came out to $220.  And now I don’t have it.  I know not to even try Lyrica.  Last time I tried paying cash it was something like $8 per pill.

So I am now going to start looking at those pharmaceutical prescription help sites.  Its clear that I do have a need to be on some of these meds.

I am also getting help from a family friend to organize my medical records.  She is a legal nurse and has volunteered to help me with disability, finding free meds, etc.  It is pretty clear right now that I cannot return to my former employment.  I’m looking at other ways to make myself marketable, but one of the big issues with me is the fog that the meds cause.  And its unpredictable.  Nurses need to be on task, be able to make judgement calls.  And sometimes I can’t.  Sometimes I’m functioning just fine, but if I get to overwhelmed or too tired, I just can’t think.  Even looking at job descriptions the other day completely threw me through a loop.  I just couldn’t concentrate.

So getting help in this maze of health issues is so wonderful.  And even though I am a nurse and the product of two nurses, I still don’t know what I’m doing in terms of applying for benefits and presenting a medical case to the government.

I have also found a website that is completely dedicated to the actual problem I have.  I still don’t have a definitive diagnosis of sarcoid.  But at the last eye appointment, the doc mentioned the words “pars planitis” in addition to the usual terms of “uveitis”.  So I plugged them into the old search engine and I find a website specifically for pars planitis (

Its rare.  I found it through the “rare diseases” database.  So rare the the group on Facebook for this condition only has 38 members.

Finding the website made me feel so much better.  I even wrote to the expert doc on the site and he wrote back.  Although the information wasn’t hopeful at all, it was a step in the right direction.  That doc says that I should do anything I can to get health insurance and that my case sounds very aggressive and that I am running the risk of permanent vision loss.  Fantastic.

But it did help to read the tons of information.  It helped to understand the condition better.  I have been addressing this in the wrong manner.  I have been looking for systemic reasons for why this is happening.  Per the info I have, it  can be idiopathic.  So I am switching my thinking around to focus on just my eyes.

It was also helpful to read that my docs aren’t completely off their rocker in prescribing treatment.  What I am doing is inline with what this website says is the proper treatment.  Again, as  nurse, I don’t 100% believe in everything the docs say.  Even with my eye doc, who is fantastic, I still have the tendency to be less trusting because of my 10 years of working with doctors.

So this year is going ok so far.  I still take it one day at a time, one night at a time.  That’s all I can do.

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 🙂

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 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.