The Good & Bad

Wow! It's been a long time since I logged on! A lot has happened. Basically, Life's been happening and I've been trying to keep up, mostly unsuccessfully, but here we go again. That's the wonderful part of life. Ya fall down, ya try to get back up. It's also the crappy part because you fall down in the first place. 

Since my last post, there's been some good, there's been some bad. 

Good: After the first Epidural injection, I DID have some pain relief. 

Bad: It only lasted 2 weeks. 


A Bit Worse: After my second epidural, I felt very crummy. I hurt, I was stiff, I was exhausted, I had no energy, I had anxiety attacks including chest pains and requiring Xanax. 

The Helpful: My brother extended his stay with me an extra two days until he was certain I would be alright alone. I'm so grateful he came to stay with me and drive me to the injection. 

Good: My daughter and I took a week's vacation in Virginia to visit one of my oldest friends. It was a wonderful trip. We went to a park & nature center. We went to the barn. They convinced me to try riding their horse. I tried. I got nervous and tensed up and poor Dusty thought I meant "Trot!" I most certainly did not mean Trot, but the whole tightening the leg muscles thing was my fault, not the horse's. 

Another Good: Her kids are wonderful! I love them! They were a bright sunlight to see everyday. I was contented to sit and watch them tag along after my daughter and play, and their minds! So Smart! Amazing little beings.   And the dogs!  Love them!


Another Good:  We had some "Girl Time" with the assembly line of hair dying!  I put purple and cobalt blue streaks in Dayna's hair.  Dayna put purple streaks in Lisa's hair.  And Lisa dyed my whole head a strawberry blonde color.  It was fun!



The Very Good: I did my exercises EVERY day I was there! 

The Bad: My diet was leaving something to be desired :-/ I did try. But you can't win 'em all... I gained 4 pounds. It doesn't sound like much, but when you're aiming to lose 2 pounds a week, a 4 pound gain in a week is a 2 week setback. 

Another Bad: I required more pain meds and muscle relaxers than I care to admit just to keep up with them. :-( 

Good: I saw a neurosurgeon who believed he could help me. I swallowed my fear and did some soul searching. I took a deep breath, swallowed, and scheduled a lower back surgery. I can't live how I was, I needed to do SOMEthing, and this was the recommendation. 

The Other Good: I survived the surgery! I came out of surgery in pain, but not as much as I had anticipated. So that was good. I stayed one night in the hospital and came home with a cane the next day. 


The Bad: 7 weeks post-op and I still have pain. It's not as much as prior to surgery, which is good, but still enough that I need pain medicine, anti-inflammatories, and muscle relaxers pretty near daily. And I'm not doing much. Just daily activities and basic exercises. 

The Worse: At my 2 week follow up the doctor said I may need a spinal fusion. I'm having trouble wrapping my head around that one. I was nervous about going in to shave off the offending parts of my discs. The thought of rods and screws and the like in there freaks me out. I worry about what limitations I will have afterwards. I worry I will not be able to rest and recover properly since I live alone. I follow up again this week. We'll see what he says. 

Mother Nature called: I had my back surgery Wednesday, August 24th. I came home Thursday, August 25th. I evacuated due to Hurricane Irene Friday, August 26th. Talk about timing! The evacuation was a bit of a hardship. I stayed at my ex's because my daughter was a barrel of nerves and didn't want to leave me so she talked him into it. I was grateful for the hospitality. My daughter was wonderful taking care of me. The sharing a twin size bed with her for 4 days was not anywhere near as wonderful. :-( The flight of stairs multiple times a day was definitely physical therapy overload. Talk about Stiff and Ow. 

Sakura, 8 weeks old, 1 pound even

The Good: We came back home Monday, August 29th. There was no real damage. The grill danced away from the trailer a bit, but the trailer was standing, no missing siding or skirts, the roof was intact, and there was no flooding or water damage! 

The Bad: NO ELECTRIC! I lit a few candles. Dad brought over two oil lamps and a generator. The generator works one night to give us lights, then died. We used the enclosed oil Lantern with the handle for bathroom trips since it was safer to walk with. We finally got power back on Friday, September 2nd. 

The Good: On Tuesday, August 30th my brother came by and mentioned to my dad that he had a kitten in the bathroom at his house. Apparently a friend found her and couldn't keep her. My brother couldn't bear to see the kitten homeless so he brought her home. He planned to leave for Scotland for 5 months the next day. My daughter caught wind of "Baby kitten" and I got the puppy dog eyes and the, "Can we keep her?" A trip to the supermarket for cat food and litter and a few hours later we had a beautiful little 8 week old baby kitten. Dayna named her Sakura (she says it means Cherry Blossom in Japanese).  

The Bad: She's expensive! PetSmart got us for quite a chunk of change. Initial vet trip did too - Worms, Conjunctivitis, Fleas. A week later we were back for Ringworm. Itraconazole $68. Followed 2 days later by a Lime Sulfur dip and a stool sample that came back positive for Coccidia and another medication. 

The Good: I hadn't quite realized how lonely I was before. Now that she's here, I feel better. I have someone to talk to. She responds much more often than the walls (which proves I have a shred of sanity left). 

The Bad: She responds how most playful kittens respond - with TEETH and CLAWS! Ouch! I am covered in scratches. She'll learn. 

Another Bad: I cannot keep this cat off my counter or table.  


The Good:  We've moved into the trailer in the Highlands!  It's closer to family, cheaper rent, and more room.  It's safer - no drugs or excessive alcohol right next door.  I no longer have to worry about Marlene coming by drunk and high at 3am and telling me to let her in while she calls me Britney.  And aside from a spider in the kitchen, there's no constant bombardment of bugs!


The Bad:  I can't mow the lawn by myself.


The Good:  Dad has offered to do it.  Gotta love Dad!  He told me not to even attempt it, he worries about my back.  He says he is happy to do it.


The Bad:  Move in is slow because of my back, but I am trying.  I try to do a few boxes a day.  

The Good:  I have painted the bedroom with the exception of half a closet and the electric panel door.  Dad came to move furniture for me so I can get those areas.  

Pain Management Follow Up

Last Thursday I had my MRI of my lumbar spine.  I generally have severe anxiety over those things.  I get very claustrophobic in the tube.  I took a half a Xanax about an hour before the test.  I survived :-)  I did have anxiety, it did get a bit bad, but it was much better than the last time I had an MRI and I think I was feeling better by about a half hour after the test.  So, all in all, not bad.

I saw the pain management doctor on Wednesday, 3/9/11.  When he entered the room he asked me what side I had the nerve pain on.  I replied, "Usually the left, sometimes the right, but I think the left is worse."  He put one of the MRI films on the light board.  I said, "Yeah, that's the ugly one.  I think it got worse."  He said it definitely got worse, and he was very concerned about it. 

In my lumbar spine I have two herniated discs.  They have been herniated for over 9 years now.  When it first happened 11/3/01, L4-5 was severe and causing stenosis and nerve compression.  L3-4 was moderate.  When I had insurance those few months between October 2008-February 2009, the orthopedic spinal surgeon had sent me for MRI's of my entire back because he was concerned I might have spinal cord compression.  That's when we discovered the total count was 7 herniated discs, an additional disc buldging, stenosis from C-5 in my neck all the way down, and nerve compression.  The EMG identified my nerve symptoms coming from C-6 in my neck and L-5 in my lumbar spine/lower back.

Unfortunately, without insurance and no income I wasn't able to have any care continued for this.  I had two epidurals in my neck in February of 2009 and then nothing since because the insurance cut out.  Social Services gave me a very limited Medicaid Plan, Plan G.  Since my disability hadn't been approved through Social Security, I basically got the General Assistance "You should be working, we're barely helping you" plan.  It covered the federally subsidized clinic.  The clinic could not help me.  They told me to take Tylenol (which doesn't help at all).  They referred me out to specialists.  Medicaid didn't cover specialists.  Medicaid didn't cover the hospital or Emergency Room either.    Plan G was terminated in September when my Disability was approved.  Social Services then told me that I no longer qualified for Medicaid.  I had NO coverage at all until I was eligible for Medicare.  I canceled all my appointments and weaned off all of my medications.

I tried for 2 YEARS to get into a charity clinic.  Cooper Hospital in Camden had neurology and rheumatology clinics.  I was seen in both, neither doctor could help me.  Jersey Shore in Neptune "has" a pain management clinic.  I had my epidurals there.  They confirmed they had my records.  They told me I couldn't been seen without THEIR medical clinic referring me in.  I called for an appointment.  No luck, constantly went to Lita's voice mail.  Some days her mailbox was full and it hung up on me.  Other's, I left a message.  Lita never returned my calls.  Lita never answered the phone.  I tried UMDNJ in Newark beginning last May, 2010.  They got my previous records, and never called me.  I had no luck getting through.  Finally, last September I received a message.  They had my records, did I need an appointment?  I called the number they left.  I was informed that I was not in the computer so they could not schedule me.  I called the pain management line again.  No help.  They promised to look into it and call me back.  Nothing.  For three months I went through that red tape run around.  In January, one of my calls was finally answered with, "The pain management clinic is not accepting new patients. We can't make an appointment unless you're in the system."  I was not.

In February, Medicare kicked in.  Social Security takes my premium right out of my disability payments.  I signed up for the AARP Medicare Complete HMO/POS plan.  I filed the application for Extra Help and receive the full subsidy for prescription medication help.  My co-pay for prescriptions is $2.50-$6.50 per prescription.  HUGE help over what the regular Rx plan copay is.  I pay $15 for the primary doctor, and $35 each visit with a specialist.  I pay 20% of all other costs, I believe.  The more I use this, the more I'll know.  At this point, I question what my actual costs will be.

So, back to the follow up visit.  L4-5 seems to be resorbing a little on it's own.  Good news.  Although it's taken nearly a decade, any improvement is good, right?  That's the good news.  The bad news is that L3-4 has gotten seriously worse.  The disc material is now occluding about half the canal and definitely pressing on nerves.  The doctor said I "NEED an epidural."  No question.  No "maybe an epidural might help the pain."  The plan at this point is an epidural, probably two, possible three, and we hope it shrinks the herniation a bit.  If it doesn't, I need to see a spinal surgeon about having it removed.  It cannot be left like this. 

I have scheduled the epidural for 3/24/11.  I figured that might be enough time to find a ride.  The doc wants to use a little bit of contrast dye to assure the injection gets the medication right where it's needed.  I am allergic to shellfish.  There is a cross-sensitivity between shellfish and the dye.  I have to premedicate the night before and the morning of the procedure with 50mg of Benadryl (25mg usually knocks me out for several hours), 20mg of Prednisone, and a Pepcid.  Then, because of my anxiety issues, I have requested sedation.  The last epidural I had resuled in me having a panic attack on the table, the doc not being able to get the needle where she wanted it, and SEVERE pain after.  I am hoping the sedation helps avoid that and any complications from it.  Therefore, I absolutely cannot drive myself.  Even if I take a taxi, the doctor's office requires me to have a "responsible adult" accompany me and will not perform the procedure without my company checking in at the desk. 

I have a couple of irons in the fire, no confirmed ride yet.  And everytime I think about this, I can feel the anxiety building.  I'm trying not to think of it much, and trying to stay calm and hopeful and trust the doctor.  In the meantime, he did give me a prescription for some pain medication.  I have taken it more than I thought I would.  It helps a little, but I am still having trouble with the pain and some difficulty walking.  I am also noticing the spasms more.  I guess I was hurting so much before I didn't recognize them. 

First Pain Management Consult

I saw the pain mgmt doc last Wednesday. Quick visit. Not too enlightening.
Caution: Sarcasm ahead...


1. I "definitely have some chronic pain issues..." Really? 

2. I have nerve involvement. It was evidenced by differing sensations between my feet. One side was WAY more sensitive than the other when he poked me with the pointy thing. We knew this. EMG 2 years ago confirmed it is from the stenosis, disc herniation and nerve compression at L5.

3. My MRI is old. Well, that's what happens when you have no money and no insurance. You can't get care.

4. "You do know the rest of your back is not normal either?" Yeah, thanks, I was aware. It's a mess.

5. "You won't ever be 100% again. I don't know if we can get you 'good,' but we can aim for 'better' anyway." :-(

6. "I may have to refer you back to the physiatrist for meds. I am not sure anything I can do will help. We can possibly try injections, but you may need them every 6 months for any sort of relief." Not thrilled with this possibility. I'm thinking it's a heck of a lot of repetitive trauma for my already weakened spine. Imagine, injections every six months for the rest of my life? That's 2-6 injections a year, since they usually do injections in groups of 3. In ten years that's 20-60 injections! TOO MUCH!

Rx: steroids for 6 days, a new MRI, then we see how much worse the back has gotten and where we go from there.

Those who pray, please do. I have been in chronic pain for 9 years now, it's been disablingly severe for three. I can't take this anymore. I want "life" back.  I am tired of not being able to do the things I need to do, like laundry, food shopping, cleaning, cooking, etc.  I would like to be able to do that, and then progress onto some things I want to do.  The things that make life, well, "life."  Worth living and all that.


Update: I began the steroid on Thursday.  I am almost done with it, two pills left.  The results are inconclusive.  By itself, I noticed NO difference.  Combined with more Ibuprofen than I care to take, it seemed to make the Ibuprofen slightly more effective.  The definite cons are the stomach side effects.  The steroid is bitter.  The Ibuprofen is an NSAID and not gentle on my tummy.  I have issues with gastritis and reflux.  These two things combined have really set that off. :-( 

I got the prior auth for the MRI, I just have to call and schedule it.  Here's hoping!

Wonderful Start To A Weekend

Friday, January 28th 2011
HAPPY SWEET SIXTEEN GRANDMA!  (again :-)

I finally made it to the bank.  I sent a message to Bryan asking if Dayna could stay with him this weekend since I am still displaced.  It's really not a good situation here.  We'd be sharing the couch, my mom would get annoyed at us in the way, and Dayna'd be bored out of her mind. 

I HURT!  I had to shovel out the car from over a foot of snow yesterday.  I only have one pill of pain medication left, and one muscle relaxer.  I'm near tears.  My step-dad thinks he's being humorous telling me to "stop making so much noise" when I move because I cry.  :-(  I can't handle this anymore.

I talked to Aunt M.  I am so glad to have her in my life.  It means so much to me that she hasn't given up on me yet.  I feel bad though.  She comes up with great suggestions.  The problem is, so far what's come up I have already considered so I feel like a negative schlump when I try to explain why it won't work.  I don't feel like I can verbalize the reasons well enough.  I worry how that comes across.  And I HATE that I always end up crying!

Research and Repairs

Wednesday, January 26th 2011
The landlord called me just before dinner time to update me.  He said he bought the carpet, they'd put it in tomorrow.  They repaired the sheetrock in the bedroom and the guy would finish it up and paint tomorrow.  he told me they're repaint the dining room and kitchen ceilings, too.  I asked if they had water damage since they were the ceilings that REALLY leaked.  He said no, they were fine.  :-/  Something doesn't sound right to me.

I looked up a lot of information on the internet while I was at mom's.  I researched the Board of Health and their regulations.  I called them.  The environmental inspector informed me the bed might be fine since it was dried rather quickly.  He said as long as it doesn't smell like mold, it's ok.  He advised me to throw out any food that got wet, or may have gotten wet.  He said the can's should be fine, but depending on the packaging, other stuff should be discarded.  He also said that if the dining room carpet doesn't smell like mold, and it was dried sufficiently, it should be okay.  The apartment kind of smelled like mold before this, I'm doubting that carpet is ok, but whatever.

I also looked up the Housing and Code Inspector's number.  I read through some general guidelines the town ordinances provide for.  I looked up New Jersey Legal Services, per a friend's suggestion.  I read through the rent guidelines and responsibilities.  I reviewed my lease.  There IS a clause in there stating that if the apartment is damaged through no fault of mine, I am entitled to a rent abatement for the time the apartment was uninhabitable.  According to lsnjlaw.org, I have the right to take the matter to court even if that wasn't in my lease, and ask the judge for an abatement.  Good to know.  I wonder if I can get a credit for my electric bill considering how much electric they're using on my bill this week (all the lights on and no one there, three fans, the shop vac, etc.).

Thursday, January 27th 2011
I never heard from the landlord.  I drove down to the apartment to get more clothes and food.  the maintenance guy was painting in the bedroom.  All of the furniture is moved, yet again.  The new carpet went in.  I asked about the closets.  He said no, they were fine.  I said they were wet the other day.  I reached in and felt the carpet, still damp.  I'm being lied to, whether it's intentional or not, I don't know, but I'm wary.

I asked about the dining room and kitchen ceilings.  Were they ok?  Nope.  The maintenance guy poked a hole in the dining room ceiling, the insulation is wet.  After seeing that, he cut a hole in the kitchen.  That's wet and soaked too.  He has the sheetrock outside in the common hall.  So they'll be fixed tomorrow?  "I have to see if the landlord wants me to do it."  Hmmm...I'm thinking if the landlord says no, I might have to call legal services or the housing inspector.  Drat! 

The Super came in.  He was on the phone, checking things, talking in Spanish the WHOLE time.  I have no problem with Spanish, really.  But when you're in MY apartment, discussing repairs and ME, Please speak in a language I understand.  It's just rude not to.  When he hung up I touched base with what's going on.  He said they're going to fix the ceilings.  I mentioned the closet carpet.  He said it was fine.  I said no it wasn't, I discussed it with the landlord.  The Super went to check, then started talking to the maintenance guy IN Spanish!  How rude!  All I know is the maintenance guy made a face and said "now" (I know that word, thanks Adria), and the super said "No."  A little more incomprehensible prattle and I was standing there wondering if their conversation went like this:

Super: She's worried about the carpets.  Can we change them?
Maintenance: Now?!?
Super: No. Tomorrow.
Maint.: I don't want to move all that stuff.
Super: So then don't, just make them look dry so she doesn't complain.

THAT would be my luck.  Whatever happened to whispering behind your back?  At least then I'd have a fair chance to eavesdrop!  I wonder what proper etiquette rules are in this situation.

They said it would take a few days.  I grabbed my stuff, and left.  Back to the trailer I go!

Paging Noah

I know I've updated a bunch of people already, but for continuities sake (even though I haven't blogged in months), I'm recording this episode here.

Monday, January 24th 2011 @ 2pm
I was all set to go out and run my errands.  I had my bank stuff all set to go, my bag packed, my keys and cell phone were on the table. I walked halfway to the closet to get my coat.  I stopped short and thought, "Since I am going out, I should return my library books.  I wonder if the next in the series has been returned yet.  If it has, I'll go in and get it, otherwise I'll use the drop box in the parking lot."

I sat down at the computer and pulled up the library's online catalog.  As I was sitting there, I heard a strange noise above me.  I figured maybe the girl upstairs was doing something.  Then I heard a strange noise from the kitchen.  I got up to investigate.  There was a tapping sound coming from the cabinet above the stove.  I opened the cabinet.  It was still dry, but the tapping was DEFINITELY coming from up there.  I began to unload the cabinet.

Then, on the other side of the kitchen, the cabinets let loose like Niagara Falls (I've never been there, but I've seen pictures).  I grabbed my phone and called the super.  I put whatever I could under the falls in a lame attempt to "catch" the water before it made a mess: A vase, an old ceramic bamboo planter (sans bamboo), tupperwear...  I climbed the step-stool and attempted to save my food!  "Attempted" being the operative word.  Attempt: Unsuccessful!  Total Failure.

As I was emptying that cabinet, the kitchen light began leaking.  It was streaming down.  I threw a 5 gallon bucket under it and went back to attempting to save my food.  I unplugged the microwave (I can't lift it to move it).  I moved the coffeepot.  The toaster is...well, toast.  The counter, despite my tupperwear, et. al. was a pond.  The floor was wet.  I threw a towel over the electric stove because that cabinet was leaking into the stove top.

The dining room ceiling let loose next.  I took the garbage bag out of the kitchen pail and threw the pail under to light fixture.  My table was soaked.  All of my mail, tax forms, bills, cards, notes, agenda... I tried to dry off what I could.  I ran to the bathroom to get another towel.  My jaw hit the floor.

My bathroom was raining, too!  There was a half inch of water on the floor, it was streaming down the walls, and falling just like someone turned the shower on full blast from the middle of the room.  It's a drop ceiling.  Every edge was streaming!  I threw an empty tote bin un the center of the room to try to contain some of it, but it was a lost cause.  It was pouring so badly that stuff UNDER the sink in the vanity cabinet was saturated.

I called the super again and reiterated that this was not a little leak, and I need help, NOW.  I couldn't keep up with it.  After an hour, I gave up and sat outside.  Two men came to turn the water off.  They went upstairs.  Thirty minutes after, a man came to my apartment to look at the situation.  He told me the owner was upstairs and would be here soon.  I pointed out all the leaks, all the wet carpet areas, including the bedroom.  Later, I found out Dayna's bed, my curtains, and some other things in the bedroom were wet and damaged.

At 5pm, I sat on the couch and stared at the wall in shock.  The super came by and said the guy would come to fix the pipe around 7 or 8pm.  Until then, I had no water, aside from what was leaking out of the ceiling anyway.  I knew I lost most of my food.  I had no idea whether Dayna's bed would be salvagable.  And I knew it was going to be a massive cleanup that I didn't think I could handle alone.  My back screams at me for routine cleaning.  This?  No way.  Not right now.

A friend called.  I burst into tears on the phone.  After we hung up, I stared at the wall in the living room some more.  It was the ONE room that didn't flood.  I called my mother.  She asked how I was.  I burst into tears before I was done saying, "Not good."  I asked if I could spend the night at her trailer.  I packed an overnight bag and began the hour drive north.  I missed the bank, but I had over 1/4 tank of gas and enough for tolls (ok, and a #1 at Roy's, a girl's gotta eat).

Tuesday, January 25th 2011
I called Dad.  I stopped by his place.  He put gas in the car for me so I could get back and forth.  He also gave me $20 so I had money in my pocket.  The past couple of years, he has the ability to remain calm no matter what the situation seems like.  His response to the flood was, "We never know why God does things.  Obviously, you weren't supposed to be there this week.  Don't worry about it."  MUCH easier said than done.  I was a nervous wreck!

I drove down to Bayville.  I parked in *my* spot.  I shoveled the thing, numerous times, and put down copious amounts of Ice Melt.  It is mine until the snowy weather stops.  I get VERY upset when I come home and someone else is parked in it because I have difficulty walking some good days.  On a 2 inch sheet of ice topped by another few inches of hardened snow, it's near impossible to not fall or hurt myself.  I turned the engine off.  I looked at the building.  I took a deep breath.  I managed to get out of the car and walk in.

My door was open.  Not just unlocked, but OPEN.  I walked in.  All of the lights were on.  My furniture and belongings were piled in the livingroom to the point I had to climb over stuff to get in.  I wasn't happy.  I called out.  No answer.  The dining room carpet was half pulled up.  There was an industrial fan UNDER the carpet to dry out the padding, and another one on the opposite side of the room aimed along the top of the carpet.  My dining chairs were ON the table.  Yuck.

The kitchen looked like an abandoned ghost town.  The cabinets were open and barren, just as I'd left them.  The whole place smelled of musty mold.  I braved more.  I walked to the "hall," the little section where the bedroom door and bathroom door are.  I looked in the bathroom first.  Still wet.  Junk in the tub.  Mops left willy-nilly.  debris on the toilet seat, tank top askew.

I went to the bedroom.  The carpet was torn up exposing a nasty, wet, hardwood floor.  All of my furniture was moved.  My bed was on the opposite side of the room with stuff piled on it (in my sheets, really? ugh!).  The dressers were back to back, or front to front, so I could barely get in to get any clothes.  Dayna's bed was disassembled and the mattress was standing up in front of an industrial fan.  The closets were blocked with furniture, there was no way I was getting anything out of there.  I was happy I had worn my hiking boots yesterday.

I grabbed what I could manage of clothes, I grabbed a box of Cheerios and a few other food items I thought might be safe.  I couldn't find my laundry basket.  I called the landlord.  He said they would put new carpet in tomorrow, they would repair the sheetrock on the bedroom ceiling, and hopefully I'll be back in soon.  i asked about the bedroom closets, were they putting new carpet in there?  He said they were fine.  i said no they weren't, they were soaked too.  He assured me that he'd check.  He said, "After that, anything left we can do around you."  I was not as optimistic.  I sat in the car and called mom and asked if I could come back.  I cried.  Again.