Sunday, January 29, 2012

Intercostal Muscle spasms and neuralgia

Finally, after all day in pain, I had my husband take me to urgent care.  We are lucky that there is one within 10 minutes of our home that is open until 10pm on weekends. As our insurance will not cover what they do not consider to be emergencies at the ER.  We simply couldn't take that risk.

The doctor said I was suffering from Intercostal muscle spasms.  Which means that the muscles between my ribs are spasming.  In my case, she feels that it may be caused by one of two things.
A) The connective tissue between my ribs is still significantly inflamed and has caused them to spasm.
B) The spasming is a precursor to Intercostal neuralgia, cause by shingles.  Usually the pain and violent spasms show up before a rash.

I had the chicken pox at 9 months of age, so shingles is a possibility.  Also, MTX may have knocked down my immune system (indicated by feel pretty good all week) just enough for the virus to flare.  If that is the case, it is a double edged sword.

Moist heat

Wait and see if a rash appears. Follow up with my rheumy early this week.
*le sigh*

Last night was rough. Fortunately, when the meds kicked in, I was able to get some rest.

Saturday, January 28, 2012


This morning, I went about my normal routine.
Made breakfast for hubby  and I, emptied dishwasher, reloaded it while breakfast was cooking.
Sat down to eat.  Twisted slightly to move a chemistry textbook that was digging into my knee.

Next thing I know I am doubled over with my ribs in excruciating pain. Any move makes it worse. Tears came instantly.  Cursing at the pain, I made my way to the bathroom to grab morning meds and pain meds.
I tried calling my rheumatologist via the Nurse on call, but they put me in touch with my PCP. Who said go to the ER.  So I called back and told them I specifically need to be in touch with my rheumatologist.

It took them a feel minutes to get her on the line, but the nurse got my doctor on the line and called me back.  She's calling in Medrol.  Hopefully, it will quiet down the costochondritis, if not I'm suppose to go to the ER. 

Normally, I can endure high levels of pain without uttering a sound.  This is so sharp and quick, I could not help, but cry out.

Valium has taken the edge off of the spasms, but barely so. As long as I sit still and keep pressure with an ice pack, don't breathe too deep, I can stand it.

I know that they are covering their asses telling me to go to the ER and that the pain is bad enough, I probably should. What are they going to do? Take Xrays and give me narcotics.  While I would welcome relief from the pain, I need to buy groceries.
Glucocorticoids are gonna have to do it.

Thursday, January 26, 2012

Paraffin Bath Treatments . . .

This is something that many of us could do at home.
My mom has a paraffin spa/bath that she often turns on a couple hours before I come over.
I have never tried wrapping my hands, but you'd better believe that I will be trying this next time I visit my folks!

Friday, January 20, 2012

Filing for Disability~ "When You're not Sick Enough"

 This is a topic that comes up all too often in my online support group.
We don't look sick on the outside, so we must be fine.  Right?  Wrong!

Every step I have taken in the last two years has been directly 180 degrees away from filing for disability, even when I couldn't get out of bed to pee or take more pain meds.  Mentally, at this point, I just cannot even think about it.

That said, I completely support anyone who is filing because their bodies just cannot take it anymore. 

For me, I have to believe that the science of medicine will not fail me.  I have made it through years of status migranosis, only to have a six month break, before a car accident took everything away from me.  My career, my self esteem, my spark.  It was a dark and scary place.  I couldn't LET the pain win, but what I was really doing was not allowing myself to heal.  I would cry the whole way home, every night from work because driving was excruciating.  Had shoulder reconstruction, which only fixed 10% of the problem (an impingement) and was left with scar tissue surrounding a nerve plexus.  At which point I was told, this was as good as it gets.  We cannot help you any further.  Even though I knew better, I believed them.  So I quietly suffered for a few years, I was tired of fighting for recognition that I was in excruciating pain.  Finally, I was suffering from a flare in my neck that I couldn't manage on my own and sought help from my PCP.  This led to spine specialists and pain management.  The spine doc told me that he couldn't do much, so here is an Rx for Neurontin.  By dose three I was in the ER for anaphylaxis.  22 hours later, after the rescue meds wore off I was back in the ER via ambulance.  After which I was written off by the Spine Doc who sent me to a chronic pain program.  Who, while they successfully treated the nerve pain, refused to fully evaluate my musculoskeletal issues.  No one in this hospital system would treat me because of the doctor who had been in charge of my care at the program.  Apparently, he has a bit of a God complex, despite being a Psychiatrist who specialized in Chronic Pain and gets pissy when others treat his patients.

So another year went by and I finally switched hospital systems and sought treatment with a physical medicine doctor. First thing I told him was, I don't want narcotics.  I want to be evaluated, something is wrong.  He agreed.  I started Physical Therapy that focused on pain management and breaking up the scar tissue that was the root of the issue and had left me with Myofascial Syndrome.  I was also referred to an osteopath.  A year ago, the osteopath had just finished a session (this man is a miracle worker who needs to be cloned) on my spine.  He said, something isn't right, you should be feeling better.  We discussed my symptoms: Weight gain, Horrid Fatigue, Vague flu-like episodes, fevers, diffuse joint pain.  It had all come on gradually, while I'd been dealing with another slice of hell.  It had gotten to the point where I couldn't tell you where one pain ended and another began. I was at the bottom of a cauldron full of dark black goo.

He decided that I needed to be screened for autoimmune diseases.  My Sed Rate was 58, my CRP was 1.5, but my RF was only 8 and ANA, etc were negative.  He told me, your case isn't clear cut, but you need to see a rheumatologist.  You won't get better overnight, but there have been so many advances in rheumatologic medicine, you can be treated.

Three doctors later, I have a vague diagnosis and am in my second week of a chemotherapeutic drug called Methotrexate.

While most days I don't feel great and it is really hard to remember that I AM better than I was a year ago.  I can walk. My morning stiffness only lasts 1.5 to 2 hours vs 3 to 4.  I only need a 1 hour nap per day. Where before I could sleep 3 or 4 hours in the afternoon and still head to bed that night.
I still don't sleep through the night, pain wakes me up, but it IS better than it had been.

All of this came to mind after reading this article: When You're Not Sick Enough on But You Don't Look Sick

Someone in the comments section recommended the link below.  I recalled, from some of my darker times over a year a go, perusing this website.  Most Disability cases get refused the first time, especially when the person is filing without legal assistance. 


THC for thought

I don't understand what legislators have against something that can potentially support so many, therapeutically, with fewer side effects.
Arthritis & Medical Marijuana

Most don't care if they have to pay taxes on it.  I know I don't.
It is a plant that actually enriches the soil.  Commercial Hemp (which is also illegal, despite the fact that it contains no THC. Simply because it puts off the same heat signature and cannot be differentiated from marijuana by DEA flight inspectors) is a completely usable product.  No waste.  Food, paper, fabric, etc.
The list goes on and on.

Who loses? Pharmaceutical companies and everyone who's pocket is lined by them.
Not the patient.

With my career, being a full time student who uses student loans, etc. I cannot justify using something that is illegal to treat myself.  However, I can hope that one day this silliness will pass and we will have relief.
This is available at
Hmmm . . . in some states it is legal for chemo patients to be prescribed legally . . . . Just saying . . . . Cheers folks.
Just popped my second dose of Methotrexate. Mentally crossing my fingers, hoping that I don't feel horrible tomorrow.

Wednesday, January 18, 2012

Day #2 back to school.

Day one was rough, I was on campus all day, from 9:30a to 6:30p.

Fortunately Wednesdays and Thursdays are semi-light, class wise.  Which means I can rest between classes and get some studying done.  So when I am home, I am HOME!!!!

Sorry for the short post today I'm exhausted, need to shower and have a phone meeting with a classmate from my first degree regarding Shaklee Vitamins and Supplements.  She battles an autoimmune condition and utilizes many of their products for support.

Monday, January 16, 2012

Customer Complaint . . .

Do not use this company for your swimsuit needs.
I placed an order on 1/9, because I needed a swimsuit for Physical Therapy.  On 1/11, I received an email citing that part of my order was out of stock and could I please contact them to select a suitable replacement.

I did so, but there phone service kept cutting out and they were having problems with my card.

I requested that my order be cancelled. I was told that it had been.  Later that day, another charge from them appeared.  I called SSFA, but could not get through to a person; I sent an message through their website while on hold. So, I called my bank to dispute it, while I was on the phone with my bank, the charge was rescinded.  Later that day, it disappeared from my ledger.
Then over the weekend, the charge re-appeared on my account.  I just got off of the phone with my bank & SSFA. My bank will refuse the charges as soon as it is a firm charge.
SSFA told me that they couldn't stop the order, so it was shipped.  Therefore, I was charged.

They couldn't help me unless they received the product back.  Why was the product shipped?  I cancelled the order over the phone with one of their CSRs on 1/11/12.  It was shipped 1/12/12.

I have filed a complaint with the Better Business Bureau of NJ.
UPDATE 1/18/12
The manager called and is issuing my refund. I have notified the BBB through their claim service. 
The emailed refund receipt cites that two bottoms and a top (I had ordered one top and one bottom) were shipped . . . really?  They screwed up their screw up.
I am not confidant in this, but I feel that if I had not contacted the BBB, I would still be chasing them.

It's hard enough dealing with the horrible meds to treat the horrible condition, but then to deal with horrible service for an item that you needed so you can feel better (Physical Therapy)!  

UPDATE 1/19/12
So I checked my bank ledger online this morning and the charge in question has dropped off, but then another charge appeared firm (not pending) on my account!!!!!  Horrible, Horrible Company.
I contacted the BBB of NJ AGAIN! 
UPDATE 1/24/12
So today SSFA refunded PART of the amount to my account today, minus $14.95.
I own a small business and have worked in many positions where a refund has been in order on behalf of user error with the machine. Whether said machine be a Point of Sale Terminal, an eTerminal or Quickbooks Pro.  I know that it is NOT that hard to process a refund, I've done them for clients, and when an error has been discovered through audit of charges as an employee/admin.
I have used the lovely "Print Screen" function and Photoshop to save these transactions as jpeg files. Uploaded said files to Public Folders in my Photobucket account and submitted a link to each to the BBB of NJ's eBinder of my Complaint.
Tomorrow, not only will I be contacting my bank, but I will also be contacting the manager, Wendy, at SSFA, LLC & the BBB of NJ.
People make mistakes.  It is part of being human.  However, this is downright negligent on their part!
UPDATE 1/25/12 
I received the following response from BBB of NJ:
***The company has decided to stand by its original decision regarding your complaint.

We regret that we have been unable to assist in resolving this complaint to the satisfaction of everyone involved. Your complaint will remain on file and will be used by BBB when preparing a report on the company.
 So, they are standing firm in they decision to refund an unauthorized charge to my account?!!!!
I was on hold with the Fraud Dept at my bank, who was able to contact SSFA and the funds will be refunded today and should appear back in my account by tomorrow. 
 Update 1/26/12
Overnight, the refund had posted to my account, as a "Credit for Debit Card Dispute".  Yesterday evening I received the following email from the company's Social Media Consultant:

All has been handled.  I spoke to the "Powers That Be" and your $14.95 has been refunded to you.  It was an oversight on our part and we are terribly sorry for the frustration.  Would you do me the kindness of posting on the thread that we have on Facebook stating that we did resolve your issue so that I can send it to the BBB of NJ and let them know we DID handle this for you?  Or, you can just write me back in this letter and let me know if we have satisfied you with this resolution.  I would so greatly appreciate that.

As a token of apology, when you order from us again, please use the code "XXXXXXX", which is my personal code.  That will get you free shipping on your next order. There is also a flash sale going on right now with up to 50% off all merchandise. Details are on our FB page.

If you have any problems with us in the future or need any questions answered regarding our merchandise, you have my personal email now.  Make sure to contact me and I will take good care of you!  Please write me back and let me know you got this email.  Thanks!
 I am saddened that it had to come to me posting on their Facebook page AND contact my bank's Fraud department to get this resolved.  I was very close to contacting their merchant server regarding the situation.  Fortunately, I did not have to.
Please Note: The free shipping code and my name have been removed from the response.



You've probably seen the chair rolls, the wrist bumpered mouse pads, etc.  Heck, you may have even been sent home with stuff from PT or OT.  Lord knows I have.
Whilst out shopping with a friend at a large craft store, I came across the Creative Comfort line (See Links below from Amazon).

She and I both have orthopaedic issues.  She's actually scheduling to see my new rheumy shortly.  All of our issues started after injuries. Back Pain, Joint Pain, etc.

We both thought this would be extremely useful in our homes, Creative Comfort Posture Pillow.  We will both be buying them.

Another item I found, Creative Comfort Elbow Rest, felt wonderful, just rolling it around and squeezing it in my hand.  Almost like a massage on all my painful synovial joints.
I've also found that holding a phone can be torture.  I purchased this, Mono Ear Bud, one for the car and one for home.  It works well, not like inline mics of days gone by.  My mom can hear me well, weather I'm driving (minimal background noise) or at home.

I will be posting pics of other ways to help stay comfortable while doing things around the house.
Have a great day.  Please take a moment to remember Dr. Martin Luther King, Jr. today . . . . "Free at last . . ."

Saturday, January 14, 2012

Marijuana for pain management . . .

Just received this link: Marijuana Smoking Does Not Harm Lungs, Study Finds, NY Times

Since marijuana is illegal in my state, for medical use or otherwise, I do not use it.  However, should it become legal, I would gladly purchase it from a dispensary and pay the necessary taxes.  It is healthier than many of the other toxic substances we use to treat our conditions.

FWIW . . . .

How to explain to others . . . .since outwardly we don't look sick.

Hands down, I still like the Spoon Theory, when trying to explain how you feel. Christine Miserandino's The Spoon Theory  This is a useful tool for many, as it can apply to nearly all "invisible" diseases: Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, Chronic Depression, Lupus, Cancer, etc.  The list is longer than my hands will let me type.

I have a bumper sticker on my car from, but cannot seem to find it . . . here's one, though Autoimmune Arthritis Awareness bumper sticker from the IAA Movement

I do have a handicapped placard, for use at school and if necessary while out and about.  I have gotten some pretty nasty looks from others, when I park there.  Keep in mind, if there is a non-handicapped spot close by, I will ALWAYS park there. So as to leave the handicapped spot available for someone who may not be as lucky to find a close spot when they need it.  My Bumper Sticker says, If you want to know why I am parking here, ASK.  I am not lazy, I have autoimmune arthritis.  Disability does not have an age requirement.  On good days, I park as far away from the door as possible; taking full advantage of my body allowing me to move without pain (or with little pain, since I am rarely pain free).

Zazzle also has some amusing shirts (note, I am not affiliated with any of these sites financially; I just find them helpful). My favorite is "Today my immune system attacked my own body.  What did yours do?"

It is really hard to explain to someone who really doesn't know anything about autoimmune conditions, how bad things can really be. 

The fact that you're exhausted, which is due to the overwhelming percentage of cytokines going through our blood stream (others feel this when they get the flu or a bad cold with a fever; it is a hallmark of the autoimmune response), without much activity.  Your low grade fever. My joints rarely swell, so it is really hard to tell outwardly that I feel like crap.

Couple this with not having a true diagnosis, or still waiting on a diagnosis, and you may find very few people who understand.  Some may not even believe you (I hope you never have to go through this).
There are so many support groups out there . . . I hope you find one that keep you up, when you are at the bottom . . . Have a great weekend.

Friday, January 13, 2012

Arthritis Awareness

There are so many causes for Inflammatory Arthritis, so many specifics that are not quite understood by science yet.

I really like the blog

I found this store this morning

It is snowing and the weather like this usually make me hurt more.  However, yesterday I was dealing with the side effects of my first methotrexate dose.  It wasn't horrible, but it certainly wasn't pleasant. 

So with school starting back up this week, I am planning on my next dose being next Saturday.  That way I have Sunday to recover.  Others have told me, that with time, the side effects will lessen . . .

I really don't care, especially if it is just like yesterday.  I just hope that it works.  Hope my body responds appropriately. Oh what I would do to have a day that I could get out of bed on my terms, not have to schedule to wake up an hour before I need to be moving, so I can walk once I am out of bed.

With the weather today, my feet felt crushed before I even got moving.  Especially during my stretches.  When I got up, it was like walking on broken glass.  Hard to balance.  However, it has been worse.
Have a good weekend all!

Wednesday, January 11, 2012

The Monster Has a Name

I saw my third rheumy today.  She was recommended by an acquaintance. She seems like a really good fit.  She's a few years older than me.  I just get a good vibe from her.

She says I have Inflammatory Arthritis, that's as close as we can get to a real name and I am okay with that.  I also have Osteoarthritis (which is being exacerbated by the IA) and Secondary Fibromyalgia.

I started Methotrexate today. 10 mg.

It's been 3 hours since I took it.  So far, no GI upset.
So, we'll see.  I follow up in 8 weeks.