Sunday, July 1, 2012

Methotrexate . . .side effects

So, en lieu of increasing side effects(GI and Menstrual), some which may or may not be directly attributed to the actual MTX or not, I am changing my protocol.

Instead of 15 mg every week, I am gonna see how I do on every other week.

I have been having breakthrough bleeding for about 6 weeks . . . so I began pouring through the NIH archives and I found this article. Which clearly indicates further studies are warranted.

I have been working with my OBGYN Nurse Practitioner about how to proceed. The cramping is nearly constant and getting tiresome . . . I had an ultrasound last Monday, which save for some free fluid (which the radiologist feels may be secondary to a ruptured cyst; which brings up a whole added set of questions) was unremarkable.

My insurance will only cover tubal ligation if it is to prevent a life threatening condition.  I would like to think that getting pregnant while on Methotrexate would fall under this category, as MTX is a category X medication and as such pregnancy is prohibited.
 Comment below if you or someone you know has experienced something similar.
I know that MTX increases friability (fragility, which causes the tissue to weaken), but that doesn't account for the cramping.

Tuesday, June 19, 2012

Hair loss . . .

Some of us begin losing hair while on MTX.  I know my hair began shedding something fierce (worse that its normal drain clogging behavior) when I started.  I found that switching to the No 'Poo Method of hair cleansing helped. (Thanks Simple Mom)  I also noticed that the mouth sores I was getting [from MTX] diminished even further; I think it is from lack of exposure to SLS and SLFS.  I also use an SLS/SLFS free toothpaste alternating with a paste of baking soda and coconut oil (organic).

Sans Makeup. I know that it only looks like an old scar and that I am lucky to not have true En coup de sabre,but I am slightly self conscious about it as it goes back further. 
Anyway, the patch of morphea on my forehead is creeping further into my hairline.  Despite Dovonex and MTX.  
A friend from high school's mom has beat Basal Cell Carcinoma on her scalp, after two surgeries and a radiation regimen.  She was left with a bald patch (Mainly from the skin graft) on top of her head.  To see her, you wouldn't know.  She started her own business several years ago specifically for head coverings for women!  She is awesome!  It allows her time to watch her two grandbabies and help others at the same time.

So, she and I have been chatting back and forth about my dilemma.  She has a few hats that I am going to buy, especially since I need to keep my head covered for protection from the sun.  However, she had bought a few headbands earlier this year for herself, but the were not wide enough to cover the area she needed them to.  She sent them my way and I adore them.  I will post soon to let you know where she got them.

If you or anyone you know suffers from hair loss, I urge you to check out her site!  She is like a second mother to me, I have known her for nearly 20 years.  She was actually the third person I told when I got engaged!
Check out her site: KT's Rags to Riches

Friday, April 6, 2012

Swelling with bony changes . . .

Y is where I had a greenstick fracture when I was 17.  Playing volleyball with a balloon at a friends birthday party.  I know, I know . . . it wasn't the balloon itself, but rather the 6'4" guy on the other side who felt the need to spike the balloon at me.  Anyway, the area has been thicker than the Left ring finger ever since.  It went from being a 6 3/4 ring size to 7 1/4.
If you look at X  it is swollen.  There is bony enlargement on the middle phalanges bone, just distal (towards the end of the of the finger) to the proximal phalangeal joint.

I am including links in this blog, like I do in most of my blogs, so as to help you understand the anatomy of your body.  This helps you communicate with your physicians (especially over the phone) with what parts of your body are problematic at that time.

This started about 3 weeks ago and it doesn't seem to be going away.

Sunday, April 1, 2012

Caffeine and Methotrexate

I have been having stomach pain after my weekly dose for the last two weeks.  Last week, I attributed it to being on Augmentin at the same time.  This week, not so much.

I'm already on Prilosec, 40 mg daily.  I will be calling my rheumy tomorrow morning about this.

In the mean time I looked up additional side effects of food intake with methotrexate.

Apparently, consuming more than 180 milligrams of caffeine per day interferes with methotrexate. Patients who consume more than 180 miligrams per day "experienced significantly less improvement in morning stiffness and joint pain from baseline than patients with low caffeine intake (more than 120 mg/day)."   

I have been consuming more caffeine in recent weeks.  Which could explain my increased morning stiffness and joint pain.  I do know, that I will be carefully examining my caffeine intake and reducing it in the next few days.
Please check out this link, to assess your caffeine intake and see if you can help reduce your symptoms.

Tuesday, March 13, 2012

Homemade Toothpaste

I know I'm not the only one out there with sensitivity to SLS & SLFS (Sodium Lauryl Sulfate and Sodium Laureth Sulfate).
I have already cut them out of my haircare and am using the "No'Poo" Method
Simple Mom
Crunchy Betty

Unfortunately, I am not one of those "I thought I had oily hair and skin . . . .but then found out otherwise", but I knew that . . . my mom and dad both have oily skin . . . as does my brother . . . you see where I am going here.

Any who . . . I have been 'poo free for 6 weeks now.  I did have an initial surge of oil production, but it waned in 10 days.  For weeks three and four I could get away with washing every 4 days.  Now that I've settled in, it's every two to three.  As a "conditioner" I add a 50/50 blend of Apple Cider Vinegar/Organic Lemon Juice, adding 3 tsp to 3 cups of water.  My hair looks great!
My counselor (a guy) remarked on it and wrote down all of the nitty gritty (ha ha, the reason I even mentioned it to him is I had NOT rinsed properly and had leftover baking soda paste behind me ear . . . gritty! :)  )details . . . .

Ok, back on topic . . .

Tooth paste.  My mom had always used a blend of salt and baking soda.  Kept it in a little yellow Tupperware container on her bathroom counter.  She has always had amazing teeth.

I had to cut out a majority of commercial toothpastes due to SLS and SLFS.  So I figured I'd try this:
3 T. Organic Coconut Oil (melts at 76 degrees F)
3 (or more) T Baking Soda
1/4 tsp ground cloves (you can also substitute with 10 drops of peppermint essential oil; I was out, so I used cloves)

Coconut Oil is naturally antimicrobial.  As are cloves and peppermint oil . . .

I'll let you know how it works for me!

Friday, March 9, 2012

Grey hair . . .

Grey strands aren't new to me . . . I found my first three ten years ago . . .
However, until recently, their texture was smooth.

Now, I have wiry strands floating above my crown.  This morning after washing my hair, I went to tweeze my eyebrows and discovered a white eye brow hair!  I called my husband into the bathroom to show him the offending hair before I plucked it out.  He goes, "Maybe it is because you are on chemo?"

He doesn't like that I take MTX, but he understands that it is helping.  He always refers to it as "chemo".  He's scared and rightly so.  It's a serious drug.

I had a follow up with my rheumy on Wednesday.  It went really well.  On physical exam, my feet are still no better, but they were also the first place this disease hit.  Probably where the worst damage is.  She says my condition is stabilizing and feels we can stretch my next follow-up out another month.  So I don't have to go back until June. YAY!  I had a chemistry panel drawn before leaving the facility; I had a CBC a month ago.  They came back completely normal!  So my liver is handling everything well!  As are my kidneys.

Therefore, I guess it is worth giving up a few glasses of wine a week and gaining a few more unruly greys!
Aside: I did do a bit of research and apparently grey hair is a side effect of methotrexate. Boo!

Tuesday, February 28, 2012

Monday, February 27, 2012

Traveling while on Immunosuppresants

A common misconception by those not affected by an autoimmune condition is that we have suppressed immune systems.  In fact, it is just the opposite, our immune systems are hyper-responsive.  After finally being diagnosed, I realized that I hadn't truly been "sick" (caught a cold, etc) in nearly two years.  The times that I thought I was sick were flares.  For me a flare causes the following symptoms: low grade fever (up to 99.5, I typically run 97.4 or so), vague right sided ear pain, flu-like (joint pain, exhaustion, etc).

The goal with treatment of an autoimmune condition is to suppress the immune system back down to normal levels.  Tamp it down, so it no longer views our body as a threat, but not to the point that it does not fight disease.  It is a delicate balance.

My husband has occupational/environmental AND exercise induced asthma.  To get him managed he has been on allergy shots for nearly two years and is almost to maintenance phase, he also takes a long acting inhaled corticosteroid and bronchodilator.   When we get sick, we often inhale the contagion (it can also be ingested or be transmitted by contact in mucous membranes) . . . a common side effect for asthmatics on these types of treatments is rapid onset of an upper respiratory infection that can quickly turn into pneumonia and/or bronchitis.

Why do I bring up asthma in an autoimmune blog?  I bring it up because, corticosteroids are immunosuppresants . . . 

One of our personal requirements for going on vacation is I need to be medically managed.  This reduces the chances of becoming sick while traveling.  We will probably avoid air travel because of the recirculation of contained air . . . not good for either of us.  This situation is hard enough for a healthy individual, let alone a person on immunosuppresants.
The article link I found via cites that methotrexate monotherapy does not interfere with the influenza vaccine, but has shown inhibition of response to the pneumonia vaccine.  It also does not cite methotrexate as an anti-metabolite (which it is, according to and my handy-dandy pamphlet from the pharmacy) . . . Click on "article link" for full text.

Anyway, the short of it is, consult you rheumatologist prior to any travel, but especially with travel requiring anti-malarials, vaccines, etc.  If anything, your rheumatologist may possibly want you on a medrol dose-pak during travel to help ease symptoms . . .
Good luck and happy traveling!

Sunday, February 26, 2012

Medical Marijuana

Do I use marijuana? No.  Would I use marijuana to help with my chronic pain? Yes, but only if it were legal.
There are many individuals, like myself, who have a lot to lose if they were to get caught using marijuana, even if it were for medical use, as the legislation stands at this moment.  We have given up so much to these diseases, we don't mind paying for it, even if it is moderately taxed because it means not only would we not have to worry about legal ramifications, we would feel better.

I feel that, like other mind altering medications and alcohol, there should be restrictions about coming to work or driving under its effects.  Common sense tells us, if we take Vicodin for pain, we shouldn't drive.  There are HUGE legal ramifications for driving under the influence of alcohol.  I feel that at DUI/DWI should be in place for any mind altering medication. 

Heck, most of the meds I take for my health state on the bottle: "Do not drive or operate heavy machinery until you know how this medication affects you."  The same should hold true for medical marijuana.

This year, Ohio has two potential issues for the ballot regarding the Compassionate Care Act.
Please read: 2 Groups push Medical Marijuana
Become informed.  Check what legislation is in effect in your state.  Do what you can to help make positive changes for others.
Check for a local NORML chapter near you. Ohio NORML
We are not looking for marijuana for recreational use, but instead, as medicine.  Up until 1941/1942, marijuana was legal by prescription in the United States.  It's been used as medicine for over 4000 years . . . .

Thursday, February 23, 2012

Weather . . .Ugh

It's raining terribly!

These last few weeks, I've been feeling rather good . . . thanks to my new friend methotrexate . . . I guess it IS worth giving up a few glasses of wine a week.

So the last couple of days I have been feeling crappy.  Nothing other than the weather, has changed.

The semi-reprieve has been nice.  I think that this beast just wants to remind me that it is still there and I'm not done . . .

One can hope.  I will not give up and roll over.  I may not be back to where I was ten years ago, but I will continue on.  With a few modifications!

Yet another . . . .Methotrexate Injectable Update

APP Customer Service
25 mg/mL; 10 mL vial; With Preservative (NDC 63323-0123-10) available.

Bedford Customer Service
Bedford Laboratories has limited quantities available of methotrexate preservative-free 1 gram lyophilized powder for injection (NDC 55390-0143-01)

Hospira, Inc. Customer Service
Product 25 mg/mL; 2 mL vial (NDC 61703-350-38): next delivery end February/early March.

Mylan Institutional
Limited quantity of 2 ml vials (NDC 10139-0062-02) and 10 ml NDC 10139-0062-10) available for emergency drop ship orders.

 The above information has been copied and pasted from the FDA's Drug Shortage List (Updated 2/23/2012, per the site)
Due to increasing demands, because of limited availability from several manufacturers, there has been and increasing shortage of Methotrexate.
Hospira and Bedford Laboratories(aka Ben Venue) are working closely with the FDA to get production back on track.

I will continue to keep tabs on this . . . for all of our sakes.

Wednesday, February 22, 2012

Methotrexate Injectable Update

Here is a summary of the FDA's comments on the shortage of methotrexate.
Copied from: FDA Drug Shortage List
APP Customer Service 
Product 25 mg/mL; 2 mL vial (NDC 63323-0123-02) discontinued.
Product 25 mg/mL; 10 mL vial (NDC 63323-0123-10) available.
Note: if you were receiving the 2 mL vials, you may need to have your doctor call in a prescription to the 10 mL vials.  This item does have preservatives.  It is in high demand because of limited supplies available from other manufacturers.

Bedford Laboratories aka Ben Venue
Bedford Customer Service 1-800-562-4797

Bedford Laboratories has multiple products affected by the suspension of manufacturing at Ben Venue disclaimer icon in mid-November 2011. Availability of all products, including those not manufactured at Ben Venue, is updated as information changes on the Bedford Laboratories website

Bedford Laboratories has limited quantities available of methotrexate preservative-free 1 gram lyophilized powder for injection (NDC 55390-0143-01) and 250 mg/10 ml (NDC 55390-0034-10) with short expiry. Other presentations will not be available until capacity permits.

Hospira, Inc. 
Customer Service 1-877-946-7747 

25 mg/mL; 2 mL vial
With Preservative (NDC 61703-350-38):  next delivery February.

25 mg/mL; 40 mL vial;
Preservative Free (NDC 61703-408-41): next delivery March. 

Mylan Institutional
Limited quantity 25mg/ml; 2ml vial Preservative Free (NDC 10139-0062-02) available for emergency drop ship orders.

Limited quantity 25 mg/ml; 10ml vial Preservative Free  (NDC 10139-0062-10) available for emergency drop ship orders.

25 mg/ml; 40ml vial,Preservative Free (NDC 10139-0062-40) are planned to be available again in the coming weeks.

As additional product becomes available, it will continue to be allocated via drop ship orders. 

Hope this helps you source your medications if your pharmacy says something isn't available.
Note: a majority of the large vials of preservative free will more than likely go to Institutions for treatment of cancer.  

Hopefully, this will be over soon! 

Saturday, February 18, 2012

Prepping for Day after MTX

So, in recent weeks, I have found myself not eating much (and when I do it is easy, not healthy stuff) on Sundays.  I take my methotrexate on Saturday evenings and am wiped out nearly all of Sunday.

Tonight, I am trying something new.  I am going to make a couple of sandwiches, cut up some fruit and make some iced tea.  All portioned out, so all I have to do is grab and go.  I am curious to see if I will feel better by eating a bit and drinking more.

I'll let you know how it works out. . .
Regardless, I am going to inquire about injectable versus tablet forms the next time I see my rheumy (in 3 weeks).

Methotrexate Injectable Shortage ~ Not just Preservative Free . . .

FDA Drug Shortage List
According to the update on the FDA's Drug Shortage List (updated on 2.16.12), it isn't just the preservative free that is in short supply.  Though the Preservative Free formula is in the shortest supply.

APP has discontinued production of their 2 mL vials of methotrexate (with preservative), thus leaving their 10 mL vials (with preservative; same concentration) in higher demand.  Hospira is continuing to make their 2 mL vials (25 mg/mL).  However, with the decrease in total quantity available, these are in short supply.  Hospira is expected to release more of the 2 mL vials before the end of the month.
Hospira's Customer Service line is: 1-877-946-7747
APP's Customer Service line is: 1-888-386-1300
They should be able to head you in the right direction, if your supply is running low.

Note: If you take more than 25 mg per week, you'd be better off trying to source the 10 mL vials.  Since they offer a total of 250mg of methotrexate per vial.  Since it contains preservative, there are multiple doses per vial.

Other drug shortages that may affect you:
The generic form of Zofran (Ondansetron) injectable and Volataren Gel are in short supply.

Friday, February 17, 2012

Methotrexate Injectable Update

This Just in:
Ben Venue Laboratories shipped out several lots of injectable this week!

Good News for many!
Have a great weekend folks!

Thursday, February 16, 2012

Amitryptiline Conflict

Yesterday, I had a follow up with my chronic pain psychiatrist.
In December, my rheumatology fellow (former) changed my meds a bit.  I'd been on Cymbalta for 3 years, to treat nerve pain.  A result of brachial plexus trauma; actually, scar tissue around the nerves.

This doctor feels that I have secondary fibromyalgia.  Which I am not going to dispute.

The Amitryptiline helped with sleep, which, in turn, helped me deal with my pain better.
Something I know about is chronic pain.  I've been schooled in it, for three weeks day in, day out.  I've also been living with it for 9 years, in various forms.

I know if I sleep better, I feel better.  That doesn't mean it IS fibro.  Doesn't mean that it isn't either.

Fact, if someone dealing with an illness that leaves then in chronic pain for an extended amount of time (no one really knows how long) and a resulting lack of sleep predisposes one to developing fibromyalgia.

Anywho. I was nearly fired from my psychiatrist because I let this doctor-in-training mess with meds that were not prescribed by her.  Firstly, I know better.  Secondly, she should have known better, she's the one who graduated from medical school.  Not me.

Well, my psychiatrist wanted me to have these heart flutters that I have had, since starting Amitryptiline, evaluated.  She firmly expressed that it has a laundry list of side effects and that she would never have put me on it. 

Today, I followed up with my GP's office.   CBC, TSH, etc were pulled.  An ECG was run, it is normal.  Auscultation was unremarkable.
I have a call in to both my rheumy and my psychiatrist regard stopping Amitryptiline.

So, word to the wise: If a doctor isn't willing to contact another of your doctors and work as a team.  They aren't worth keeping on your medical team.  Autoimmune cases often require multiple doctors to treat everything properly. Autoimmune patients need those doctors to, at the very least, communicate.

Tuesday, February 14, 2012

Shortage on Methotrexate Preservative Free Injectable Update

I heard back from my friend at Ben Venue Laboratories.  While she cannot comment directly, she did say that they are working on ensuring that those who need it, get it.  They are working closely with the FDA to get things back up and running.
Aside: From what I have read online, Ben Venue halted production when their internal quality control caught a discrepancy.  I, for one, am grateful that they were the ones that caught any issue (whatever it may be) before the medication was released.
That is VERY commendable!

Responder's Guilt

I have been pondering this post for several days . . . .

I feel like the methotrexate (aka MTX, Rheumatrex, etc) is starting to work.  My stiffness isn't as severe in the morning. Though, it still lasts as long.  I am able to move from bed a little sooner in the morning.  Stairs are still rough at that point.  I have more energy. My naps are shorter and I am able to make it on 8 hours of sleep or less (that was the real indicator, I haven't woken up exhausted).  I've been able to conquer stairs more often at school!

Then I began to worry about starting a thread about it in my online support group.  Feeling guilty, since so many people are having a rough time of it lately.  However, we also have a lot of scared new members, who are looking for the light at the end of that tunnel.

It was then that I realized what I was feeling was something akin to "Survivor's guilt".  I decided as I was falling asleep last night that I would write about this.  Share this good news.  Give someone else hope.  In deciding to do so, I started to recall the idea of medication helping a foreign thought.  I didn't really believe, though I desperately wanted it,that I could get better.

So, if you are reading this, grasping at straws and looking for some sense amongst the fatigue and the pain, DO NOT GIVE UP!  There is hope, you will find the right combination of medications and you will feel better!  I didn't believe it when others told me how much better I would feel once I did find that "magic" combination of drugs (for me it is 2 DMARDs, Sulfasalazine & Methotrexate; Mobic, Amitryptiline and Flexeril. With the occasional Percoset, tramadol or voltaren gel) . . . I didn't want to get my hopes up!
I am telling you, GET YOUR HOPES UP!

Friday, February 10, 2012

Know someone Battling with medical bills?

I am looking for a few organizations to support.  Organizations that help folks like me.

Right now, my insurance covers nearly everything necessary to cope with and treat my condition.  In July it will change.  We will have to pay for 20% of outpatient treatments, our office visit co-pays will go up, our non-formulary prescriptions will sky rocket.  However, what we will end up paying is still a fraction of what some pay out of pocket.  
Rheumatoid Arthritis Guy's facebook status this morning put it best, "You know you have rheumatoid arthritis when your monthly medical expenses are greater than your rent/mortgage payment!"

I am a full time student and hubby's meager income is barely cutting it right now.  He's only staying with his employer until I graduate and get a job, so we can continue medical insurance.  All three of us on the plan use it to its fullest extent.  
My MTX seems to be showing glimmerings of hope . . . I have a little more energy.  Monday through Thursday I am less stiff in the morning and I haven't needed breakthrough pain meds since 10 days ago.  Even then, it was for my intercostal neuralgia.  This weekend will be treatment four.  I am still on a daily dose of Sulfasalazine (2500 mg) as well.  Thursdays are crazy busy for me and I pay for it on Friday mornings until at least noon. Posted this this morning . . Raising Money for Medical Bills, Medication, Surgery, etc.  It is definitely a good place to start!
Please Leave comments about foundations and other non-profits that you are aware of!

Thursday, February 2, 2012


I followed up with the rheumy yesterday. The rib pain had returned with a vengeance.
She does not feel, at this point, that it is shingles.

However, she feels that the lining of the left side of my thoracic cavity (pleura) is inflamed.  A condition called pleurisy.  There is a slight chance that it could be related to a fibromyalgia flare, which could be magnifying the pain sensations.  Although, since I am otherwise feeling ok, the latter is probably not the case.

So, we can add yet another affected connective tissue to the list.

We are hopeful that by continuing the immunosuppressants, my symptoms will continue to improve.

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.