at the library

Just got back from the library and we had to laugh at what we checked out.

We went tonight to return some checked out items at the Highlands Ranch Library and to get Conor’s free book, “Grumpy Bird”, from OneBook4Colorado. OB4C is a non-profit organization that is giving out 75,000 copies of “Grumpy Bird” to 4-year olds across Colorado! Click here.

Mo & I were talking about side effects of Acthar and mood swings are very probable – maybe “Grumpy Bird” will be a perfect “teachable moment”. Hahaha.

image

While we were in the children’s section of the library Mo saw “Diseases Vol. 7 Polymyositis – Spasms” on an end display. What a coincidence! Here’s the page talking about PM:

imageLastly “The Big C: Hereafter” is the final season of one of my favorite shows. Since we cut premium cable (it was on Showtime) before I could watch the last episodes I’m SUPER excited!!! I know Cathy dies in the finale, stupid podcast ruined that for me, but I’m looking forward to some “embrace life for what it is” messages.

All in all a VERY successful trip to the library!!!

Acthar treatment: week 1

As you know, last week was my first full week on Acthar.

There is a lot of good information on the official drug site, click here, on how to administer Acthar Gel. I must say they did a really good job on being thorough on the step by step instructions and videos.

Image

When I administer my shot I find it a lot easier to lay out everything ahead of time as pictured above:

  • Acthar vial warmed up to room temperature. Acthar must be stored refrigerated.
  • Alcohol swabs to disinfect the rubber top on the Acthar bottle and the injection site.
  • 1ml syringe (which is my dosage)
  • 20 gauge needle to extract the Acthar. It is a bit syrupy.
  • 25 gauge needle to inject myself. The kit came with a 23 gauge needle which I discarded for the smaller and less painful needle.
  • Cotton balls to break up the medicine once injected under the skin.
  • Gauze pads and Band-Aid in case I draw blood. In this case I would use a different injection site.
  • Needle disposal kit. Some of these don’t come with the kit and I purchase myself from Walgreens.
  • Don’t forget if you have a Flexible Spending Account, most of these items are eligible.

I inject myself subcutaneously (beneath the skin) into my abdomen. My rheumatologist thinks this is a very effective way of delivering the drug. Other options are subcutaneous injections into the upper arm or leg and intramuscular (into the muscle) of the bicep or quadricep . If you are unable to give the shot to yourself you can have someone else do it for you. In addition the Acthar Support and Access Program (A.S.A.P) does provide, at no cost, a skilled practitioner to show you how to do the injection.

The injections are getting a lot easier with practice. I still have a bruise from the 1st injection, but none since. Also the injection site might be a bit tender for a couple of days. I inject twice weekly, on Thursday and Sunday afternoons. I usually do it sitting on the side of the bed so I am not slouched.

As to how effective the drug is, it is too early to say.

Certainly I am getting less muscle aches in my arms. My legs are still getting weaker. Walking upstairs is getting more difficult. I usually feel pretty good in the morning, and even better the day after my injections. By evening time I feel myself fading and my walking more deliberate. Also by evening I feel the need to keep my arms extended as much as possible. I am not feeling any side-effects to the drug this far.

serious as a heart attack

When I tell people that Mo is taking short-term disability they ask me if he’s sick like before. I don’t know how to answer that, because he’s been sick the whole time since before. It’s what people forget about autoimmune diseases, they don’t go away. Unless they come up with a cure for myositis, Mo will technically be sick for the rest of his life.

“Remission” – Our doctor told us he doesn’t like to use this word because it is misunderstood. We’ve used the word out of convenience, but it has confused people. What we should say is that Mo has been “flare free” for the last seven years. When you think about cancer going into remission, you visualize the tumor dying or being removed from the body, and that no cancer cells are regrowing or spreading into other organs or tissue. In the case of myositis, your immune system more accurately goes into “suppression” because your immune system can’t go anywhere. It’s part of you. You suppress the immune system, you don’t get rid of it.

“Flare” – A flare is a severe or sudden onset of symptoms of your autoimmune disease. Flares can be caused by stress, environmental factors, or changes in body chemistry (think big body swings like pregnancy, stroke, etc). Your immune response to those changes spikes, and like Nigel’s amp in Spinal Tap your flare goes “all the way to 11″.

 

Mo takes drugs every day. Every single day.

When I tell people about the drugs that Mo has taken ever since he was first diagnosed, they don’t quite get how the drugs and disease affect each other. So let me try to explain:

When he was sick in 2007 he went through different drugs to find the chemical balance in his immune system to suppress it’s reaction to the disease. Those included, Prednisone, Imuran, and eventually Rituxan. The trick was finding the right balance of the drugs to kick his immune systems into “suppression”. He was on high doses of Prednisone in the beginning, then tapered that down as he added Imuran. Then he got big blasts of Rituxan (by infusion) when the mix of the other two drugs wasn’t controlling his symptoms. Once his immune system was back in check, he was able to eliminate Prednisone and Rituxan from his treatment and control his disease with a fairly low dose of Imuran.

Now that Mo is in flare we are going back to the big guns. Previously Rituxan, but this time the drug is Acthar.

When I explain to our friends what that’s like, I use the analogy of a heart attack. Here’s how it goes – When you have a heart condition:myositis, you might take a baby aspirin:Prednisone/Imuran every day to help prevent a heart attack:flare. But when you are having a heart attack:flare, you need to use nitro glycerin:Rituxan/Achtar to handle the reaction. Hopefully the nitro glycerin:Rituxan/Achtar is enough to shock your heart:immune system out of the heart attack:flare and you’ll be able to go back to your daily maintenance routine of the baby aspirin:Imuran.

It’s not a perfect analogy, but it gets the point across. And I like it because Mo’s autoimmune disease is as serious as a heart attack to me.

 

 

 

 

 

call their bluff

When Mo was sick in 2007 we were friends with a lot less people in Highlands Ranch. We only knew coworkers and a few neighbors, and most of our friends lived in Denver so we didn’t see those folks that much. Back then we didn’t ask for much help, I worked from home when I could and tried to do everything else on my own. I was wrecked. And that was before my car accident/foot problems and us having our son Conor!

Now that Mo is sick again, our support group is much larger (friends we’ve made from the neighborhood, Conor’s school, and our KIT Group!) and this time we are going to ask for help early!

Little things that neighbors can help us with – mowing our small front yard, shoveling after a spring snowstorm, watching Conor for an hour or two to give us a break. If they offer we will take them up on it! We are not proud.

When you need help, you need to ask for it. If folks ask what they can do to help you, tell them! It reminds me of George Carlin’s “It’s Bad for Ya” special – call their bluff.

 

 

April showers bring May money

Don’t forget to bring your spare change to our May meeting so our “Rainy Day Fund” jar can grow!

Remember, our Colorado group is having a coin fundraiser this year to help us afford more guest speakers, plan social and myositis awareness events, or possibly provide scholarships for members to attend future TMA conferences. What we’ll be able to achieve with the money raised will all depend on how much money we are able to raise. Pretty smart economic strategy, right?

We’ve saved $22 since our February meeting. Every penny counts and those loose coins add up quick!!!

Help us get to our group fundraising goal of $200 (matching our annual group allowance provided by TMA) so that we can double our resources! Click here for previous post about our coin fundraiser.

image

If you won’t be attending our May meeting but would like to contribute to our fundraiser (100% tax deductible) send a check payable to “Myositis Colorado” to:

Myositis Colorado

c/o Nicole Bolger

10219 Aldenbridge Ct.

Highlands Ranch, CO 80126

BONUS: For every $5 donated to our group (through August 2nd)

Receive ONE entry into our September 21st Picnic in the Park Raffle!!!

protecting your j-o-b

Understanding disability is hard. We went through the process in 2007, but I still had things mixed up.

One thing I thought was that going on STD would help protect Mo from losing his job. Um, yeah, that’s not true.

Reading through all the different kinds of leave I see now that I confused some of the advantages of Short Term Disability (STD) with aspects of job protection provided through the Americans with Disabilities Act (ADA). I forgot all about the Family Medical Leave Act (FMLA).

So let’s try to figure this out together… is Mo’s job protected during disability?

The laws covering whether you can be fired while you’re off work recovering from a physical or mental illness or injury are complicated.  First, it depends whether you are taking leave under the FMLA or similar state leave law, taking other unpaid leave, or collecting workers’ compensation temporary disability benefits. Whether or not you are collecting short-term or long-term disability (LTD) insurance benefits doesn’t matter – LTD policies offer no protection for your job.

Second, you can always be laid off due to business necessity or fired for performance issues that don’t have to do with your disability.

Third, there are some situations in which you can legally be fired even though you’re on disability leave, as long as your employer follows the rules under the Americans with Disabilities Act (ADA).

Job Protection Under the Family and Medical Leave Act (FMLA)

If you are covered by the Family and Medical Leave Act (FMLA), you can take up to 12 weeks of unpaid leave to deal with a physical or mental medical problem (or to take care of a family member’s medical issues). Unfortunately, the FMLA does not apply to most employees who work for small businesses – it applies only to employees who work at companies with at least 50 workers (who must work within 75 miles of each other). Also, employees can take FMLA leave only if they worked at least a year for an employer and worked at least 1,250 hours for that employer last year.

Assuming you are eligible for FMLA leave and you correctly requested it, you cannot be fired while on FMLA leave. And when you return from FMLA leave, your employer must give you back your position, or one that is nearly the same – assuming you can still do the job.

Job Protection Under State Leave Laws

Most states have their own laws regarding unpaid leave for medical reasons, and most of these laws provide similar protections as the FMLA. Some state leave laws, however, are more generous than the FMLA. For instance, the California Family Rights Act requires your employer to continue all group benefits while you are out on leave. Check with your state’s Department of Labor or an employment law attorney for information on your state’s leave policies, especially if you aren’t covered by the FMLA.

Job Protection under the Americans with Disabilities Act (ADA)

Even after you have exhausted your 12 weeks of FMLA leave per year, the Americans with Disabilities Act (ADA) can make it difficult for your employer to fire you when you are out on disability leave. Fortunately, the ADA covers more small businesses than the FMLA – those with just 15 or more workers.

Before firing you while you’re on disability leave — or not reinstating you to your position after your disability leave ends — your employer has to try to “accommodate” you; that is, make the job suitable for you, given your impairments. Examples of ways an employer could accommodate your disability include granting you more unpaid leave after you’ve exhausted your FMLA leave, allowing you to work a flexible schedule, or making your workspace more ergonomic.

Your employer must work interactively with you to try to come up with accommodations that would allow you to do your job. (To protect yourself, it’s best to request accomodations from your employer in writing.) During discussions with your employer, you may need to compromise on the accommodations you asked for, however, since your employer only has to make accommodations that are reasonable and that won’t cause the company “undue hardship.” What constitutes undue hardship is based on the cost of the accommodations to your employer and the size of the company.

If you and your employer can’t figure out any accommodations that are reasonable and that allow you to do the “essential functions” of your job, your employer can fire you. In other words, despite the best efforts of your employer to accommodate you, if you still can’t do the job, you can be fired. (Or if your employer has set up accommodations that allow you to return to work, but you don’t return, you can be fired.)

About requesting unpaid leave as an accommodation, keep in mind that it has to be reasonable and not cause undue hardship. Generally, your employer has to allow you to take leave if you are expected to return in a reasonable amount of time and to be able to do the job when you return (with further accommodations, if necessary). For instance, if you are a key employee whose absence can’t be covered temporarily by existing or new employees without great cost, or if you ask for a lengthy leave without a definite return date, your employer may be able to claim undue hardship. Here’s a good rule of thumb: If the cost or other consequences of allowing you to take additional leave (while saving your position for you) threatens the company’s financial stability, your employer will probably be allowed to fire you. For further discussion on this, see Nolo’s article on when an accommodation recreates undue hardship.

If You Are Fired

If you were let go while on disability leave – FMLA or not – speak to a disability or employment lawyer. You may have a claim for wrongful termination under the FMLA or ADA, but before you sue your employer, you need to file a complaint with the Equal Employment Opportunity Commission (EEOC). Article taken from DisabilitySecrets.com, click here.

 

So yes, Mo’s job is protected… and no, it’s not really. See – I said understanding disability is hard! In any case I’m glad that Mo will be taking time off to get better. If his boss needs a “Sick Note” we’ll send along this video – another Lego treasure!

 

the long and short of it

As you know, Mo is in flare and starting his Acthar treatment this week. This is also the week he starts Short Term Disability.

What is Short Term Disability?

Short term disability is a type of insurance that pays a percentage of an employee’s salary for a specified amount of time, if they are ill or injured, and cannot perform the duties of their job. Coverage usually starts anywhere from one to 14 days after your employee suffers a condition that leaves them unable to work. Many times, employees are required to use sick days before short term disability kicks in, if it’s an illness that keeps them out of work for an extended period of time. This is why there is usually a different policy for short term disability for sickness versus an injury.

Who Pays for Short Term Disability Coverage?

A short term disability policy can be an employer or employee paid benefit. Generally, though, short term disability coverage is employer-paid. Companies do have a choice of having employees pay for coverage, with certain tax implications.

Group coverage for short term disability can be attained in the following ways:

  • Contract agreement through an insurer that covers disability.
  • Through a self-funded plan set aside by the employer directly.

Coverage Terms

As an employer, you can create a policy dictating that employees use sick days before going on short term disability for an extended illness. You can also require documentation from a doctor to prove an illness or injury.

Different short term disability plans dictate different terms for qualifications. The main terms are listed below:

  • Employees need to work for the employer for a certain amount of time before coverage kicks in.
  • Employees need to work full-time, usually 30 hours or more a week.

The following are part of what a short term disability plan benefits package may include:

  • Percentage of weekly salary paid out (typically between 50% – 70% of weekly salary).
  • Duration of short term disability benefits (typically between 10 to 26 weeks).
  • Maximum amount of time covered under this disability program.

It’s also important to know the rules of the states where you have employees. While short term disability is not a requirement in most places, some states such as Hawaii, New Jersey, New York and Rhode Island mandate that short term disability benefits are provided for up to 26 weeks. You may also want a long term disability program in place once an employee’s short term disability ends. If an employee is still out of work due to illness or injury, a long term disability can help even further.

In Mo’s case, his employer requires him to use one week paid vacation before STD (an unfortunate acronym, we know) kicks in. Then his policy states that he’ll continue to receive full wages during weeks 2 – 9 of STD, thereafter receiving 66% of his salary for up the rest of his STD (up to 180 days, or 26 weeks). If Mo’s condition worsens after 6 months, he would then need to apply for Long Term Disability.

What is Long Term Disability?

Disability insurance is a benefit that is generally one of the most important parts of a benefits package. While some companies opt to fund a short term disability or don’t even offer one at all, many more employers do offer a long term disability program funded through a third party administrator such as a disability insurer.

According to Unum, a major provider of disability insurance, 3 out of every 10 workers between the ages of 25 and 65 will experience an accident or illness that keeps them out of work for 3 months or longer, with nearly 60% of these injuries occurring off the job. If an employee is hurt off the job, worker’s compensation will not cover them. When an employee cannot work for an extended period of time, a long term disability plan can help cover a portion of the employee’s salary. Long term disability usually kicks in after a short term disability policy has run out.

Who Pays for Long Term Disability Coverage?

There are a few choices on who can pay for a long term disability plan. Years ago, many companies paid the full amount for long term disability. Now the trend has costs shifting away from this method. Depending on which option is chosen, there may be different costs and tax implications:

  • Employer fully paid plan
  • Employee fully paid plan
  • Shared cost plan

Coverage Terms

Employers can choose how much coverage to elect for their employees. Most plans cover 50-70% of monthly salary. The duration of plan benefits can also extend for awhile. Some plans only pay out 5-10 years worth of disability to anyone qualified, while others will pay out till age 65, based on a rate schedule.

Under plan rules, employees filing for disability can only qualify for coverage under certain terms. The main terms are listed below:

  • Employees need to work for the employer for a certain amount of time before coverage kicks in.
  • Employees need to work full-time, usually 30 hours or more a week.

The following are part of what a long term disability plan benefits package may include:

  • Percentage of monthly salary paid out up to a pre-determined monthly amount (typically between 50% – 70% of monthly salary).
  • starts (typically between 90 and 180 days).

Depending on plan terms, a person on disability may be limited to how much coverage they receive, and will have to choose another career for which they are suited, in education or training. Another option, usually reserved for highly skilled workers or upper management, is a long term disability contract that allows a person with disability to receive benefits for the lifetime of the coverage, without switching professions.

In Mo’s case, there are a TON of prerequisites to fulfill before Long Term Disability starts – like proof of disability, application for Social Security disability benefits along with an SSA signed release authorizing information sharing, a reimbursement agreement for overpayments, evidence of continuing disability, and proof he’d be under appropriate care and treatment of a doctor throughout his disability.

LTD benefits begin after 180 consecutive calendar days (this is known as the “elimination period”). If he’d return to work for 30 days or less during his elimination period, he would not need to complete a new elimination period (aka start the whole damn process over again).

Another complication to figuring out LTD is his employer offers two different LTD plans – one that is a taxable benefit, and one that is a non-taxable benefit (that part is a math equation that makes my head hurt a little too much to explain here.)

All in all we are VERY lucky that Mo’s job provides both STD and LTD!!! To have Mo’s disability income while he is being treated is the only way our family can survive financially.

If you are still working while sick we encourage you to research your company’s STD/LTD options – there may come a day you’ll need to know how this whole “disability thing” works.

Lego my Acthar

Our son, Conor, is four years old. Here’s how I’ve talked to him about Mo’s disability and disease:

Me: Conor, I need to talk to you about Daddy. Did you know that Daddy’s sick?

Conor: Daddy doesn’t look sick.

Me: Well, that’s true. But Daddy has a disease that you don’t see. It makes his muscles really tired and achy. Y’know how your body hurts when you get sick? Your muscles get all sore and you need lots of naps… well that’s how Daddy feels, and it’s important for him to get a lot of rest.

(Conor’s listening really closely so it’s going well)

Me: Daddy’s going to be at home a lot more soon, and it’s up to us to take care of things while he gets better. Even though Daddy’s going to be around it doesn’t mean that he’s going to be able to play with you all the time. He can’t be going up and down the stairs all the time – he’ll still be able to play Legos with you (our basement is Lego Central for the guys) but just not as much.

Conor: Well, he can sit down on the chair and do Legos.

Me: Yep. He can. But if he needs to sleep you need to let him, and we’ll be really quiet, right?

Conor: Right.

Me: And Daddy’s going to be using a new kind of medicine. The medicine will help him get better really fast, well, we hope it will. But Daddy has to give himself a shot for the medicine.

Conor: Ooooh! Shots hurt! Remember when I got those three shots? (he got those last August at his pediatrician appointment) Those hurt a lot – ouch, ouch, ouch!!!

Me: I know – shots hurt. But shots are important – they help keep you from getting sick. And when you get older you don’t mind getting shots as much because you know they will make you healthy. They still hurt, but it’s okay. It’s worth it.

(At this point I think I should explain how the immune system works so Conor gets the big picture)

Me: Remember when you learned about germs in preschool? Germs make you sick. But we all have an immune system that fights germs and keeps us healthy. Germs are like the bad guys, and your immune system makes white blood cells that are like the good guys. When you are little, like you, your immune system is new and your good guy cells don’t know what the bad guy cells look like. So you get shots that have little bad guy germs in them. When your good guy cells fight those germs they get really big and strong. And you need really big and strong good guy cells to fight big and strong bad guy germs that you might catch somewhere. If you didn’t get shots for your immune system to get bigger and stronger, you could get really really sick.

(Conor’s understanding the “good guy/bad guy” idea so I switch it over to myositis)

Me: Okay – so Daddy’s disease makes his immune system work differently from you and me. His good guy cells get really confused. His immune system thinks healthy parts of his body are bad guy germs. His good guys fight his healthy muscles. They don’t know that they are hurting Daddy – they think they are doing a really good job. So Daddy’s shots will help his good guy cells learn what is a good cell and what is a germ again. So that’s why he needs the shots, got it?

Conor: Got it. And maybe when the good guys know there’s no bad guys, Daddy will feel better!

And with that, Conor now understands why his Dad needs to take it easy at home (yep, we’ve got a smart boy).

I’m sure we’ll have to reinforce this lesson, and that sometimes Conor will want Mo to do more than he can, but at least we have a starting point for future conversations.

And since Conor loves All Things Lego – checkout the scene Mo created for him this morning… delivery of his first doses of Acthar! It cracks me up that there’s both Storm Troopers and the Rebel Alliance (BTW, the Lego Minifigure-sized vial of Acthar contains 5 doses of the drug)

image