Don’t mess with mama bear

A friend posted recently about an email she received. Apparently the sender was questioning whether my friend’s child was truly sick, while at the same time offering advice on how to treat this “imagined” illness.

Charlotte’s can of whoop a** for for the day: 1) Do not email me a nasty email b/c you know many of my friends will set you straight if you say it on my post. 2) Do not accuse me of only posting things for sympathy and that if my kid was really sick, I would have rushed her to the ER. Some parents know that if you get dressed and prepare for the ER, you don’t have to go. If you wait and see, you leave in a rush and it’s insane. 3) Do not say that if I didn’t give my child Benadryl and other “toxic, inhumane chemicals” that she would be so much better. The toxic chemicals of vaccines probably made her body spin out of control. The toxic, inhumane chemical I inject in her arm every week has given her a much better quality of life. The toxic, inhuman chemical I gave her last night was to clear her nose and such so she could go to sleep. 4) Do not tell me that if my kid was really as sick as I claim, that I wouldn’t expose her to the germs at a public school. She deserves and needs a “normal life” and if that means public school, then so be it. 5) Do not tell me to get a job so I can afford private school or I should homeschool since I don’t seem to do anything anyways. Shall I go on? I will leave this up so you can read it, apologize to me, then I will delete you. Shame on you!!!!!

Now I know lots of moms who have kids with juvenile arthritis. By and large, we are all trying to give our kids as normal a life as possible. Part of that “normal” is letting our kids do what other kids do as much as physically possible. That doesn’t mean they do it the same way, or as well, or as often, but they do what they can, and we allow it so they can forget for a while that they are sick.

Sometimes we feel like we are beating our head against the wall, and with some people we may as well be. We never give up trying to educate those that will listen, and trying to ignore those that won’t. But we absolutely will not permit otherwise sensible and caring adults to judge how we treat our children’s illness, and dictate what those children can and cannot do.

OK, I’m finished being mama bear. I’ll pull my claws in now. 🙂

I’m not Wonder Woman after all

Last week was crazy busy. Seems like I had something on my calendar for about 12 days straight. Until yesterday.

I crashed yesterday. I didn’t sleep well and did actually have some stomach issues yesterday morning, so I contacted my boss and told him I hoped to be in after lunch. I never made it. By early afternoon I was feeling better, but spent most of the day in bed or watching TV.

This morning while trying to get myself to get up I finally pieced all of this together. I’ve known for a long time that I have to have time to myself and I have to have my rest. Not for physical reasons like so many people with inflammatory problems, but because of my chronic depression. It’s just as important as Marty getting his rest.

I’ve dealt with this monster in my head for long enough I know better than to get so overbooked. I just forget sometimes that if I don’t rest occasionally I crash. Like yesterday. Maybe I need to schedule a mental day once in a while just to avoid burn out.

Now I’m thinking these same words could be said about an autoimmune illness. Like so many spoonies* I too need to rest and recharge. Just not quite for the same reasons.

Remember not to burn tomorrow’s spoons for something trivial today.

*See The Spoon Theory by Christine Miserandino

My own private circus

I am in the middle of two very busy weeks. Both kids saw Dr F on Monday. Bella got her chicken pox vaccine and Marty had his sports physical for ::gulp:: high school baseball. Tuesday was Marty’s infusion, yesterday Bella had orientation for 8th grade, then volleyball practice. Today was Marty’s freshman orientation and a meeting with his asst. principal.

Tomorrow Bella, Irene and I go see about the guitar that Irene promised Bella for her birthday, then Bella has two volleyball games. Sunday my brother Wayne and his family are coming through town as their oldest son is moving to south Texas. Monday Bella goes to the dentist, Wednesday the kids go to a baseball game with their dad. Thursday is volleyball practice, Friday is a follow up with Dr F. Next Saturday are the last 2 volleyball games, then school starts that next Monday (the 27th). Then infusion the 28th. Oh and I’m hoping to get Bella’s MRI scheduled for before school starts.

Whew! Is it any wonder I’m tired and the house is a mess?

Wayne, Irene and I and several of our kids will have supper together Sunday. It should be fun, especially since the last time we were together was at dad’s funeral in June. The 3 of us did a lot of the leg work getting ready for the funeral, and I learned just how much there was to do. My brother Roy and sisters Marie and Faith had spent lots of time with dad before he passed. He was sick for 8-9 months and required lots of care, treatments, decisions and comfort. It’s no wonder everyone agreed that it was time to let him go the last time he got worse.

I have homework. I need to email all Marty’s teachers about his planned medical absences, and the baseball coach about him being in the wrong gym class. Marty has an infusion the second day of school, and the last thing I want is him getting behind the first week. We made a plan for him making up “seat time,” since it is almost certain he will fall below the 90% state minimum attendance line. The A P is going to check with the 504/special ed coordinator about his new diagnosis, and I’m guessing we’ll have a 504 meeting soon to make more accommodations for the processing and memory issues.

Who said life with kids was simple? Add the extra complication of a chronic illness, it’s just a barrel of monkeys. After all, my name is Anna Banana.

Who is the strong one now?

I am sitting in the infusion room while Marty sleeps. The Actemra is going in, so we are less than 1 1/2 hours from being finished. We have already been through the questions (lots more than 20), nurse has done her exam, IV is started, pre-meds were taken, and vitals are being taken every 15 minutes. Marty and I had some breakfast while the pharmacy was mixing the Actemra, and as soon as the Benadryl hit, he was out.

Watching him sleep, I am thinking about his strength and resolve. Ever since the Actemra started controlling his inflammation, he has made a conscious effort to get back in shape and eat more healthy. He has stopped drinking sodas (or cokes as we call them in Texas) and has cut way back on sweets. He avoids greasy and fried foods, and purposely chooses the lower fat and calorie options at restaurants. He is more active (partly because he can) and exercises at home several times a week.

Yesterday when we saw Dr F, our family doctor, we were discussing his stomach issues and how eating sometimes makes his stomach upset. I remembered he had blood allergy testing done, and asked Dr F to reprint the results for me. Marty reviewed them and I was reminded how many foods he tested as being allergic: wheat, corn, shellfish, soy, sesame, peanuts and walnuts. Those, plus a half dozen grasses and trees, and our dog and cat. None of these allergies are severe, and Bella commented how many of those foods he had eaten in the past few days.

Marty decided he wanted to cut those foods out of his diet and see if he feels better. We discussed what he could and couldn’t eat, and realized he would need to eat more rice and potatoes. He apparently wasn’t too keen on giving up all those foods at once, so we settled on one at a time. We are starting with wheat.

I have heard that wheat can cause inflammation, but the thought of cooking without it sounds like a royal pain. I know you can make bread from potatoes, and rice flour can be substituted for wheat in recipes, and apparently I will need to start looking for gluten free products.

I was feeling sorry for myself having to make these changes, when I looked at Marty and thought about the changes he has already made. Not only trying to be healthy, but the trials he has had the last few years. He has worked through pain, pushed himself through fatigue, ignored criticism and stares, and put on a happy face while getting injections, infusions and blood draws. I guess the least I can do is figure out how to eliminate wheat from his diet.

Kids with juvenile arthritis are some of the bravest and strongest people I know. They rarely complain, and give their best when others are just going through the motions. They want to be normal so much that they will endure pain and stiffness, knowing they will hurt more the next day. And here I sit thinking about getting my next chocolate cake fix. I’m such a wimp.

Selfish or just trying to be normal?

Marty told me today he no longer wants to be involved with arthritis advocacy. He said he wants to be able to forget about it. I guess he means besides the shots, pills, doctor appointments, infusions and blood draws. I mean, he can’t totally forget about it, but he wants to ignore it as much as possible.

I can’t say I blame him, being a teenage boy and doing well with his treatment and all. He is starting to try out his wings, and doesn’t like being weighed down with all this medical stuff that most kids don’t have to think about.

It ruffled my feathers a bit when he made a comment about people wasting their time looking for a cure. I tried not to show it, but I reminded him that the research being done to look for a cure is also what helps them develop new medicines that make him as healthy as he is. He clarified that he didn’t necessarily mean the scientists, he meant all the other things that go along with it, like fundraising, lobbying, awareness efforts, and patient programs.

He didn’t seem to be in the mood for discussion, and I didn’t feel like arguing, so I dropped it. Had I chosen to continue the conversation I would have reminded him you can’t fund research without all those other things. Without fundraising and lobbying, there is no money for research. Without awareness, you don’t open people’s eyes and hearts (and wallets) to donate. Without patient programs, people get tired of constantly feeding the effort without getting something out of it.

I know he doesn’t mean to be selfish about it, after so many people have helped our family, but I can’t blame him for not wanting to be involved. This illness stole over 3 years of our lives, and shattered hopes and dreams we all had four years ago. He is just now finally feeling normal again, but isn’t truly allowed to forget that deep down he is still different.

For now I’ll allow him the luxury of not thinking about it any more than necessary, and I’ll try not to mention it too much around him. Sometimes that’s hard to do, like today when I had to fill out the medical release for his baseball registration. The time will come that he will be forced to take control of his own health, but that time isn’t now. As he adjusts to high school I’ll let him be a little selfish. After what he’s been through since December 2008, I’ll give him that much.

Arthritis 101

I was reminded today that I am still unfamiliar with several of the 100+ types of illnesses under the arthritis umbrella.  This makes me think that I’m probably not the only one.

If you are new to the world of arthritis, I will attempt to pass on what I have learned.  Let’s start with the basics, the three major types of arthritis.

Osteoarthritis (OA)

This is the most common joint disorder, and is the type most people think of when they hear the word “arthritis.”  It is also called osteoarthroses or degenerative joint disease, and is the most common type of arthritis. OA is a chronic condition characterized by the breakdown of the joint’s cartilage. The breakdown of cartilage causes the bones to rub against each other, causing stiffness, pain and loss of movement in the joint. It is usually caused by aging and wear and tear on a joint, but can be the result of a traumatic injury. The most common symptoms are pain and stiffness in the joints. The pain is often worse after exercise and when you put weight or pressure on the joint.

Rheumatoid Arthritis (RA)

RA is a chronic disease, mainly characterized by inflammation of the lining, or synovium, of the joints. It can also affect organs. The cause of RA is unknown. It is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. Infection, genes, and hormone changes may also be linked to the disease. RA can occur at any age, but is more common in middle age. Patients diagnosed under the age of 18 are considered to have Juvenile Arthritis (see below). Women get RA more often than men. It can lead to long-term joint damage, resulting in chronic pain, loss of function and disability. 

Joint symptoms may include morning stiffness and joint pain. Over time, joints may lose their range of motion and may become deformed. Other symptoms include chest pain when taking a breath (pleurisy); dry eyes and mouth (Sjogren syndrome); eye burning, itching or discharge; nodules under the skin; numbness, tingling, or burning in the hands and feet; and sleep difficulties.

Juvenile Arthritis (JA)

This is any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Almost 300,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions in the United States alone. Like RA, it is a malfunction of the immune system. Symptoms of JA may begin with a swollen joint, limping, a spiking fever, or a new rash. It is particularly difficult to diagnose in young children because of their verbal limitations and possibly inexperience of the parents. JA can also cause eye problems called uveitis, iridocyclitis, or iritis. Damage to the vision can occur before or after symptoms are present.

sources: Arthritis Foundation, National Institutes of Health

Is your life going according to plan?

Four years ago, I would have never expected to be where I am today.  I had a son who played three sports, all well, and a daughter who was a dancer and cheerleader.  Marty was instantly successful at any sport he tried, and Bella was active in several school activities.  Both had easily made friends in the first year at their new school. It was one of the best times of our lives.  I was blissfully unaware of what was to come, and took my healthy kids for granted. I had no idea it would be the only year that Bella cheered for Marty’s football team, or that he would never again compete in athletics without pain.

Then our world came crashing down around us.

We all got sick, and Bella and I got better.  Not Marty.  His fever lasted two weeks.  He spent Christmas in the hospital, and the doctor actually told me they were fishing for the cause of the fever, rash, and migrating joint pain.  By New Years, they told me it was either a nasty virus or arthritis.

Juvenile arthritis.  It didn’t even register what I was hearing.

Finally in February, we got the diagnosis.  He definitely had juvenile arthritis, but they couldn’t yet tell us what kind.  They said he was an apple but couldn’t tell us if he was delicious, granny smith, or gala. I still didn’t get it.

Fast forward 40 months. Forty months filled with pain, stiffness, inflammation, pills, injections, infusions, lab draws, doctor appointments, hospitalizations, MRIs, x-rays, echo-cardiograms, wheelchairs, ER visits, and infections. Our family has had to learn to plan around Marty’s medical care. We have had to become aware of germs, viruses, bacteria and other threats to Marty’s immune system.  We have dealt with a pericardial and pleural effusion, an ICU admission, and homebound schooling. Our money has gone to doctors and pharmacies instead of family outings. Besides the usual family doctor and dentist, and a half dozen rheumatologists, our list of medical professionals includes an endocrinologist, a cardiologist, an ophthalmologist, a neurologist, a surgeon, a psychologist, a podiatrist, a physical therapist, and some wonderful infusion nurses.

The kids and I have lobbied congress, spoken at fundraisers, attended conferences, and connected with people from around the world. I have cried, laughed, prayed, waited, and grieved. I have both asked for and given advice.

But it hasn’t been all bad.  We have taken trips and had experiences we never would have otherwise. We have grown as individuals and as a family.  We are stronger, closer, and better equipped to deal with adversity.  I appreciate the health that my kids do have. I have made friends that understand both our loss and our new life. We have adjusted our priorities, and are able to let go of the small things.

Now I get it. I understand that juvenile arthritis can be life threatening. It can disable, disfigure, and discourage. But it opens up a new world, full of wonderful people that give you a new perspective on life. It changes the entire course of your life. You will end up in a completely different place than you planned or ever expected. But that’s OK, because you will be better for it.

He forgot his meds…

Marty forgot his meds this morning and didn’t realize it until it was time to take his evening pills.  He was thrilled that he didn’t even miss them.

This is HUGE!

Personally, I wanted to get on the phone and call everyone I know, but most people wouldn’t understand what a big deal this is. They don’t realize the loss and grief we have endured, the thousands of pills Marty has swallowed, the hundreds of needle sticks he has faced, the dozens of doctor appointments he has had, the sleepless nights, the pharmacy trips, the ER visits, the painful morning stiffness…I could go on, but you either know what I’m talking about or you don’t.

I know it’s too soon to think that he’s anywhere close to remission, even medicated. But even one day without pain and without medicine is a major milestone. I couldn’t be more thrilled.

I’m going to go have some celebratory ice cream. With chocolate sauce for good measure.  Care to join me?

No, I’m not a doctor…

I am surprised at the amount of medical knowledge I have gained in the last 3 years. Besides knowing how to give injections, being familiar with needle guages, being able to explain the difference between autoimmune arthritis and osteoarthritis, having thousands of dollars of biologic medicines in my refrigerator, and passing through airports with prefilled syringes, I have learned many, many things about autoimmune illnesses.

I have learned words like tenosynovitis, pericardial effusion, macrophage activation, and gastroparesis. I know the difference between non-steroidal anti-inflammatory drugs, disease-modifying anti-rheumatic drugs, and bioligic medications. I have listened to symptoms and speculated (sometimes correctly) about whether it was an autoimmune illness. I have urged friends to seek a second medical opinion or to be more persistent with their doctors. I have a wheelchair and two sizes of crutches in my garage, and a 4-foot tall bookshelf literally full of medical supplies.

I can name at least 15 symptoms of 15 different autoimmune illnesses and 15 different medicines to treat them off the top of my head, probably more if I tried. I can tell you the difference between uveitis and iritis, oglioarticular and polyarticular juvenile arthritis, and psoriatic arthritis and still’s disease.

I have 3 pharmacies and 2 doctors on my phone favorites list, and probably a dozen more in my contact list. Half my friends on my regular facebook page are involved in the RA/JA community in some way. A dozen medical professionals recognize me and/or know me by name and remember most of Marty’s history without looking it up. I know the ins and outs of 3 different hospitals, and know the closest children’s ER almost as well as my own home. Marty and I know the cafeteria menu pattern at MasonicDocsRUs and can guide newcomers just about anywhere they need to go.

No, I’m not a medical student, but do I sound like a regular parent?

All in the Family

You may have heard that autoimmune arthritis (as opposed to osteoarthritis) has a genetic component.  In Marty’s case, his dad and I both had parents with rheumatoid arthritis (RA), so we both could be carriers. As I meet more and more people with autoimmune (AI) illnesses, I see more and more family members affected: parent/child combinations with Lupus/juvenile arthritis, RA/uveitis, or psoriatic arthritis/Anklosing Spondylitis. I know one family that has three generations affected with AI illnesses, and a mom and daughter both on the same biologic medication. This can be a blessing in disguise.

One benefit is that parents are more aware of their kids’ aches and pains, and more likely to know whether they are caused by an injury or by arthritis.  If Marty’s first symptoms had been swelling, rather than unrelenting fever, he might have become seriously ill before we got a diagnosis.  We might have not sought medical treatment for his chest pain until the pericardial effusion reached a critical stage. If he had been one instead of eleven, he wouldn’t have been able to tell me how bad he felt, or that he had migrating joint pain in the emergency room on Christmas Eve.  In that sense, I was saved from my ignorance by the simple fact that his illness presented differently than most kids.  Also, had I been familiar with AI illnesses, I might have been more quick to believe Marty when he told me he was hurting 30 minutes after he played with the dog.  Now I know better.

There are plenty of drawbacks, however.  First is the greater cost of having two or more people in the house with a chronic illness.  One is tough enough on a budget, I can’t imagine two. Also in our family when Marty is hurting, Bella and I pick up the slack.  In return, he helps out more when he is better.  That’s not something you can do if there are two family members down at the same time.  In addition, any time Bella has a symptom that remotely resembles one of Marty’s, my mind jumps to arthritis.

Does your family have two or members affected?  Has it been good or bad, or a mixed bag?